Tag Archives: melt downs

Family Reunion – It Felt Good To Feel Accepted

This past Saturday was my big family reunion from my dad’s side. It has been over 10 years since we have had one and it has been that long since I have seen many of them. It is a little different for me because I had not lived here for so long; I missed many family gatherings and events that my sisters and other family members had attended. It fed into my feelings of not belonging, and isolation from people I was supposed to have some sort of connection with because of that. It escalated my social confusion and anxieties with them. However, when I would see them again I would feel an instant acceptance with many of them, not all. I feel more uneasy with certain family members that I have had more social contact with then, the family that I am referring to at the moment.

I was excited and nervous about the family reunion.

I was concerned about Daniel, I knew that he would enjoy himself, but would it be too overwhelming? Would I have to run out of there feeling judgmental eyes? Would people treat him like he was odd or admonish me for my parenting style? Would I have everything I needed to feed him? Would I have everything needed so he could have fun and not feel the sting of anxiety? So many questions! And they didn’t stop. I had plenty more for him, and then I had more for Ariel, Joshua and ME! I scripted, I planned, I prepared, I did all that I could think of to make this the best day possible. The good news is that I did not do that for months or weeks, I did start the week of because my own anxiety started to set in.

My anxiety had more to do with seeing my youngest sister because I have not talked to her or seen her in a couple of years.

From all that I have pieced together she either hates me or doesn’t care one iota about me and my kids. Either way, it stirs anxiety because of the uncertainty of the relationship. If you hate me, fine just tell me. If you don’t care if I exist at all, fine just tell me! I am ok with that – I am not ok with the not knowing. It caused me to be in almost hysteric panic state before leaving, but I believe that was just a trigger. I think with all of the schedule changes, school starting, mom coming in town, David being gone, my leg being hurt causing me not to be able to be as mobile as I normally am and the lingering “Oh, my goodness I am going be around people for hours!” the relationship confusion and uncertainty was what my mind focused on as a negative way of stimming.

So I got passed all of that and it turned out she did not come anyway.

I had had several interactions with family members that I do not talk to much on facebook too where I explained myself clearly and was open about being confused by their comment. I told one that I was Aspergers and another one about my social confusion. I had a moment of panic … for a few hours, but then something wonderful happened, they accepted me. They did not come after me with any sort of rude or dismissing comments they either “liked” what I had to say or explained themselves. I have found myself telling people more and more what is actually going on in my mind and explaining what I mean. I have become more open about Aspergers, my anxiety, depression, triggers, and how I process things too.

It has made such a difference to use my voice (in writing mostly).

I know that this blog has been the springboard for my new ability to do this with people in my physical life. (It has taken several years!) My family here, my dad, and step mom who live about three and half hours away have all been trying to be understanding and accepting. I have noticed major changes in how they speak to me and interact with both Daniel and me. I feel that with me being more open and able to explain my feelings/thoughts that it has contributed to our relationships moving in positive directions. It has taken me time to adjust and accept these changes – it is hard for me to trust after so many challenging relationships, but I am working at it. Ok, let me venture back into the great acceptance that we received as a family at the reunion.

Keep in mind; I am not sure we would have been able to go to a family event like this last year.

This summer has been filled with many unexpected “firsts,” for the kids and me. I am not sure that I would have been able to handle going to the family reunion on my own last year; I know that two years ago I would have most likely opted out. The kids did great, none of them were anxious with the fear-type anxiety they were excited/happy anxious. I was too after; I worked through my other anxious feelings. I felt at ease, I did not even think about what others might think or do by the time I got there. The kids and I were all smiles and ready to see people. I had already prepared myself for all the hugging, they are all very huggy and there are actually times when I do not mind hugs when I feel safe and I have prepared for them.

No one forced the kids to hug them and they just let them run around and be kids.

Daniel had to wear his sound reducers the whole time. We had to take several breaks outside so he could have some quiet, but it was good for me too – we gathered ourselves and had the ability to go back in. He was non-verbal the whole day, it was too overwhelming, but he did communicate to me through sounds, gestures, and taking me places to let me know what he needed/wanted. He was incredibly happy. He smiled all day long, went up to people looked at them and studied their eyes. No one got upset or agitated. He walked around to all of the tables sitting down in a chair listening, looking, smiling, or he wandered around the table looking in close at people and smiling at them.

Everyone was very kind.

They did not give him strange looks when he was hand flapping or while he was walking the perimeter of the building inside – we did need to walk outside too. He went to my aunt a couple times when he was getting overwhelmed and wanted her to hold him on her back while walking around or rocking. I normally do that at home or when we are out, it is rather amusing to see. He is almost as tall as me and over 60 pounds; when people say anything I say, “This is why I do boot camp so I can carry him.” Obviously, that is not the only reason – people have strange reactions when they see it so I use that as a way to ease the situation.

Ariel and Joshua had so much fun too.

They ate treats, played with water balloons, ran all around outside, and played with other kids. My aunt came up with a game for the kids to go around to people that they did not, write down their name, and one fact about them. Ariel went off all on her own and I went around with Joshua to help him write the things down. We went to one table and they had mentioned something about Daniel’s sound reducers. They thought they were head phones, I told them what they were and also shared the he was Autistic. My cousin looked at me and said, “Really? They think (insert name)’s oldest boy is Aspergers.” I said, “Well I am diagnosed Aspergers and this little guy is Aspergers too, so it does run in the family.” I smiled at him and noticed that his face lit up.

We were able to speak for a little bit, but not much – I believe that it may have given a little hope or at least peace when I said it.

I am not too sure; I do know that it was a positive experience. When I was saying my good-bye’s he hugged me and said, “I love you.” It was a moving moment for me because even though we had not had many interactions and had not seen each other in a very long time, I knew that he meant it. I actually, felt a lot of love on Saturday in a way that I have not been able to before with my family. I know the kids felt it too and Daniel especially, knew that people there cared about him, accepted him, and loved him. He knows immediately when people are not “feeling the love” so to speak and he wants no part of them or the environment. We had been there for over five hours; though Daniel did not want to leave it was time.

I was still not sure how the rest of the day would go.

After such an event we all need to decompress and sometimes Daniel’s only release is to meltdown. I wasn’t sure if our night, or the next few days were going to be filled with decompressing. I was feeling that and the need to get home quickly, I had to have several people help me out with all of our toys, bags, cups, etc … And all looked grand on the horizon then, by accident and fluke a water balloon hurled across the parking lot and landed right into Daniel’s bin of prized possessions – either electronic or solar-powered, fragile delicate solar-powered flowers and critters. There was a moment of shock and then, I uncontrollably lost it with “Oh, no! Oh, no! Please, God no!”

I grabbed a towel to try to dry off everything.

I was a frantic mess. All that was running through my head was If any of these are broken this day is ruined. All the happiness is gone! I will not be able to calm Daniel down. My night and the next few days flashed before my eyes and it was not pretty. His toys are not easy to get I have to order them online which means that it would take a couple of days to get here. I just wanted him to have a great day; I wanted all of us to have a great day. I wanted a positive memory so we could do it again. I wanted him to keep all the joy that he had. I knew that I had to gather myself, I walked away trying to get his solar-powered flower to work and I couldn’t – I was almost in tears. Then, the next thing I knew Daniel was standing close to my side, he was quiet, and calm.

He reached under his flower and clicked something, it was working.

He looked at me with his sweet face as if to say “It’s ok mom.” We walked back and my uncle brought a soothing calm presence too telling me, “Daniel is calm, you are calm. Everything is ok.” He was right, I apologized to Daniel letting him know that I panicked because I thought it was broken and later at home I explained to him how I was overwhelmed too. The kids and I talk openly about our challenges. Daniel has started to feel more comfortable and less confused knowing that I too have similar challenges. It has helped him even more to know that Ariel and Joshua have also had similar challenges. It has helped their relationships because it has helped his confusion as to why they respond certain ways.

I admit after I got home I struggled with feeling embarrassed about my meltdown.

My step mom texted me later to see how Daniel was doing. (He was doing fantastic and has been. Needs additional breaks and downtime, but we can do that!) I told her that I was struggling with feeling embarrassed, but I knew that it would pass. No one said anything to me to make me feel bad; they understood that it was a response toward other things. They may not have known the full extent, but they understood I was overwhelmed. I have longed for such wonderful experiences with my family. I find myself feeling an array of emotions about all of it, the tears start to well every time I think about it – they are good tears and cleansing tears. My heart swells at Daniel experiencing such love and acceptance; I feel it for Ariel and Joshua too. It is just a little different with Daniel though, I am not sure how to explain it.

I think anyone who has felt what I have throughout my life may understand what I mean.

When you feel that sense of being rejected, not belonging, confused by relationships, one could understand how amazing it is for someone you love to not feel that, especially your child who is already rejected by so many in our society simply because they are Autistic. Because of lack of understanding, denial, personal fears, etc … To be rejected by family because of it contributes a certain amount of pain that I have no words for, and I know there are many families who know this pain. It has moved me beyond any expression to have my family be so embracing of Daniel and us. It has changed something in me and given me a new sense of belonging, I still struggle with that. It is not all washed away, I have years of triggers, situations, confusion, and pain that will not disappear – it may lessen though. That does not mean it will not creep up and linger all sorts of distortions in my mind at some point, the difference now is that I am able to use my voice, even when I feel afraid.

There is so much going on in my mind I cannot get everything out.

I would like to say, if you read this and your family has not been accepting or even open to understanding autism you are not alone. For years, I felt alone and hurt feeling that my family rejected us because they did not understand or want to understand. It takes time to process autism; it makes it more challenging because there are such vast views and ideas. It took me time to work through my own process for Daniel and the process of accepting my own diagnosis. Trust the process, find people who can and will support you now, right where you are at, seek out people who build into you – it may not be family at this time, that is ok. Because I found people online that have supported me in healthy ways, I was finally able to articulate to people in my physical life what I needed and wanted in ways of support and relationships. I cannot give clear ideas sometimes, there are days when the support I need is to be there – no talking or touching just there. It can be in a text, a facebook message, or in the same room.

