Mind Retrofit

Archive for November, 2009

I have been reflecting on the past few years, especially this last year and I am just amazed at how much things have changed. Many things have changed for the better. I have changed, the children have changed and David has changed also. We have all grown in some way and have progressed in areas that never seemed possible. Getting ready for our Thanksgiving day has been good because it has forced me to actually take a look at the past and the present and think about how thankful I am.

One of my top things I am thankful for is Daniel getting off the bottle.

I know that may seem silly to some but it has been a real challenge for us and has taken a great deal of patience that I don’t have and could only come from the grace of God. To understand the fullness of the situation is rather impossible but I am sure other parents have their nemesis as well. Daniel was unable to function in public without it in his mouth, he wasn’t able to play with Ariel and Joshua unless he had the bottle in his mouth, he had to sleep with it. It was virtually glued to his mouth, he only drank water and one carnation a day but I had to watch his teeth.

It was so frustrating going out in public and having people stare at him like he was a freak.

The good thing is Daniel didn’t care and that helped me not to care either but for his development and health of his teeth I had to get him off that thing. Now that he is five, it was really time, but it helped most that Daniel felt it was time so it has work out well. I am so thankful for what has happened since the bottle left. He is really talking, I posted last month that he has just started talking in complex sentences, now he is actually having a conversation with me. He has been talking to me, not just telling me what he wants, he is telling me why he wants it, what he likes, when Ariel or Joshua take a toy away from him. Even now he and Joshua are arguing over a toy, both of them saying “I having it” “no, I having it”. It is amazing.

When going through some of these things it feels like it will never be different.

I can relate that to money, we had a very rough year and it seemed very bleak at times, but David has always managed to find a job in the midnight hour, now he has several and we are incredibly blessed being in the free lance work. I thought I would never be able to handle social situations, even though I still have my freak outs and my fears it no longer stops me. I am able to move forward and realize that I am not crazy, my brain works this way and I just need to find out the best ways to help me. Still not having insurance has been a big issue with us, it is frustrating to make too much money to get help but not enough money to afford a plan for our family.

However, we are all very healthy and do our best to stay that way.

Ariel and Joshua are just wonderful, they care so much about Daniel and wanting to help him. They adore him and do whatever they can to help him. They are quick to forgive when he is having a hard day and they are quick to accept any of his differences. I am the oldest of my sisters, I am the only one from my father and mother, and lived with only two of them. I am 10-20 years older then each of them and I never had a true sibling relationship. To see my children love, fight, accept, mentor, and just enjoy each other is a great mystery to me and I am thankful to witness it.

There are so many things I am thankful for it would take too much writing to share it all.

On pondering all of this, I would have to say that I am very thankful for gaining knowledge about the autism spectrum, finding out about Asperger’s. This one thing has caused many other things to fall into place that has made our lives make more sense, has brought healing and clarity, and has led us down a path of joy. I am thankful that I can finally write about it, I can articulate it, I have people who understand what I am talking about, I am not alone. I am especially thankful for this year, it has been the milestone that has turned the course of our lives. We could not have done this alone, through the love, prompting, and direction of God this is possible. We are very thankful to Him.

He didn’t do this stuff magically or through great miraculous signs, He did it through people in many different ways and helped us understand our children and ourselves much better.

Now that I have had my couple weeks of full blown anxiety, I am going full circle into feeling like I don’t want to talk to anyone, I don’t want to see anyone, I don’t want to email anyone. I want to stay in my house isolated from everyone. I am alright with David, the kids, and my mom but everyone else, the thought is just numbing. I have done this my whole life and now I see the pattern but I still don’t know how to deal with it.

I force myself to go out and be around people.

However, inside I am just numb. I start having thoughts like “that person doesn’t really want to be my friend, they are only doing it because they have to”.  Or with my family members, who do have contact with me “they are only doing it because we are related”. Another thought that goes through my head is about the family members who I do not have a lot of contact with, “they don’t care about me they never have”. So when they do contact me for some reason the thoughts I have are “why are they contacting me, what do they want?” “They must be up to something, they want to mess with me.”

