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.