If you can find people who will support, stay (physically or virtually) with you, and accept you when you can and cannot express yourself, I think that is a good thing.

3 people like this post.

First Week For Daniel At Summer Enrichment Program

I thought I would give an update for the first week of Daniel’s summer enrichment program, that way he and I could have written memory of it. Keep in mind the week before my mom was in town and we not only socialized much more, but we also did several new things. In the past, for our family trying something new had the potential of taking anywhere from one day to three weeks recovery. A constant flow of socializing caused hours of Daniel being overwhelmed leading into nonstop meltdowns no matter how much he loved it or enjoyed himself. Though I admit it was (and is when it happens) tiring and taxing on me, my concerns for him trumped what I was going through. I will say it over and over again and I do not care how many times I repeat myself, it brings such joy to my heart to see him be able to enjoy himself and be happy before and after these things.

After saying all of that, the first day was intense to say the least.

Intense is the best word I can come up with to describe it because it was not a bad experience, but it was a rough one. Daniel and I have never been away from each other for that long of a period that was not a family member’s home or our own home. I had never left him in the hands of teachers or therapists. Have I been overly protective, yes. I felt it was my responsibility because he was unable to tell me if anything was wrong or had happened to him. However, I also did not have opportunities to do things like this for Daniel either. Had there been options that we could afford or been qualified for I probably would have tried them. (Cautiously and wisely) He has been able to communicate the things that are affecting him or causing him stress so this makes me more comfortable.

I also, trust the staff and the facilities so I feel this is a perfect fit for him to try such a big adventure.

I digress. I have a lot stuck in my mind. We prepared as much as possible for several days; they sent an email with pictures of the room, staff, and teacher. He had already met the teacher so that was a bonus. We discussed that I was leaving him for three hours, but then I would be back. We picked out the snacks he wanted, packed his backpack, and picked out the clothes he wanted to wear. I made sure that his morning went as peacefully as possible without any glitches. He was excited, happy, a bit anxious, but willing to give this whole unknown thing a try. He was still doing well when we got there, but then one of the boys happened to be loud. There were several who used loud vocal stims, which I expected and had already told Daniel about to help prepare him.

However, that being his first experience set the tone for him.

I watched his happy face turn to panic and fear. I did everything I could to help calm him, he wanted to leave. He was begging me to take him home. I couldn’t. I ended up staying in the room, but trying to let them guide him and help him. I knew that he was on the verge of full on meltdown, but I also knew that he had continued to try things and looked interested and curious. He was still watching the other children and I felt that he really wanted to participate. It was the sounds that were too overwhelming. The loud, unexpected sounds sent him into panic, but I listened to my “gut” and decided that it would benefit him to stay. I felt that I was making it worse by being in the room so I told him that I was leaving and walked out. I knew that the environment was a positive one and felt that they knew how to help them. It was hard though.

I heard him crying, and then after a little while he calmed down.

I tried not to look, but I was a mess so I checked on him and he saw me. Urg! He got upset again and calmed down. THEN, I thought I heard him crying and I could not control myself I went to check on him — he saw me and lost it again. I didn’t think he saw me though, but he did. :-( It was one of the hardest things I have had to do. I questioned my decision the entire time. I sat in the hallway almost in tears and panic myself. I fought the urge to bust open the door, swoop him up, and save the day! I wanted to comfort him, tell him that it was ok, and take him home forever. I knew that I could not do that. I knew that Daniel needed this and so did I. He needs to learn from others. He needs to experience independence. He needs to learn how to be with his peers without me around. He needs the experience from other adults who care about him too.

With about a half an hour left the teacher came into the hallway and told me that he needed to use the restroom.

She said, “He gets upset every time he sees you.” She was kind and did not tell me to go — she could have. :-)  I knew that I needed to get out of sight, so I hopped up and ran out the door to my car. I sat in the parking lot for the remainder of the time and just kept hoping that my gut was right and that he was not traumatized or anything. I went to get him, his little brown eyes were puffy, his cheeks were red, but I could tell that he had not been crying for a while. I was so proud of him for sticking in there. He did try some things, which in my book was amazing because I knew how overwhelmed he was. We had gotten a solar-powered owl for him and decided to give it to him when he got home to help establish a positive trigger, just in case. There was a slight moment where he was getting upset again because his solar-powered flower was missing.

Solar-powered owl and me saying, yes, to going to the Dollar Tree helped bring some peace.

I could not say no. I knew how much it took for him to try all of that and to keep going. He worked really hard. I did not care if it felt like a reward or not. He deserved it! When we got outside, my fears and anxieties diminished. He was smiling and happy in an instant. I got him to the car; he took his headphones off and said, “Ok, we can go to the Dollar Tree now.” I was a little taken aback. I asked, “Are you ok Daniel?” He said, “Yes, I was just overloaded in there.” I asked, “Did you like it?” He said, “I don’t know.” I dropped it so he could process. I knew he would talk to me later, but I also knew that he did not say, “I am not going ever again or I do not want to go back.” If he does not like something it is done. There is no going back and he will have nothing to do with it. I let it go until later, when he was in a peaceful and jolly state I asked him about everything and we talked a little more.

He was proud of himself for staying and trying new things.

During our discussion though, I asked him why he had gotten so upset whenever he saw me. He said, “Because I wanted you to come get me. I thought I was going to live there.” Oh, my. I asked him why he thought that I would leave him there to live because I had repeatedly told him that I was coming back at 12 pm. He was not sure, but somehow in the midst of his panic state he had concluded that I was leaving him there to live and he would not be coming back home. Poor guy, that had to feel terrifying! I reassured him that would NOT happen. The next day, I fixed his noise reducers to muffle out even more noise. I went over the schedule; I told him that I would not be staying, but that I would be back at 12 pm. I told him that I would not go into the room with him anymore either.

I asked him what they did and went over that to help him become more familiar with the routine.

I explained different types of stims. He had a lot of questions about the vocal and noise stims so I answered all of his questions and reminded him that he too has some loud vocal and noise stims. He said, “Oh, yeah. I do.” :-) I explained to him that they are doing what he does with his stimming and that helped him to understand. He has not experienced being with Autistic peers, some of them are verbal some are nonverbal in his class. They vary on the spectrum, I am pretty sure they all have some sort of language or communication delay/challenges. I reassured him all day long and the next morning that he was going to do great, have fun, and now that he knew what to expect he could feel more comfortable. He agreed with me. The next day of his class, I took him earlier so he could see the other kids arrive to help him prepare. He sat on my lap and watched them come in.

He was smiling at them and had a genuine enthusiasm to go.

I took Ariel and Joshua with me this time too for additional support and comfort for him. When it was time to go in he got up, said good-bye, and went to class. I had a feeling that he was going to do great and have a wonderful time. I was right. He did fantastic! He still has not decided if he “likes” it or not, but he is willing to go back and seems to be quite happy to be there. He will tell me when he is ready. This was only the first week; I am sure by the end of the eight weeks he will be upset that it is over. I will share more of what he is doing and learning as the weeks go by. This was a lot of emotions and growing for the both of us. I am very happy for him and excited to see how much more he does. I am not sure about this coming week, it could go either way because David is going out of town so my schedule will be off which makes the household routine all off. Plus, daddy being gone is always a change that takes getting used to.

I think it will be ok though, I have a lot of fun things planned — swimming, the splash pad at the Y, parks, training for their marathon, maybe some artsy stuff so I think it will all be ok.

2 people like this post.

IEP: Components to Consider When Seeking Accommodations II

Continued  from: IEP: Components to Consider When Seeking Accommodations

To give clarity about these posts, I am giving suggestions, insights, and trying to bring some awareness that the needs of our children and their goals should be based upon their specific strengths and challenges. This is supposed to be the purpose of the Individualized Education Plan (IEP), but I have observed from reading and interacting with parents that many times terms are blanketed into one thing such as working on motor skills, but no one has looked into dysgraphia, in some cases they have not even heard of it. If there are issues with following instructions, unable to follow instructions, disorganized, repeatedly looks as if they are listening, but do the opposite or their attempts are different from what you told them some claim these to be behavioral problems.

Or automatically ADHD, there could be other things to consider — dyslexia, executive functioning dysfunction, or even taking time to observe/ask about sensory sensitivities.

To take it one step further, ask or observe if there are any social issues that may be happening. From my personal experience, I have had moments when my mind gets so confused by a social interaction that I cannot focus or discern what I am being told or asked. This happened to me as a child and many times I was able to recover quickly when I was (am) able to understand the situation. Of course, this is not going to be all the time and every situation is different, but by adding accommodations/goals to an IEP for social circumstances could benefit a child and teachers greatly. If they struggle with math has dyscalula been considered? When they become overwhelmed with sensory issues have the specific ones been broken down and was accommodations/goals written for them. I go through those and several others in my next post.

This sounds like a lot and it is, but consider what the child/person is going through. 

We have to navigate through a world that most people around us can filter through much easier and comprehend their surroundings much quicker. This is not quick and easy for anyone and I loved this comment that Shelien left on my last post.

When I first began teaching I found it very overwhelming when I’d read an IEP with 15+ adaptations. What helped me was to have the parent/child identify the most important 2-3 for me to start with. Then, once I’d incorporated those it got easier to add more. Testing accommodations were often a priority to start with, and then we could work “backwards” to ensure student got practice using the accommodations on a daily basis. And, once you’ve gotten familiar with each accommodation it becomes a lot easier the next time round!

It is a lot to consider for teachers as well, which is why the IEP should be a team effort with everyone’s input. For the teacher meeting your child for the first time or working with an IEP at first, maybe limiting the adaptations to focus on the most crucial that will make the most impact for the transition. When it comes to an IEP it can become systematic causing the identity of the child to be lost and wrapped up into goals, accommodations, frustrations, and yes, even intense emotions — if you have been doing them for a long time, or feel defeated in fighting for your child’s needs or even being a teacher feeling your own set of frustrations possibly this will give some reviving thoughts. I don’t know, I am just sharing my thoughts and hope that they are helpful in some way. Before I used virtual school, I home schooled on my own. I now use Connections Academy. I am not sure how they are for each state, but for us they have proven to be exceptional thus far. When I was homeschooling on my own, I knew at some point I may need to enroll Daniel into a charter school, public school, or some sort of alternative school.