It is a fine line between paranoia and anxiety.

Deep in my mind I do not believe these thoughts and I do really care about these people. I love my friends and family, but situations in the past pop up that give reasonable evidence for me to think these things. I wish I could just be friends with people and not feel that they HAVE to talk to me or that for some reason they HAVE to be my friend. I wish I didn’t want to cut people off, but I do believe I have valid reasons for doing so. I have been hurt and made a fool of quite often in my life by people who have claimed to love me or be my friends and this does not exclude family.

There are certain family members who have caused me a great deal of pain and I am just unable to trust their words or actions.

I know in the past I have lost friends because of me not trusting them or not believing that they really wanted to be my friend. I know I do this to protect myself but I don’t know how to stop it. There have been times when I have cut family members off too. I do not feel bad about it, even though there is something telling me I should. I just get numb and the only way to describe it is there is like a retractable wall  in my brain. It goes down after I am in the middle of my anxiety cycle, all of the sudden any feelings or emotions I had are gone and I feel nothing. Then after about a week of this it goes back up and I have my feelings and emotions back. At the beginning of this cycle, my emotions and feeling are heightened. I am super sensitive to people’s actions and words.

Am I the only one who does this?

I feel so alone when it comes to this, David and my mom have this ability, where when they are done with people, they are done. They seem to be able to say whether a person is good or bad for them and if they feel they are bad for them they cut them off and are fine with it. I can’t do that, even though I may go through a cycle of being numb toward them, I still feel guilt about it and then when I come back around it’s like I try to compensate for my actions and they have no idea I even felt this way. I go over and over the situations of the past weeks, scanning my words, actions, behaviour, everything and I have to talk my way out of the wrong thinking.

Does anyone else know what I am talking about?

I have attempted to write about anxiety for the past week. So far I have three other posts waiting to be published. I could write about this topic forever. My anxiety has been my closest “friend” since I can remember. I have struggled with it my whole life and it has no boundaries. It hits me whenever or wherever. It doesn’t just happen in unexpected situations it is a constant part of my being. I still have anxiety with family functions. Every Sunday when we go to church I still have a knot in my stomach. When I have to go to the store I still have this moment where I have to talk to myself and get myself pumped up to go. I have gotten to the point where I have eliminated virtually any reason to use a phone.

I prefer the form of communication to be via email.

I wish I could have had that growing up. I remember holidays and I did enjoy spending time with family but I also had those moments where I just wanted to escape. My mom’s side of the family is small and we didn’t do much family activities. They were not huggers, they were not loud, it was pretty much come over, eat, sit and watch tv. I would go play by myself in another room and I was fine with that. My dad’s side of the family is huge. The house would be crowded, loud, laughing, music, fighting, jokes that I didn’t understand, kids every where and hugging. All the hugging. There was a part of me that loved it and a part of me that hated it.  But when given the choice I always chose to go to dad’s family.

They were more entertaining and my aunts were only 5 and 6 yrs older than me, so I had people to hang out with.

I still have anxiety about family events. Since we have moved a long distance away I haven’t really been apart of the family events for a several years. It is good and bad, I miss my family but to be honest the dynamics just makes me extremely stressed out just thinking about it. The last family function I attended was my sisters wedding. I went into a full blown panic we had to drive two hours to get there, in the parking lot I was hyperventilating and couldn’t calm down. My aunt and David thankfully helped calm me down and no one knew.

There are a lot of reasons for my panic but it will make this post too long if I go into them.

Now I have even more venues for my social anxiety like online social networks. I really shouldn’t have anything to do with them but I feel I must to stay connected with my family and my few friends. However, I have a whole new set of anxiety to go along with it. I find myself being obsessed about what to post and when I do post I find myself obsessing about what others will think. Or if someone comments on my post that others will think that I think the same way that person does when I may not. I get hit with other things too like being offended.

My sisters never wished my children happy birthday and it was right there for them to see.