In order to help me understand somewhat the process of an Individualized Education Plan I created my own using information that I found online that explained them.

I did find these for those who are homeschooling or considering it. HOW TO WRITE THE SEP
Step by StepHomeschooling Your Struggling LearnerQuestions and Answers for Parents of Special Needs Children I wanted to observe Daniel to learn his needs, ways to use his strengths, document his challenges, and create goals. Of course, I accommodated him, I do every day that is part of our daily lives as special needs parents, but doing this process surprisingly helped me. Not only with understanding myself much more and making sense of my school years, but it gave me more confidence to know Daniel’s and it helped equip me to know what to ask for when the time came to create an IEP through the virtual school.

Since I had never gone through the process with an actual school I was concerned whether or not I understood or had enough knowledge.

I always do that though, hence, why I research something until I feel that I have enough information – that can take hours, months, even years (decades!) depending on the topic. I was open to learning more from the process and wanted to learn as much as possible through it. I did learn a lot from it, from the teachers and the therapists too. I am still learning, love that! From the beginning with homeschooling Joshua through kindergarten I knew that he was struggling in his own ways. I made my concerns known with his first grade teacher after several weeks into it. I felt that my requests were unheard and my concerns were invalidated by his teacher. She assumed that by repetition and constant practice that he would improve. I tried those things and it turned into a nightmare for him and it was tough on the both of us.

I did my research and found ways to help him on my own.

I knew that he showed many signs of being dyslexic, as well as dysgraphia, and Aspergers. I also, I knew that he would need additional help. I told her my concerns and still my concerns went unheard and she seemed dismissive. I mentioned my concerns to Daniel’s special needs teacher and thankfully she listened. At the beginning of this year, we went through the process for Joshua obtaining an IEP that has helped him so much this year. Both boys have had an outstanding year. However, I was specific and detailed in my requests and in explaining what their challenges and strengths were. This has taken time, but well worth it. This brings me to my next point, you know your child(ren). You have the ability to share with their educators/therapists their needs, however, you may be in the same position that I was in for a while which is that I could explain responses, stims, behaviors, triggers, but I did not know why they were happening or what to call them.

Because of my limited knowledge, many of the things I observed I considered behavioral until I started to break down and journal my observations. 

This does not have to be long and detailed. You can get a small calendar or a composition book and date the pages. Any time a specific response happens, when you get a moment after the fact, jot down a quick note. Anything you observed, remember it does not need to be exact details, but just those things that pop out to you. Food, smells, people, new situations, specific homework, the mention of homework, the act of writing, thinking about a question, sights, sounds, anything. You can even make it as simple as one word as long as it is something that can help you and possibly detect a pattern. This information can lead to deciphering what is happening and why it is happening. It can give the information you need to go into the IEP’s feeling that you are confident in what to ask for and working with the IEP team for your child.

For me, I was unsettled with generalized definitions.

There are many times with Daniel that there can be several challenges overlapping and triggering each other, it is difficult to distinguish between them. Sometimes the accommodations can parallel in helps so you are not exactly sure which one the accommodation is helping, this can also trigger hindrances when they work against each other.  However, once I understood Daniel’s comorbid challenges and discovered his learning challenges I was able to find words, definitions, traits and symptoms to help me understand his responses and see how I was setting off his triggers at times. (It is not all Autism and behavioral problems.) It gave me more insight into his strengths as well and ideas on how to use them to help him. Gaining this information helped me to explain to his teachers and therapists how to work with him. It helped me gain knowledge in distinguishing when Daniel is having physical problems causing him to be upset or if it is the actual tasks, directions, situation.

Some days I still cannot tell, especially, when he is unable to communicate. BUT I do know that the majority of the time it is not behavioral. 

It is challenging to distinguish each day; I am not going to say that it is not. We have some seriously challenging days. Daniel can have different challenges or strengths on any given day, but it has become a little easier to know when to try to motivate him to do more and when to let it go. His sensory struggles are not always consistent; the only one that is the same each day is sound. He is highly sensitive to sound and if one slight noise affects him the rest of his day is a whirlwind of triggers that set off different sensory, anxiety, specific need for routines that he has transitioned from, and/or elimination of certain foods, again. It can be a gamut of things that I try to help him with. I am not sure if this is common for other Autistic children, but there are probably a number of you who can relate in some way.

Joshua and Ariel are fairly consistent. 

Anything that changes is usually triggered by some sort of social dynamic, but there are days when the boys trigger each other and it takes time to bring balance. These types of things, I can somewhat control in our learning environment. I can determine how much and what type of schoolwork they do. If you do not home school, how do you get that too for your child? With Daniel’s therapists and when he needs to speak with his teachers I email them ahead of time and tell them about his day if need be. If there is a thunderstorm I tell them because they make him in a frightened/anxious state. If he was frustrated about anything and could get easily upset I tell them. I do not expect them to stop what they are doing, but it gives them an idea of how he is feeling and lets them know not to push too hard or do things that require too much processing. I am not sure if schools do this or not, but if it were possible to make a quick reference of how the morning before school went, any heightened sensory issues from the morning, or giving a quick note if they did not sleep well the night before etc … could be helpful to both the teacher and the child.

Ask the child as much as possible; observe their progression and feelings about what they are doing. 

For instance, when Daniel was nonverbal traditional PECS did not work for Daniel. He did not get it or like it, but when I changed the images to “real life” images and sang sentences, questions, and answers in tunes that he was familiar with like “Twinkle, Twinkle Little Star” Daniel was more responsive and interactive. His communication was not verbal, but it was musical. If you know these things about your child communicate it to the team and see what can be done. Come up with specific goals, if you were their teacher what would you want most for them? It is going to look different for each child and each age, developmental delay, language delays, and different forms of communication are to be considered there is no way for me to give exact goals or accommodations ideas. This is for the parents and the IEP team to decide. I would suggest implementing a plan on learning and seeking their way of communication along with teaching.

At home, I am to control the sensory environment and make it as accommodating as possible in many cases that cannot happen in a public school.

My kids walk around, take breaks, do school on the floor, sitting on exercise balls, holding hand weights, are aloud to talk, and engage in a lot of movement while doing school. This has proven to help them very much, but it is not realistic in a public school setting. So what can you do? My suggestion would be to think about when your child is most relaxed, at ease, and seems to feel happiest/safest, share that with the IEP team and see what can be done. Outside of the IEP, consider what you can do to make them more comfortable before going to school. On particularly, challenging mornings will comfortable clothes or their favorite clothes make a difference? I know it may sound silly, but when Daniel is hypersensitive and we need to go places or try new things I put him in green colored shirts or shorts. Green is his favorite color and automatically puts him at ease, he may still be hypersensitive and could very well have a meltdown, but he recovers sooner and feels safe. Are there any toys, items, some kind of object that will bring them peace throughout the day? Can that be allowed to stay with them?

This may sound a little off, but for me one of my stims that I had all through school and still have is chewing gum.

I had gum and do have gum in my mouth practically all the time. I used to sleep with it! Not suggested. I learned to hide my gum because my teachers would not allow it and when they made me throw it away I would spiral and become disruptive no matter how much effort I put in trying to not to. I know that you cannot get exactly everything, but if worded correctly and placed in the IEP there is the possibility of getting fairly close. I cringe at even suggesting that you write anymore things down, but we all have mounds upon mounds of paper work that we have filled out for our kids. Binders full. We have answered so many questions until we cannot think anymore. Many of us can write down virtually every single thing at this point blindfolded. (Some of you may be just starting out on this journey, try not to get overwhelmed. Take breaks and focus on what you can, reach out to trusted people or even to those like me who are blogging.)

Unfortunately, what can happen is that we can become disconnected from it.

It is like when we become overexposed to something we can no longer have a response or are able to have clear thinking about it. It is exhausting going through it and if you have been going through it year after year even if things have gone well it can become like a task to check off a list. If it is a negative it can be a source of great stress, anxiety, anger, and frustration. Maybe stepping away, or finding someone with a different perspective can help you see things that you can no longer see would be helpful. After that, maybe you can go back and consider things that suddenly pop into mind that could be a trait or symptom of something that you have not considered. This does not have to be taxing or stressful, go with what you intuitively know about your child and with what you have observed. You can do this and I am most certain that it will build your confidence in knowing that you do know your child.

With everything that you see as a challenge, next to it write out strength about them. 

Remind yourself of the qualities that you love the most about your child(ren). Speaking from my experience, be ready and willing to accept that you may have misread, misunderstood, did the absolutely wrong thing at some point, and that you may need to change your perspective in what your child needs and how they need it. It’s ok, accept, change it, and move on. Empower yourself by wanting to learn new things and by looking at whatever the special need and/or learning challenge(s) there may be in a new way, step back, and try to think differently. Challenge yourself and your paradigms, think of any negative associations and try to work through them — face them. All of this is a journey that is not only about your child’s educational needs, but their emotional needs and your relationship. What they receive now and how they are treated by you, their teachers, and through the IEP process will impact how they feel about themselves and who they are for the rest of their life — yes, it is that important.

How they are perceived and treated by the adults in their life can set the tone for how they are treated by their peers. 

Next post: IEP: Components to Consider When Seeking Accommodations III (Breakdown of sensory processing, learning challenges, behavioral considerations etc …)

1 person likes this post.

The Relational Loop – Panic Trigger

I was doing fairly well last week, I had a lot going on so I did not have much time to consider the other things that were silently lingering in the back of mind. There was another silent, but loud at moments, thing that was going off in the underlying of my mind. It was the thought, How many times do I have to loop about this? It has been since childhood! Of course, it ruminated for a little while and the more it trickled its voice into my head the more that the internalized triggers and outward triggers started to explode bombs through my amygdala. The additional information from emotions, sensory, and environmental change were also at play. We have had terrible storms come through, but it was beautiful and warm for several days as well. I love being outside in the warmth, when it is nice outside that is where you will find me.

However, when the weather suddenly changes, pressures get all out of sorts, the temperature drops my mood goes with it.

(Daniel gets affected by weather changes too and his anxieties rise.) Even during some of my most anxiety ridden or challenging depressive times, I would find some hope and peace in the great outdoors, I love the sun. Weather changes make a huge impact on me. This year has been a mess of hot and cold and unpredictable weather patterns which, is contributing to my anxiety. I am also, “silently” processing in certain parts of my mind the fact that I finally openly shared on my personal facebook page with family and older friends that I am diagnosed Aspergers. I went further and emailed my dad as well. Those alone are lingering anxiety webs that are attached to many triggers no matter if the outcomes were to be positive, negative, or neutral – there is no way around me going through anxiety with that. Overall doing that has been good for me and given me a new confidence.

 I can tell you all of this.

I can logically and rationally explain to you that it was all contributing to my panic attacks and sudden bursts of hyperventilation almost complete sobbing moments. There was nothing I could do except remind myself that I was in an anxious state. I have written about my anxious states before, but I am not sure I have explained this particular one. I probably have when I am in that state or recovering from it my memory is lacking on those particular things, but I can remember in great detail a conversation David and I had 10 years ago! I have different ones, some have to do with my inability to get things done. Sometimes I have separation anxiety even though I do not necessarily want to talk or be around people I still need them here with me. I will get anxious if David has too many meetings. It is mostly due to routine change. When I feel things are out of order, my house, our school schedule, my work out schedule, my shopping schedule, those types of things.

My anxiety can manifest in different forms and is triggered from specific situations or past traumas.

This one I am referring to is my relational anxiety loop, however, it can parallel my other loops — such as what I call my executive functioning chaos loop. I go through cycles of being incredibly organized, able to multitask, and complete a ton of things. Then, I spiral and seem to lose any and every executive functioning skill I have. My laundry piles up, the completed schoolwork sits in piles needing me to file, I forget scheduled meetings no matter how many times I look at my calendar, I lose track of time, the house is overflowing with toys everywhere, I cannot think of things to make for dinner, you name it my mind is disheveled. This chaos for me can enhance my relational anxiety loop and vice versa. When I am triggered into a relational anxiety loop any social skills that I have learned are basically gone.

This makes no sense to people because one day I am able to talk and seem to “fit in” or at least I am more at ease.

On these days, I can go into a protection mode that I adopted as a coping skill at some point in my life, which is to point out all of my “weirdness” and whatever is in my mind comes flying out causing even more anxiety and creating more loops. I have been trying to work on this, but it takes time to change old habits. I know that Mother’s Day, triggered me in many ways. I can prepare for some of my known triggers, but others I seem to set off on my own without realizing it until after the fact or they leap their attack and blast my mind into confusion. I sit in shock wondering where that came from and what the heck it is. They are invisible attacks without clarity. They take time to dismantle and are normally linked to an entire chain of other triggers. My mind goes into detective mode and I pull a Sherlock on my responses, behaviors, emotions, thoughts, and sudden new or revisited special interests.

I pay attention to the music that I am drawn to, the poems that pour through my fingers and the images that my mind finds comfort in.

They all lead the way to some reason for the sudden burst of anxiety bombs and PTSD symptoms that manifest, that many times leads to depressive thoughts, but even after all of that there is still a vortex that spins with a constant unknown. It is the allusive anxiety entity with no name, or pulling from a biblical reference, Legion because there are many. (Not demons, just many anxieties traipsing around in my mind.) I tell you all of this, I can write everything out in great detail and explanation, but it is still there. I did well this time around with a few hard core moments. When panic strikes me it is different than anxiety. My anxiety started to stir, fester, and by Sunday I was fighting tears all day long. During the bouts of anxiety the panics would burst through. They come on fast, hard, and feel like they will never end. I have learned that if I feed my panic I make it worse and it causes even more tightening in my throat and chest, dizziness, fainting feelings, and nausea. (among these other symptoms link here, you can image how terrifying it used to be to have this happen and not be aware that panic attacks existed.)

The after affects are far worse too, such as my depressive thoughts, negative thinking, irrational thoughts, and emotional/physical fatigue.

I embraced the panic feelings and they were fairly short. I have not had panic attacks as bad as this in a long time. I am so good at hiding them and my anxiety, I trained myself to internalize and fake my way through until I got (get) home or in my private space, from being in school, around family, friends, and work. Sometimes though, I am so depleted that I cannot and they manifest physically. After the weekend, I was an internal mess filled with social confusion, fear, the desire to lock myself up into a room and never speak to another person again. I was overcome with not knowing who liked me, if I had said the wrong things, wondering if my actions and words had been wrong, questioning everything about myself. There are times when I do need to step away socially.

I need that break in order to find my balance.

There are other times when I need to push myself to continue to be social so I do not cause myself to wither in anxious thoughts and isolation. I started telling myself maybe I should stay home from the Y and not interact with anyone. I knew this was not the best for me, but that has taken time and I admit it takes a lot of effort to walk out the door when I am consumed with anxiety and the threat of panic at any moment. I do not want to break down in public! I felt as if I was overcoming some major fears this weekend and that it was important that I was around people who have been positive influences. Many of them have been at the Y. The best part is that I do not have to socialize too much with conversation. We are there to work out so I could smile, laugh, sing music, and be physically active all of the things that my brain needed. I did struggle.

I had panic attacks all day on Monday from the simplest of things such as when I “liked” something or commented on face book.

I had a panic attack after I was finished talking to the boys OT, I still do not know why. I had a panic attack about whether or not I said something that was ALL about me concerned that I was not being empathetic, but only talking about myself. I was hypersensitive about being selfish, that trigger was one trigger that manifested from childhood related to Mother’s Day. I could not tell, my mind could not perceive if what I was saying was focused on me or not. When I am trying to show empathy and support I tend to use personal examples, but when I am full of anxiety I am unable to interpret my words and other people’s words very well. My mind races, it scans over everything I did and said for the day and I can sink into depression. I get worried that I am not being sympathetic enough or that I have hurt someone’s feelings. I made a comment in the morning during my TRX session saying that I was not going to buy a tan.

I meant no harm, I literally meant that I was not going to pay to go to a tanning bed.

Everyone else knew that I did not mean anything by it; as a matter of fact most people just let it go. Not me. I thought of the people who may have gone tanning, I thought of my aunt who was there and goes tanning and I felt awful wondering if she took any offense. I logically knew that she did not. I knew that she probably did not think twice about it, however, all day the scene continued to play through my thoughts and I felt bad. I felt so bad that when I saw her again later at the cycle session I told her so that I would stop fixating on it. She confirmed what my logical thoughts already knew, she did not even think about it. All day I was hypersensitive to what I said and what I wrote. I felt fear and panic race through my body. This panic mode also makes me feel like my heart is broken.

It is that feeling when you feel crushed emotionally and you have physical pain, it is like that constantly.

I feel sharp stabs in my heart area when I read people’s words or they say something I cannot understand. When I am in this heightened state social confusion does that to me. Anxiety spawned by social confusion does that to me. Panic attacks triggered by this do that to me too. After all this time, I have gained much understanding and new ways to cope, but it still happens. I continue to find myself struck with panic over no “real” threat. Through the years for me social confusion, misunderstandings, misinterpretations, inability to understand my social environment has felt like “life threatening” situations. It attacks the very core of me, my identity, and all the things about me and when triggered my flight response manifests with intensity. However, when I have been in situations where my physical being was in jeopardy my fight response came full force, but it had to be a threat of physical violence if it was emotional or in a sexual context (which my mind has categorized as social confusion) I sank into the depths of my internal world taking flight to my place of escape in alone solace.

This time around with this loop I did find it pass much sooner.

My mind was able to find more moments of peace and rational thinking. I refused to let negative thinking overcome me by trying to remember all of the positive social interactions and relationships that I have now. It did help, it was not as painful, the depression has not become all-consuming and I have found that I feel a little bit stronger. I am not sure this will ever go away. I have written so many things about anxiety. As I sat down to write this I wondered if it was pointless, are people tired of hearing about my constant social confusion and anxiety? Then, I thought about all of the people who continue to write about their situations and how much it helps me so here is the post. Now that I feel more balanced I hope to get on with that IEP post I have been working on! Thanks for reading folks it means a lot to know there are people out there.

Related posts: 


5 people like this post.

Fear of the Fly

The warm weather lately has made it possible for us to venture out into the neighborhood and enjoy our backyard. Though the road in front of our house is a little busy at certain times of the day, for the most part I can take the kids up front and not worry too much … well as much as when we lived in the other house. It has been interesting, in this neighborhood everyone is very sociable and has come up to me to introduce themselves. If I am in the front yard that means that I have already prepared myself for such social scripts because I have had that happen often enough — it still startles me for a second or two and takes me some time to try to get words, it is challenging to remember to shake their hand if they put it out, or my name, the kid’s names, and that I have a husband, what’s his name!??

I try to remember or pullout those scripts quickly, but sometimes the words get jumbled, many times.

It’s ok; people either do not notice or make some sort of small talk waiting for me to answer. I am usually distracted because I am watching the kids. People tend to be forgiving of social awkwardness or slight prolonged silence when you are taking care of your children. It is a good thing for me to have my kids around because they keep me grounded and focused for the most part. Several of the neighbors have popped over to introduce themselves as I was teaching the kids to ride bikes. As I took them around the neighborhood to cul-da-sacs to practice everyone has been friendly and kind. We happened upon a brother and sister who are close in age to our kids. The mother saw us riding bikes and came out to introduce herself and her children. Her kids did not come running up to socialize, but the mom was excited because she said there are not very many kids in the neighborhood.

I hope we can make friends with them. :-)

As we have been out and about it has been a good thing, but unpredictable and challenging for the boys. Ariel is not having any issues with riding her bike. They do have training wheels at the moment because they have not been able to learn to ride bikes. We did not live in places that were safe enough or we could not afford to get them bikes. Now that we have them I am excited to teach them. I got David a bike for his birthday in hopes that we can ride as a family this summer. I love to ride my bike! With meeting a new person there is always that moment when I see on their face the look of confusion when Daniel comes up or he asks questions. I instantly have questions flood my mind as to whether I should tell them right away that he is Autistic so they do not say anything negative to him or something that upsets me or him.