I remember their birthday’s and their children’s birthday’s but they couldn’t even wish my kids happy birthday? Then I start to think what have I done to upset them. Why don’t they care about me or my family? The questions go on and on, they flood my mind and then I get to the point of who cares. They don’t care about me, we are half sisters anyway why would they care about me. Then I come full circle and say well I will just let it go it isn’t that big of a deal anyway. Then  there are all of the posts or comments that I don’t understand.

I think they are jokes but then I am not sure, I have to ask David.

I know when my anxiety is taking over, I understand the causes, I comprehend that a lot of it is made up but I can’t stop it. It takes hold of my mind and I am sitting there dueling with my brain. Using my reason and explaining to myself that, for instance, there is no reason for you to be worried about calling your dad on the phone, or there is no reason for you to start to hyperventilate because you are walking into the grocery store, it’s going to be ok when we go to a church event. However, I feel my mind racing, the sweat forming, my heart pounding, the invisible hands around my throat that is taking away my breath, and me talking a mile a minute.

I don’t know what it’s like not to have this be a part of me.

There are maybe a handful of people close to me who know this about me and they are the ones who help me. They talk me through it, they tell me I am not crazy, they help me get to the point where I am calm again and able to do what I need to do. The funny thing is I have been able to hide this so well that I have been able to work in places as anexecutive in a retail chain, a staffing executive, leadership rolls in church, I have done numerous volunteer outings, I have gone out socially and have led a seemingly normal life. People have no idea on the inside I am full of fear and on the verge of panic. I am able to hold it all in until I get home or in a safe place and then I have my moments of needing to stem, if I don’t I cry, I get angry, I am irritable, I go up and down then come out of it.

I have learned my limits and now I keep to those limits as much as possible.

I am not willing to have myself or my family suffer for the sake of socializing. I will do what I can and when I know that I am going to have a lot of social interaction I prepare myself as much as possible. I do enjoy being with people I just don’t enjoy trying to read them, trying to understand them, trying to fit in with them. I do think I need to stay off of the social networking for a while though it has caused me a lot of anxiety.

Daniel has refused to let go of the bottle and I have tried everything. I have purchased every cup I could find. I went through all of the websites and purchased the cups to help him wean off the bottle. I have been working on this solidly for about 2 years. I didn’t think it would ever happen. I have had visions of Daniel being 18 yrs old walking around with a bottle in his mouth. I despise the thing. The last time I tried to take it from him it was not a pretty sight. Needless to say we both had meltdowns and he got the bottle back.

The battle of will does not work.

For some reason I felt prompted to take the bottle away two days ago. Several months ago I found a Honey Bear cup with a straw and I decided this was going to work. This cup was going to be “the one”. Well it came and he would have nothing to do with it. However, I tried this time because I thought if he could figure out that he had control over the water coming out he would think it was super cool.  It worked! He has been drinking from a honey bear cup, he is not sucking but squeezing the bear and getting water.  That’s ok, small steps!

He hasn’t had a bottle in two days and we are both alive!

Since I took the bottle away he has started talking more. He has been asking me questions, like today he asked “Hey mom, why you make a coffee?” He started asking why on Monday and has been asking me more specific “why” questions the last two days. Another big thing is that he is eating different foods. Food is a huge challenge for us. He normally has a diet of yogurt, bananas, gluten-free pretzels, cereal, sometimes strawberries, and natural cheddar cheese Cheetos. I manage to sneak fish oil, vitamins and pureed veggies in all of his stuff. Usually in his soy milk and yogurt.

Today he ate bananas mixed with cream of rice.

He also ate noodles with cannelloni bean, pumpkin puree with a little garlic salt and olive oil, he grabbed cashews and a bowl took a handful put them in the bowl and ate them, asked for sunflower seeds didn’t eat them but asked for them they are in a bowl waiting. He is trying to find his oral stimulation I think. He never eats this much or this kind of variety so I am pretty happy about this.

However it is only day two and I don’t know how things will go.