People have said and do say some ignorant things or they stare — who is socially inappropriate?

I tend to trust my gut instinct, it is on a need to know basis around here. So far, everyone has been kind but at times perplexed at how old Daniel looks because of his size. It is confusing because he looks like a “typical” young boy, but when he interacts he does not sound or respond in the ways expected for a nine year-old. I do not care what others think, however; I do get concerned about how Daniel feels in regards to how people look at him — some days, he is highly sensitive to people. He will ask me why a person looked at him like that, why they talked that way, why they sounded a certain way, or why their body moved the way it did. He is very observant of the entire “hidden” social goings on, but he does not know how to read them.

Me too, we soak it all in and try to make sense of it.

As we have been doing so many social interactions, sensory input, and learning new skills such as bike riding and moving into new grade level skills Daniel has absorbed everything. All of us have, but he has been responding to triggers with utter panic. Certain things that slightly upset him have sent him into terror. An example being, he could not find his glasses the other day. He went from I cannot find my glasses to I cannot find them they are gone forever then, crying and getting upset with me. When I found them he instantly went back to happy go lucky Daniel and all was well. It has been like this for a couple of weeks. We have done A LOT. He has been amazing! He is proud of his new skills and excited to learn/do more, but he needs down time.

He forgets, just like I do.

All of the kids struggle with this, but Ariel and Joshua can regulate to some extinct without me. Joshua struggles more so depending on his day. Daniel does not understand this and he also, does not understand why he responds the way he does at times. I try to keep a log in mind of all that is going on because the more that is going on the more mental, physical, and emotional processing that is going on. This heightens all of our sensitivity to triggers. It makes our sensory challenges hypersensitive. It makes our emotions intense and we struggle to filter through emotions which are already a difficult task on our best days. Since I am on my own this week, let’s just say my mind is chaotic. I am fatigued mentally and physically, but I feel good so I keep going.

However, for some reason on Sunday I was struck with sadness and the desire to be alone.

That is not possible and I know from past experiences that when I am in this state it is not good for me to isolate. In this mind frame it makes it a bit more challenging to remember how much the kids are going through and processing, we are all out of sorts because our routine is different from David being gone. David is gone, we do fine when he is gone, but it is change and it takes adjusting. It does not matter if we are encountering positive situations/emotions or negative ones, we still need to process and that requires the mind to readjust. It is like a see-saw going back and forth, trying to figure out what everything means, how we feel, where to categorize it all, finding that balance and seeking to find connection with our body and mind.

At times, this can manifest through silliness.

It can cause us to have bursts of uncontrollable energy. It can come out through unexpected tears. It can erupt through anxiety. It can engage our hyper-focus toward something new or an old special interest or it can painfully pour out through fear or depression. I personally, am having a spectrum of manifestations ranging from silliness to depression. :-/ Sadly for Daniel, it has been fear that sends him into panic this week. It started with a bumble bee in the back yard. One of them buzzed by him and startled him. From that point on if he saw a bumble bee, a honey bee, or a wasp he started to panic. I tried to console him and rationalize that they were not coming after him. He did not believe me for several days. It caused him to want to stay indoors which tells me just how scared he was because he always wants to be outside.

I ended up cutting off all of the pollinating flowers from the bushes close to the house so he would feel safe.

I sprayed all around to try to keep them away. It was working, until a fly got into the house. I had no idea what had happened I just heard his voice in terror, yelling for me. He had gone inside to get a drink of water. I ran to the house and I could do nothing. It took some time to find out about the fly, in the mean time I was afraid someone was going to call the cops because the poor guy was in such a fight-or-flight mode that he was running frantically in the yard trying to escape. I had to chase him and gather him up because he was running to the front of the house, I was afraid he would have run into the street. He wrestled me and cried like I have never seen. With Ariel and Joshua’s help we were able to figure out there was a fly and Daniel was able to confirm with a head nod.

I went inside and got rid of the fly.

Daniel was all better again, but still fragile from all of that. I asked him why the fly upset him so much he said, “Because they fly too fast and they make a buzzing noise.” He is afraid of bees because of that and that they have stingers. It is the unpredictable nature of the insects, but the root of it is that he has gone through many unpredictable things lately. Though many of them are exciting, positive, and what he wants to do they still cause upheaval in his mind, body, and emotions. He needs to feel safe. He needs to know that he will be comforted no matter what the trigger may be. I can recall many times throughout my childhood and my adult life when I have responded similarly. A flat tire has sent me into a complete panic attack then, calling my boss in hysterics. (It has happened several times.)

A time when I could not find my shoes, the shoes that I had planned on wearing for the day.

It resulted in me tearing apart the entire house, crying and being so confused. How could I have lost my shoes? Who stole them? I was going to be late! More panic and fear because being late is the worst! In every circumstance I was hypersensitive for a multitude of reasons. People have made me feel ridiculous, called me a “drama queen,” and even mocked me for my responses and because my triggers are so “silly, childish, not a big deal.” I asked Daniel if I could share this about his fear of the fly and what happened in hopes to help others recognize and try to be more sympathetic/empathetic to Autistic responses. He said, “Why yes, that is good.” This does not only happen with autism, it happens to those with sensory sensitivities, anxiety, depression, PTSD, C-PTSD, and even those who are under strenuous amounts of stress. When you are a child, who is unable to communicate what is happening you need parents/caregivers/teachers to be sensitive to these situations. Our children, people in general need to feel validated and safe when triggered into a state of fear.

Daniel has no negative association with his response to his fear, and he told me, “I felt safe when you got the fly.” 😀 

4 people like this post.

“But I Love It So, So Much!”

I have decided to read my posts about the kids to them before I publish and see if they feel comfortable with what I am sharing. All three kids were present as I read this out loud, it was a happy experience for all of us. I also, found that it helped Daniel with recalling events and talking about his feelings. Hm .. I wish I would have started this sooner, oh well I will now. 

This was Daniel’s third week of music therapy. The first week he was incredibly anxious, but that had more to do with all of the changes that he had been trying to transition into from my new schedule, his new schedule, and David’s new schedule. He was “happy anxious” about going, however; when we went he wanted me with him because it was new. After a fabulous first session, we ventured to the lobby to head home. I asked the accounts manager some questions and Daniel immediately went to a solar-powered sunflower that was sitting on her ledge. He asked me a ton of questions – I was not aware that so many questions could be asked about such a little object that had memorizing dance moves. :-)

Daniel refused to leave for several minutes, I was not sure if I was going to be able to get him to part with that little sunflower.


It became a bit awkward, but you know Daniel’s feelings and handling situations like that in positive ways take precedence over anyone else. Frankly, I no longer care if other people are uncomfortable. I am referring to a parent that was in the lobby waiting not the staff or therapists. They were all smiles and tried to hide their “ok, that is a lot of questions and quite an intense interest in a solar-powered sunflower” faces. We could not stay there all day so I told Daniel that we would look it up on the computer when we got home.

He begged me on the way to get him one.

This concerned me because he was getting too intense about it and could not think of anything else. I pulled up the sunflower and let him look at it when we got home. At this point, Daniel was saying things like “I need it. Get it for me.” We were not in a position to buy it. Literally, I know the thing does not cost much, but our funds were strapped to the point of not being able to get a $10 gadget like that a couple of weeks ago. He could not understand this and the more that he got upset the more that it became clear that I could not get it for him. Somewhere in the midst of anxiety he had latched onto this gadget and by 2:00 pm he was ruminating to the point of sobbing because he wanted me to get him one or go get the one at the music therapy office. I was baffled. Daniel had never responded like this with any object — let me rephrase, Daniel has never been able to communicate this with his words before, he may have been feeling the same intensity, but the sobbing was new.

 At one point, Daniel said to me “I cannot live my life without it!” 

It broke my heart to see him so upset and say such things. However, it was also one of those moments where I was so thrilled that Daniel was using those words in that context. I know he got a similar script from Joshua because Joshua uses extreme words to express himself. He does not mean a lot of what he says, and half the time I am confused because I have no idea where he got such ideas. He is such a sweetheart and has a sensitive nature and the world impacts him greatly. He expresses that in the only way he knows how – we are all learning around here to find our balance and gain better emotional regulation. [And always will.] It’s hard when you are not sure what you are feeling most of the time. I digress … a lot. When Daniel continued to tell me how he could not live without the sunflower I asked him if I could hold him for a little bit and talk to him.

He let me until he calmed down.

As things settled I asked, Daniel why do you feel that you cannot live without the sunflower? He said, “Because I love it. I like the way it moves, I love it so, so much.” I told him the main reason why we could not get it and explained that the other one belonged to the lady. Then, I explained to him why I did not think it was a good idea for him to get the sunflower. I reminded him of how certain movements get him too excited. He looked at me with his big brown eyes, filled with little tears and such heartbreak that I felt like the worst mom in the world and he said, “But I love it so, so much.” I have to be careful with certain items that I get him because particular movements, lights, and objects can cause him to get over stimulated which is not a good thing. He does not easily come out of it and he will ruminate – seeking objects that feed into that stimulation.

He loses his words, ability to focus, his eyes glaze over, he does eat, and he does not sleep.

Some things I cannot allow him to stim on for his own well-being. I have some stims as well that I have to limit or eliminate all together for the same reasons. Actually, everyone in this household does. However, with the sunflower I felt that it was not necessarily the movement.  Daniel had never expressed such deep connection with an object even though he may have similar wants or responses to items he had never been so attached instantly. I felt that the object was giving him a penetrating calm for his anxious mind. He was seeking something to focus on to help with his transitions with all of these changes. I decided to look for an object that was similar, but with different motion. I asked him if that would work and told him that we could go look at some solar-powered gadgets. He felt better.

We found a solar-powered frog on a swing.

He has no challenges with back and forth movement so I asked him if he would like that when we were able to buy it. He said yes, and the rest of the week went much better — filled with questions of when he could get his frog and reminding me of how much he still loved the sunflower. When we went back to music therapy the next week he wanted to see the sunflower, but he was happy because he was going to get the frog. We did need to stay for a little while, but he was much better with leaving it. He also, went into his session without me that day. It was his idea he said, “I will go in by myself.” I was happy that his anxiety had eased. On the way home he said, “Can I go to music therapy forever? I wish to go to music therapy forever. I like it so much.” I told him that we would do whatever we had to in order to make sure he could keep going.

He said, “Good.” :-)

His frog came in the mail the next day and he was filled with joy. He has taken it everywhere with him since he got it. He has also, told me that he loves his frog too. Yesterday, he went to his music therapy and he went to see his sunflower right away. Then, he happily went to his session AND composed a song about instruments with his therapist. The smile on his face when he comes out of each session is like singing angels in my heart. (Did I just say that? Geez, I did. I am a cornball sometimes.) One of the therapists mentioned that they found the sunflower at the dollar store across the street. Guess who had to go to the dollar store? She did not realize how much Daniel had connected to the sunflower. We went – no sunflower. However, we did find little valentine solar-powered cupid devils.

He wanted one; we got it along with one for Ariel and elephant one for Joshua.

I will try to make this shorter, it was not satisfying and Daniel expressed to me how much he wished he could have the sunflower. After watching him with the little devil cupid who had similar movements, I decided to get the sunflower. Yes, the sunflower should be here in a couple of days. I am not sure why he has connected to it like this, but he has and he cannot let it go. I told him that he would have to take breaks from it if he could not leave it alone or if it caused him to get too stimulated. For now he is ok with this. It is difficult at times to know when and when not to give him the stimming items that he needs. I am not sure what it is about the sunflower, I happen to have an attachment to sunflowers so I find it interesting that he has attached to it. We will go with it and see what happens.

Some remarkable things transpired from all of this.

Daniel has never sobbed over anything which, I interpreted as him truly caring about it a great deal. Whether it is the sunflower or what the sunflower represents to him it does not matter, it means a lot to him. He has never used words like, “I cannot live my life without it.” He has not been so open to allowing me to comfort him and explain things to him when he is in such an emotional place – although, this was kind of a new emotional response. In the past, he was not able to see the item again that triggered similar responses of “want.” I had to call ahead of time at a few different places and homes before we came over to have people put the items away until we left. He was unable to let it go and triggered an upset if he still saw the items. I am over the moon to hear what Daniel feels. I am excited to see how music therapy helps him. I will end with Daniel’s own words from yesterday.

“Mom, I love music therapy. I love going to there. I love the music. I love my, what is her name again? Her, I love her. I love going because of her and the instruments, and because I love that sunflower so, so much.” 

4 people like this post.

An Email To The New SLP

Right after Thanksgiving break we were taken aback with the sudden loss of Daniel’s SLP. (Speech-language pathologist) I received an email the morning that they were to return simply stating that she would no longer be at the virtual school and would no longer be Daniel’s SLP. This was a shock because she was so excited to return and continue to work with Daniel. The last day was an incredible speech session. Daniel has progressed so much working with her. There was nothing I could do it was over and we were at the mercy of the school and the therapists that they use. It took about two weeks to get him set up with his new SLP. I had my concerns about her, but have been trying to be open-minded. They only met a couple of times. I found it odd that she did not ask me anything about Daniel prior to meeting with him or afterwards.

She just went right to it doing whatever she does with all of her kids.

I am not sure if she has worked with a child like Daniel. He is a mix of the spectrum that quite frankly, I have not read many other people speak of. It is difficult for me to put into words, but Daniel is basically bouncing all over the Autism spectrum. That is the best I can do. He does not have fixations the same way that others do. He does not stay interested in things obsessively for long, just like his sensory challenges changing on a daily basis, so can his interests. He has some that stick with him, but he does not consume them the way that Joshua or Ariel do. It is hard to explain, but that is just another reason why rewards or withholding does not work. Not that I use that method, but I do know that the school and therapists have attempted to do that with him and it failed.

Daniel is about relationship.

When Daniel was completely nonverbal, I found the only way to get him to communicate was to be actively involved in what he was doing. Active took on a different action some days. One day it would be me sitting in the same room with him. Other days it was with me next to him. Then, there would be days when I did what he was doing I paid attention to how he responded and I did not push. He was responsive to this and our relationship started to develop to the point that I could figure out what he wanted more so than not. There was and still is the “not” days. That is ok, I have my “not” days. For instance, today I have no words or idea to how I feel. I know that I need something, but I am not sure what it is … I have to wait for my brain to catch up to my emotions.

However, I knew what I felt when interacting with Daniel’s new SLP today.

She was misreading him and trying to pressure me to do what she wanted. I would not budge. My priority is Daniel and his needs. It is much easier for her to bend to how she does things and work with him in a positive way to help him transition. It is much more challenging and it induces unnecessary anxiety in him to force changes. He has been on school break for two weeks, coming back to mid-year testing that gives no indication of how many questions are on the test because they are on the computer. I normally print out tests for him because it is much easier for him to process I cannot do that with these tests and I cannot tell him when they will end. Anxiety much? Visual processing overload much? On the first day back, he had to meet a new OT and was unable to say good-bye to the one that he had for over a year. He bonded to her and his other SLP.

He is sad.

He is grieving though no one seems to consider that. He does not know that he is grieving, he is just upset and does not understand why or how to process it. The last OT wanted very much to meet and do a good-bye session, but her schedule would not allow. I know that they have jobs to do and their schedules are full, but I really wish that people would understand how difficult this can be for children – not only special needs children, but all children. They bond with their therapists and teachers, even I had made certain connections to teachers and many of them I did not care for one iota. :-) It was hard for me to transition to each new grade and meet new teachers and kids. It was sad for me to lose a teacher that I was fond of and I would grieve the loss. I would also, feel the anxiety and fear of not knowing my new ones and then, trying to establish some sort of relationship with them.

Child hood is not easy; I know that many kids can bounce back from leaving or getting a different teacher.

For us, it is harder especially if we have made a connection and developed a positive relationship. I decided to write the SLP an email giving some insights about Daniel in hopes of improving the transition and to let her know I am willing to help in any way to make this a positive experience for Daniel. I am sharing here as well in hopes that maybe it will help others who have not seen it from this perspective. I am not angry with her I am just frustrated at the situation and feel unheard. I do not think the SLP is wrong, I think she has her methods and possibly they work for other kids, but I know that they will not work for mine. My intention is try to help her and Daniel be successful in their sessions and for him to continue to progress as he has been. I really hope it manifests into a positive interaction and opens up communication and understanding.

Here is the email. 


I thought it would be a good idea to share with you some things that may help with sessions. Daniel does not respond as some children do with a reward system. It does not work with him. It can work for a period of time, but it will not last. He does much better with connection than, with reward or withholding. He does not respond to reward he responds to connection. He may actually regress or not be as responsive through those methods.

For him, the show-n-tell is about connecting to you so he can work better with you. He feels that sharing something that he is interested in or cares about and you doing the same with him is building trust and comfortably. It lessons his anxiety and calms his mind in order to work with you. He does not respond to withholding. It confuses him and he does not understand the purpose. It spirals him into confusion leads to anxiety setting his mind into a state of “fight or flight” and unable to focus.

Daniel is very willing to work many days, but with all of these new transitions which are emotional and difficult even for a child who is not on the Autism spectrum, it will take some time for him to ease into it. I will do my part with helping him transition into the way that you prefer your sessions to be, but I will need time and I would like it to be as positive an experience as possible for him.

If you have a suggestion of “connecting” with him in another way before sessions start I would be happy to help the transition from the old routine to yours if you let me know. I can create a social story and help create a new script for him; I have already been working with him about every teacher and therapist being different. The real issue here for Daniel is that he was very much connected with Ms. L and his OT. He has now lost two relationships and people that he bonded with. I know that he is putting forth efforts to try to establish a working relationship with you because if he did not want to he would not respond at all.

Another bit of information that may help is that when Daniel is focused on specific things such as the colors of the checks it is not about that, it normally has to do with confusion – though you have done your sessions a particular way before he has not had enough sessions with you to override the script that he has in his head that Ms. L and I established. He did the same type of routine for over a year that script has been his source of comfort and connection.

He was looping about the confusion of old routine while, trying to redirect himself into a new routine. This caused him to get jumbled in order to try to stop himself from going into a meltdown he fixated. I saw today as a triumph for him despite at the end he was starting to get upset. He achieved a lot on his own; he used his words, and continued to try to communicate with you. That is huge for him. In the past, he would have shutdown completely or gone into a full on meltdown. He was not upset at you he was upset because he felt he tried yet, because he did not get to finish the plan that he had in his mind he was left unfinished, open-ended, any unresolved tasks cause upset.

When Daniel begins to get fixated there are numerous things that can be contributing, he is not being insubordinate. His sensory challenges affect his ability to process and he gets frustrated. This can look as though he is misbehaving or acting out on purpose. He has vision processing challenges reading for him on certain days takes more effort and strain. The weather has changed drastically and he is having problems with sinuses this affects his eyes and his ability to read.

He has auditory processing challenges so when he asks repeatedly what are you saying it is because the words are getting mixed up and confused in his head. He is not hearing them properly. At those times it is best to talk to him slowly or ask him if he understands what you mean. Sometimes it only takes changing a couple of words and he is able to process. With Ms. L they were working on communicating when he was having these challenges instead of assuming that he was being unwilling. The attention was on asking him questions as to why he was having challenges this helped Daniel find words and he was learning to express himself better. I think that may help in the future.

I am willing to give you as much information about him to help the sessions be successful as possible. Please let me know if there is anything I can provide to do that. I am always willing to work with the therapists and follow through. I just need to know what is expected/needed and how we can work together for the same goals.

I hope this gives some helpful information and please let me know what I can do help this transition on my end.

Thank you,


3 people like this post.