He asked me for a bottle  earlier and it popped in my head the story of the five little monkeys jumping on the bed. So I told Daniel “Mommy called the doctor and the doctor said no more bottles for Daniel”. I have been showing him a baby doll with a bottle and pictures of babies with bottles and boys his age who have cups, I started doing this several days before I took the bottle. I explained to him I was going to have to take the bottle away because he is a big boy now. He just had his 5th birthday so I told him big boys his age drink cups.

My catch phrase for him has been “Daniel is a big boy he drinks cups, bottles are for babies”.

He is repeating this over and over to himself when he wants a bottle and he says “no, I drink a cup”. He found a pacifier, which none of the kids ever used but they played with them,(how do they find these things) he showed it to me and said “this is for babies”. I told him he could put it in his mouth if he wanted to, I was just trying to get him to put something in his mouth to help with the feeling of something new, he said “no it’s for babies”. Now he is carrying it around and using it as a visual to remind himself that bottles are for babies. Pretty amazing he thought of it on his own and is helping himself remember the rules.

I never thought this day would come the bottle has been my nemesis for a long time.

I have tried in the past to get rid of it but he just was not ready and it was an ugly situation every time. He just hasn’t had the verbal communication to be able to tell me and he didn’t understand why I was being so horrible taking his it away from him. Now that I have been able to explain to him that it’s not good for his teeth, he is too old, he needs to learn how to use cups so he can learn to pee on the potty and whatever else I have come up with that have been valid reasons in his mind, he is not so resistant. I hope this continues I guess the real test will be Sat. when we go to a social event and we see how he responds.

Hopefully it will be great for him, for all of us.

This whole year has been a year of firsts and I am very excited about them all. I wanted to catalog our list of firsts so I can look back and remember what a tremendous year this was. For the “normal” family a lot of this stuff would seem to be regular activities, for us they are huge milestones.

As I look each one I am reminded not to take anything for granted.

I am actually quite happy that our experiences are so unique because it keeps us in the mind set of always being thankful. I am so thankful that we are able to do these things now, maybe not as often as other families but it makes it mean so much more to us that we are able to enjoy ourselves now. It also makes us have so much freedom in knowing that if we don’t do the same things as other families it is ok, because we are completely different. We will do normal family activities on our time so we truly can enjoy them and not take them for granted. We are not normal maybe to some but we are perfectly normal to us.

Here is what I have so far.

I started taking all three kids to the park by myself.

I went to the beach with all three kids by myself.

I went to the library with all three kids by myself.

I went grocery shopping with all three kids by myself.

I took all three kids to free art classes all by myself.

They carved a pumpkin with Grammy.

We went to Grammy’s house instead of her coming to our house.

We went to the movies as a family.

We went to the museum as a family.

We went to the store  as a family and no one sat in the cart.

We went out for ice cream as a family.

We went to a coffee shop as a family.

We went to garage sales.

(these were the end of 2008 so I will go ahead and put them in)

The kids were in a Christmas program.

We all were in a Christmas parade and rode in a trailer with hay.

Like I said, all of these seem like normal family activities but for us they are not.

It has taken almost 5 years to get to this point and it is awesome. It is so awesome to see Daniel enjoy himself. It is incredible that I have been able to progress too, now I am able to handle stressful situations a lot better. These things mean so much to us. I am so happy to be able to have Ariel and Joshua enjoy themselves also. Those poor guys have had to miss out on some things because of me and Daniel. I was just unable to do it by myself. I actually got fed up with me this year and said “I don’t care I am going to try it”.

So I did, I swallowed my anxiety and fear and I took my babies to the park.

That was the first thing, after that went well I took them to the beach. I just kept pushing myself and going for it. On the days that it didn’t go well I didn’t freak out, I just stayed calm and dealt with whatever was going on. I stopped caring or paying attention to what other people did or said. If Daniel was overloaded and he was unable to control himself, I didn’t even look at people. I could feel their eyes on me but I said to myself “who cares, they have no idea what is going on, I need to help my child”.

That was a first too, me not caring what others thought about Daniel or myself. (well myself in this situation)