My Top 10 Posts for 2013 & Then Some …

As I have been trying to look back through the past year, I became overcome with emotion from 2012 into 2013. It was a rough time for me, we had a long stretch of rough times, but it all caught up with me by the beginning of 2013. I have a post that I am working on – trying to polish it up so it will not be so raw. I do not mind sharing when it comes to me, but I need to be a little more sensitive. I want to be sure I do not sound too harsh or something and that I am articulating what I mean to before I share with others. While pondering, I looked at my stats to see what my top 10 posts were for 2013 and overall since 2009. I found it interesting the most popular did not always get the most “likes.” However, I was also surprised at the amount of “likes” that some did receive, I had no idea.

I thought the numbers of visits on each one was interesting too because, I like numbers! 

I was intrigued to see how many ended on even or odd numbers and what they equaled when added together … it was a fun way to stim as I still recover from all of the socializing I did this week. Last night, my dad came for dinner and it was a pleasant evening. I was a little taken aback at how much Daniel attached to my dad. He was very sad when it was time for him to go and as my dad was standing at the door still talking getting ready to head out; Daniel sat there staring at him with the sweetest smile and sadness in his eyes simultaneously. In a way, I felt my heart break because I too have felt that same feeling. I bent over to comfort Daniel and tell him that he would see papaw again when he came back to town the next time. Daniel told me, “I love him so, so much.” Sigh … I am not sure what emotions I am feeling with all of that.

I digress! I shall get back to my point; here are the Top 10 Posts for 2013!

  1. Fear-Anxiety-Stress-Autism I
  2. “I Was Not Raised To Say Good Morning!”
  3. High School Trauma: Road to Recovery I
  4. Autism Cannot Be Blamed for Everything
  5. A Look At Criticism & Negative Self-Talk
  6. My Inevitable Meltdown
  7. I Did Not Expect That
  8. Double, Double Toil and Trouble
  9. Autism & Wandering: My Child & Me
  10. Gifted? What Is That All About?

And here are the Top 5 since 2009! 

  1. Daniel, Me & Empathy
  2. Bringing Awareness, I Am Turning Blue
  3. My Autistic Son Comforted Me Today
  4. I Tried…
  5. Are You Calling Me & Other Autistics Sociopaths? (Think About It)

Well, there is a lot to read.

I am a little shocked at how much I actually have written and how much we all have changed over the years. I hope some of these posts will be beneficial to others. If anything it helps me to see many things that I have worked through on a personal level. I did not edit any of these – my brain is too jumbled at the moment. :-) I would end here, but I wanted to share one of my favorite posts from June 2011 it was a monumental post for me because I started to reclaim parts of me that I had tucked away for years and years. It sparked my desires to write and share my poetry that was more creative and “real” so to speak. It triggered a new openness in my fictional writing and my desire to try to capture the imagination I would not allow out for so long. By allowing myself to paint it opened up more of my way of expression and creativity and reminded me how much the Number 8 & Infinity means to me.

3 people like this post.

Happy 2014! Hope Is In The Air?

I hope you all had a wonderful New Year’s celebration and are full of new hope for 2014. I am hopeful at the beginning of this year which, is a HUGE step forward compared to New Year’s Day 2013. I do plan on reflecting over last year, but I have not had a moment to sit down and reflect. Our lives have been a whirlwind of change for months. We have all managed rather well thus far … However; I did almost have a complete meltdown yesterday! Good news, I was able to calm down and work through my anxieties. It was a rough a day though; things would go right then, terribly wrong, and then right only to trickle back to wrong. Daniel was on the verge of his own meltdown, but found his happiness in taking a looooooong bath.

We had plans to go over to my aunt’s for the evening to celebrate and spend time with family.

This was the first year that we were able to stay for four and half hours and all of us had a great time. Daniel did remarkable! He had one moment around the end where he almost lost it – it took me a minute to figure it out. I thought he got hurt because he collapsed into David’s lap. I realized that the noise of everyone laughing had hurt him. I quickly scooped him up ran up the stairs to the quiet room where Ariel and Joshua were playing the Wii. He was able to tell me that the noise scared him and hurt his body. I gave him the choice of leaving to go home or stay for a little while longer until we were finished with the “Dirty Santa” game.

Side note: It took me a while to figure out that game I do not normally participate.

However, David I are really trying to actively involve ourselves with family more and part of that involves doing things that we would not ordinarily do – the positive, it was a pleasant experience and everyone was very kind. :-) OK, back to topic. Daniel made the choice to stay and though he was tired and reaching the point of “too much” he communicated that without reaching a level of meltdown. Today we all slept in which, is a big deal for Daniel and I because no matter what time we go to bed both of us normally get out of bed at the same time everyday otherwise the day is ruined! 😉 He has been very happy today, needs a lot of deep pressure and answers, but happy nonetheless. That is just so wonderful.

Now I shall spin back around again and get to the main topic for yesterday – anxiety.

Bare with me, I am a bit frazzled from serious anxiety yesterday and I am wading through a social hangover. I was nonstop from the moment woke up (around 5 am) yesterday until late that afternoon when my body collapsed on me from fatigue. As I was making food and preparing for the evening events Joshua said out of nowhere, “I am nervous.” I stopped what I was doing and asked, “What are you nervous about? Oh, is it about going tonight?” He said, “Yes, I am nervous about going tonight. I am worried, but I am excited at the same time.” I said, “Oh, me too. We are having anxiety. I always have anxiety about going to see family.” Joshua said, “Me too, I never know what is going to happen, but I know that I have fun. I get nervous about a lot of things like that.”

At this point, I was excited to hear Joshua’s thoughts he has not been able to communicate these feelings so clearly before. 

Before his anxiety would manifest in uncontrollable fixations with certain toys, arguments with Ariel, or him becoming extremely sensory sensitive more so than his normal sensory sensitivities — he is already quite sensitive. It made him feel much better talking about and discovering that I too have these same feelings. Since we were able to talk about it I learned some helpful information to ease his anxieties in the future. However, there is more to this story. As Joshua and I were talking Ariel shared about some of her anxieties about when she tries something new or meets new people, but what she said about family really made me think. She said, “I get anxious about going to new places or meeting new people, but I am not anxious about going to see family.”

I said, “Really? You do not get anxious about going to see family?”

She said, “No, they are family. I know they are my family so why should I be anxious or nervous about seeing them?” I stopped in my tracks and looked right at her then I said without thinking, “WOW! I wish I could be like you.” She laughed and said, “You can.” Ha ha ha There were several things I realized in that moment. I realized that Joshua has anxieties that I was unaware of despite being able to discern he was anxious I was not certain as to what he was anxious about in the past. Now he can articulate it a little more and that helps me to know how to comfort him. Ariel tends to be more like my mom when it comes to relationships and she is not affected by family dynamics in the way that I am. This conversation made me grateful that Ariel does not suffer from the social family confusion that I do.

It seems that Joshua does not either his anxieties were based on uncertainty of how, when, what types of things were going to take place.

My anxieties can be traced back to personal relationships and social confusion. Ariel has expressed her social anxieties to me and they mainly have to do with not knowing how to start or end conversations, how to make friends, what to talk about, and things like that. Joshua has similar ones too. I thought about what Ariel said for the rest of the afternoon. She really had me thinking. Why should I be anxious about seeing my family? I thought about what Joshua said and I could relate so much. I was anxious and excited – his was uncertainty of events not how people were going to treat him. Mine was based on fear of not knowing if I was going to be hurt by people’s words or actions. I have a history of being hurt by certain people in my family, whether it is from purposeful acts or out of my social confusion it does not matter my brain gets overwhelmed and fight or flight rages through my skull.

Yesterday was a little different.

After fatigue forced me to collapse on the couch the only thing that was full of energy was my mind. In my rampaging thoughts it occurred to me that my anxieties this time, was not about anyone in my family I was anxious about me! I was concerned with what would come out of my mouth because I was so exhausted and overwhelmed that I had no filters. When I get like that it is as if my mouth has a mind of its own and rambles on about any and everything. My mind does not catch up until a day or even months later and terror soars through my veins as I think OMG! What did I say? What did they think I meant by that? Why did I say that? Oh, goodness! I didn’t mean it like that at all! Did they think this? I go over every possible interpretation then, I loop in panics about each conversation I had. I was also, anxious because of what I was wearing.

I tend to steer clear of a lot of prints – my closet is full of solid shirts all similar in style.

I have similar pants, jeans, shoes – the “wide” ranges of color in my closet are black, brown, white, dark blue, gray, and white. There are hints of reds, burgundy and hunter green, but mostly black. I purchased a dress on clearance that was a leopard print. I loved it because of the style, feel, and the twirliness of it. (I do like animal prints, but I rarely wear them on my shirts or dresses.) I had wished it was black, but alas there was only the leopard print. I bought it anyway and chose to wear it yesterday. I almost did not wear it because of my fear of being made fun of and I had a slight moment of panic when David responded a certain way that I did not understand. The last time that happened I ripped off the sweater I was wearing and spent the next 20 minutes trying to find something to wear almost in tears.

Needless to say, I will NEVER wear the sweater that he made a comment about no matter how many times he tries to explain it to me.

I cannot now I have a negative association and will have to give it away. Since, I understood what I was actually anxious about I was able to share this with David. It helped him to understand and have some compassion for why I was acting the way I was all day. I cannot say that it made me all calm and peaceful, it did not. I went to my aunt’s house feeling grumpy, but angry with myself because I did not want to be grumpy. I was so out of it my sister told me that I looked good and I thanked her, but then she said, “You look fantastic by the way” and I looked at her with an icky face and asked, “Why do you say that?” I have no idea why it even came out of my mouth. She was referring to how much my body has transformed in the last few months from working out. I apologized and told her that was not what I meant. I explained my day and I was frank with everyone telling them that I had no filters!

They were going to have to forgive me upfront because I had no control. Ha ha ha 

It worked out well. My aunt was having her own set of anxieties and feeling overwhelmed we shared in goofiness. At some point, my sister got me laughing so hard that I got the giggles and continued to get them all night long over the silliest of things. That is fine with me – laughing at silly things is much better than, being grumpy and feeling foreboding fear of some phantom thing. I do not do resolutions; I make conscious decisions to transform myself when I feel that I am ready to do so. I made a lot of transformations in my thinking and life last year; I plan on continuing to do that in 2014. I have a lot of hope for this new year. Part of yesterday was the beginning of me transforming my mind about family and how I can communicate to them so they know why I may be acting a particular way or why I say certain things. It helped that I had another positive experience with them to help my mind the more of those better.

Possibly one day I will feel more like Ariel feels about seeing family. :-)  

4 people like this post.

Cultivating My Own Support Network

There are people who have had great support from loved ones and friends throughout their life. There are those who have managed to find support to help them, such as finding groups, forums, meetings, organizations, and/or through their religion. I have not had that — my life has been rather lonesome and self-reliant. Though I do not want to say I have not received any support from friends or family, I have. However, it has come at a cost — many times I found that my needs were not actually met. I ended up stuffing my needs out of guilt, shame, or obligation. I had to be ok. I had to get over whatever I was struggling with because others needed more support. Or what I was going through was not “as bad” as what someone else was going through.

It felt as if I was either ignored or that I was on some sort of check list for them, and once they felt I was ok, they could move onto their next thing.

It feels very invalidating and because of this, I’ve grown accustomed to doing things on my own. I had to learn as a child to take care of myself and others. My emotional needs were not a priority to the adults in my life. My basic physical needs were met, but many times accompanied with guilt for needing anything in the first place, unless it was the holidays/birthdays. During those times, I was showered with gifts, but there were also times when I hated getting gifts because I knew that they would only be used against me at some point, if I did something wrong or if I asked for something during the year. I am not sure why I expected more support from my family when we discovered that Daniel was Autistic. I am not really sure what I expected at all, other than wanting to talk to them about it, for them to want to learn about it, and try to understand it along with me.

I did expect for people to listen to me, allow me speak about my concerns, and share in my enthusiasm at discovering answers.

I didn’t get that, mostly I received silence and condemnation from my spiritual community. I felt ignored and isolated. I felt as though Daniel was nonexistent to people. I felt alone and questioned myself on many occasions. What if I haven’t prayed hard enough? What if I wasn’t doing enough good in the world? What if I was causing my son to be Autistic? (Technically, I guess you can say that I caused my son to be Autistic since I am too. ;-)) Why did my family refuse to talk about it? Why did people think it was evil? After years of feeling such tremendous fear and pain, I noticed a pattern: everyone in my life was being consistent — except me. The reality of my life is that I have been my strongest and most consistent emotional supporter. Many of the things that I have accomplished have been done on my own. This does not mean that people have not been there and provided the means, resources, or encouragement, but the main source of support that I have longed for has been emotional support.

That means a person’s time, listening with nonjudgmental ears, an open heart and mind, people who make it clear that what I am feeling and who I am matter.

That comes from relationship and connection – that type of support I have had to provide on my own. It took me understanding that in order to move forward in seeking out how I define and need support. I had to accept and understand myself before I could look to others. I had been doing it my whole life, but I never trusted it. I had this lurking feeling that somehow I was wrong for being able to support myself. I watched as people would have people in their life rally around them and no matter how hard I tried I could not keep friends or have that same connection with my family. I did not know what support looked like for me, but I knew I had not had the same kind of support as I witnessed in social settings. Even if I did receive any sort of emotional support it was invalidated by my confusion of actions/words not being consistent, abusive relationships, and/or constant anxiety and depression.

Many times the things that people did as acts of support I found hurtful.

I am different from many people when seeking emotional support. (or maybe I am not?) I do not want physical hugs, I do not want to be touched, I do not want to hear “I love you”, I do not want to be surrounded by people when I am seeking emotional support. It helps having distance with people for me, but I desire to know that they are there. My goodness what do I want?? How is anyone supposed to know? That is what I am still working on, but I can say that it is important to me to feel validated and heard. I also, grew up living to support other people. I grew up trying to make everyone else happy. If I made sure they were happy then, life was calm. If they were not then, life was chaos. In doing this, I learned that my emotions were less. Throughout my life when I had tried to express my feelings, share the emotions that I was feeling seeking that emotional support I felt invalidated and even felt shame or guilt for feeling them.

I learned over time to stop sharing all together.

I learned to stop trying to ask people for support. My ways were not their ways and I was expected to feel grateful and satisfied with the way they gave me support. When I attempted to share with David I was encountered with similar responses until I finally gave up, as I had done with every person in my life. Again, I found myself relying on me for my emotional support. When I felt too overwhelmed I found myself stuffing my emotional needs. I have done that my whole life too. I have the ability to live long periods of time ignoring my emotions or dismissing them devoting my energy to everyone else around me. However, this is very damaging and the emotions eventually come blasting out through meltdowns or I internally implode into shutdowns. This is another reason why I started a blog; I was desperately seeking support – any support.

I wanted someone to be there and let me know that I was not alone in my feelings. 

Over several months David and I have learned to work on our emotional responses. We understand that they are ok, as long as we are not manipulating or trying to cause harm to the other person. Understanding emotional responses has helped me in my expectations with others. I have more awareness of trying to understand them, I am listening and observing with new insights because I now understand that people react for the most part because of their experiences. In observing people’s emotional responses, I have been able to discern what types of people are good for me to try to establish relationships and those who cannot be in my support network. Before I had allowed everyone in then, I eliminated everyone from my circle; now I am able to see a bit clearer and know that there are some toxic people out there for me. There are people who I connect with and are good for me as well. At some point, I had accepted that I was wrong if I did not fit into the “autism mom” groups. 

I felt wrong if I did not fit in with my fellow Autistics. 

I felt wrong for not fitting into my family. I felt wrong for not having friends. All of that was a motivator that caused me to force myself to try to fit in only to feel even more isolated in midst of people. I am not going to lie, it hurts. Even as I type these words out my heart hurts and tears kind of fill my eyes. However, I need to go through this because it helps me to understand that I cannot just pick anyone to be my emotional support. I cannot have people who do not build into me emotionally and/or siphon me for emotional support — they have no desire to have my kind of support. I have had people come along and help me, love me, hold me up, but not for long and like I said earlier, it usually came with a price. I am thankful for those people, but I had to do the work. I was not able to share with them honestly without consequence.

I sat in silence much of time because:

  1. I did not know what I needed.
  2. I did not know what support actually meant.
  3. I was so used to doing things on my own that I did not think about it.
  4. Past experienced proved time and time again that people only gave me the support they wanted or assumed I needed.
  5. Past experience gave me the perception that if I needed support that I was weak.

There are more reasons, but I think you get the point.

After struggling with feeling so alone with trying to find help for Daniel and trying to understand autism, I gave up on people in my “real” life. I looked to the internet to find others like me. I sought people who understood and appreciated my challenges, pains, and talents. I have slowly built into myself, but much of that came from the positive experiences and acceptance that I have received online. Through my virtual life I have been able to gain a more positive perspective about myself through the life experiences that others have shared and some of the friends that I have made online and continue to make. I know that I can go online and find people who have gone/are going through what I have or similar experiences and that helps me feel connected.

I can only take so many social encounters.

However, by cultivating an online network of people, I feel supported, understood (most of the time), and vulnerable, but the relief that comes from knowing others understand what I am sharing is worthwhile. Even when people do not understand but simply “like” or give a virtual hug or something, it helps. I try to do the same for others and support them as much as I can. I think even if someone does have a strong support network with family and/or friends, they can still have moments of feeling alone and misunderstood. Reading and sharing with our community has been a large part of where I find support.

I am using support in the context of,

1. to give aid or courage to
2. to give approval to (a cause, principle, etc.); subscribe to to support a political candidature
3. to endure with forbearance I will no longer support bad behaviour
4. to give strength to; maintain to support a business

I am thankful for the passion that ripples through and the tenaciousness of the Autism community.

It keeps me motivated to stretch my mind and change for the better. It helps me realize that all of us need support differently. During our Autism journey, we have needed a lot of support financially, physically, and emotionally. People have come and gone who have helped us with each of these. However, I found that I am capable of providing a lot of that support for myself. But I definitely need people in my life and I do need encouragement, reassurance, validation — I still need support. I started to create a support network that fit for me. When things seem to be going downhill and crumbling around me, I have found that being able to go online and to see this network flowing it gives me hope. I do not always communicate directly with people, sometimes reading their words is enough to give me a boost. Then, there are other times when I feel left out and disconnected.

That disconnect has enabled me to see how I can support myself and communicate how I need support from others.

I am still learning, but I am getting better. It is interesting that through this past year when I stopped seeking support or understanding from family that they have slowly started to talk to me about autism. I still do not expect anything, but I am happy that they are not being silent. I no longer feel that Daniel is being ignored. I feel validated at times when they ask me questions and no longer dismiss me or change the subject. I understand that I cannot seek support in the ways that others do. I will not seek out groups anymore — it is not for me. I will not discuss on forums — people can misunderstand so easily. I will not try to be friends with every ASD mom — some may be a good fit and others may not. I will continue to seek support in the ways that suit me. There is nothing wrong with how I need support.

I see with more clarity how to ask for the support I need from the people in my life.

I do not look to others to provide my emotional needs that does not mean that I do not need it. It means that I am better at seeing what emotional needs I have, how I can help myself, and when I need to ask others for their support. I accept what they are capable of giving and that is enough for me. I accept that people need time to process. I think that some of the people who seemed so unsupportive in the beginning were in shock, denial, or were confused and misinformed about autism which, made it difficult for them to know how to respond or support me. I do have hurt and feelings of abandonment, but I am healing and I can understand.

I actually think that overall learning how much I can do on my own has been a real eye-opener.

It has built into my self-esteem and gives me the confidence to keep stepping out trying to achieve things I never considered before. I do not deny that I feel incredibly lonely at times, or that my mind wanders in sad thoughts about not having friends and family like other people do, but maybe it is all about timing. Possibly, I needed to accept myself and learn more about relationships before I could establish real life relationships? We’ll see. Each person has to define their needs and how to actively gain the support they need — some of us need help in learning how to do that. :-)

Related reads: 

4 people like this post.