Monthly Archives: August 2011

Change

I finally got Adrian to bed. Jade is not so easy lately. They know school is coming quickly and seem to be wanting to savor every last moment of summer. Today was a crazy day in which we replaced a badly dying refrigerator. Adrian HATES change!!! Most of my day was spent listening to him repeating that we did not need a new Silver refrigerator, but needed to keep our old White refrigerator. He even went so far as to put himself in the refrigerators space and pretend to be the old one.

His uncle came over to help his dad move the old refrigerator and when his uncle went to pick him up I saw his body stiffen. Another change he was not expecting I am sure. Most people know not to touch him unless he initiates it. That does not stop a few family members from still trying to hold him or pick him up. You can see the physical changes in his body. Though he did not react the way he normally would today. He did not scream at his uncle. I tried to explain to him why Adrian does not like to be touched and he said it’s okay he likes me. I said it is not about him not liking you. He simply does not like to be touched. He said nothing and told Adrian he would see him again soon to which Adrian replied see you again soon. This uncle is one he does not see often maybe four times a year. He does like him though so that is good 🙂 I just wish more people would get it.

Back to the refrigerator… The delivery men arrived and Adrian tried to run out to them and say hello! Something he did not do before teachers started insisting that he greet people. Now he thinks it is okay to greet everyone. We had our discussion about why we do NOT talk to strangers and he looked for the new refrigerator. The delivery men had to take off our front door to get the refrigerator in and Adrian cried for the front door. He was wailing put the door back on. When the task was complete and the delivery men were gone I asked Adrian if he wanted to help me put our items into the new refrigerator. He of course was hesitant. He tried to put his Silk in the refrigerator and got mad because it is set up differently then our old one so he could not put it in the same spot. He often becomes agitated with tasks like this. If they went one place and no can not he gets angry. He helped for a little while and then lost interest.I am sure I will hear more about needing our White refrigerator back tomorrow.

The events of today have me thinking towards the school year about to begin. Adrian will be in a new school with two new teachers and new classmates. How does a child who can not handle the replacement of a refrigerator cope with that level of change? I expect many difficulties. This weekend I will be working on writing social stories for Adrian to take with him to school. Hopefully these stories will help get him ready for his changes. His school is having an open house on August 31. I plan to take plenty of photos to use in his stories. His last school had him do several trips to his new school last year to help prepare him. I am hoping that helps too.

Nightmares and Mood Swings

I went through this when Adrian was two and three. An obsession for fecal matter. He would smear it on walls and toys and we would clean it diligently. This has not happened since that time until today.

Adrian was yelling and screaming and I rushed to the bathroom thinking he pooped on the toilet and wanted to show me as he often does. He has been pee trained for years but the poop training did not start until about three months ago. As always with some new skills he goes through periods of regression. The scene in the bathroom he and his sister share was too much for me to handle. I found feces stomped in and urine on the floor. I could clearly make out his footprints. Thank God he did not put his hands in it. He was yelling “mom I need a shower” The old me would have spanked him till he was red. Before diagnosis before knowing anything about the impulsiveness  of Autism, before I really knew my son and what makes him him. My guess is he was trying to clean it up and thought his feet would do the job. at any rate I did yell. Then I got on my hands and knees and started cleaning. Adrian was already in the shower washing himself. I asked my husband for help. He was fast asleep on our Chaise and I can’t say I really blame him because he worked most of the night and part of Saturday morning.

I thought Adrian at his age, seven, would not be doing that anymore. As I have always told anyone who asks he has cycling moods. One month he could be obsessed with something Thomas and Friends for example and want to buy every character he sees. The next month it could be Wall-e or Dora that he is obsessed with. Most do not seem to get this concept. He has been like this for as long as I can remember though. Since he first started to get interested in anything. We still go through periods where he asking for every Thomas thing he sees or watching every Thomas episode he finds and then all of a sudden he does not want anything to do with Thomas and then three to six months later he is right back to his obsession. Bi Polar Disorder runs heavily in my family. Both of my parents are Bi Polar 1 or 2 and I think my brother is also. I often wonder if maybe I also am. I have never been diagnosed with any disability at all. My mother says she has had my brother and the three of us girls tested for everything. I am afraid Adrian already seems to be showing signs of Bi Polar. When we had him evaluated the psychologist diagnosed him with mood disorder. I am hoping today’s episode is not his latest recurring obsession.

To put it in terms he would understand I explained to him that Monkeys behave in the way that he did today. That they throw their fecal matter and smear it. That well mommy was angry at what he did I was not angry at him and that I was also not raising a Monkey. That I did not appreciate what he did and that he was never to do so again or he would face more serious consequences than 45 minutes of no privileges. He is so big on privileges such as the ipod, television, Wii and  computer. He will do anything not to lose privileges. I told him we expect him to behave appropriately and that what he did was not appropriate. I never leave anything alone. Every mistake a learning opportunity. For him and myself as well. I have to be tough and determine what is fair. The last thing I want is him thinking he can get away with whatever he does and walk all over me. That will never work because it does not teach respect for one’s self or others or personal property. The highlight of the day was when his sister suggested they get online and look up Monkeys and I said why Jade? We don’t need for him to learn how to fling feces like a Monkey too. To which Adrian replied No Touching Feces or Poop.

We, none of us, chose for Autism to happen but now we must deal with the good and bad of it. I just pray there is more good than bad and Thank God for us there usually is.

Autism and ADHD

I was reading an article today which I will post here that concludes a study done on patients with ADHD and Autism who have copy variants. This means a duplication or deletion of chromosomes. The study went on to say that some of these copy variants can be linked to patients with ADHD and Autism and that 75 percent of children with Autism also have ADHD.

Adrian falls within this 75 percent. His sister and my only other living child has half of this scenario the ADHD half. While I am unsure whether she carries the duplications her brother inherited from me. I am pretty sure she does. I have to take her to have the test done.

Both children also have an Auditory Processing Disorder. More sign of my bad genes at work. I have one of my three siblings who have also had genetic testing done and it turns out she has a completely different genetic condition than I do yet at least two of her five children also have ADHD. How odd is that?

She keeps telling me the genetic lab wants to study our family because two different copy variants in full blooded siblings is extremely rare. I am supposed to be going back to the lab in December so they can track Adrian. One of the duplications I passed on to him is known to cause Autism.

I knew it was genetic because he has been they way he is since birth. Jade has too but her impressive earliness to meet milestones and rapid language development hid that fact from me. She has always been a brilliant child when it comes to those things. Last year we had to hire a private tutor to work with her because she was behind in math. She also started soccer which she loved.

The Auditory Processing Disorder distorts the way my children hear and learn. You can not find this disorder by doing a simple hearing test. It took six hours of neuropsychological testing to come to that conclusion for each of my children.

This would explain why my children do not respond to mine or my husband voice the first time or subsequent times. Why I am told I yell way too often by my mother who means well but infuriates me whenever she mentions it. I must yell in order to get their attention often. I used to think they were both just being defiant and maybe that is a part of it. But for the most part it is the fact that the connectors in their brains misconnect signals to their ears both the left ear. I think I have this disorder too though I have not been diagnosed. This disorder manifests as an inability to hear and can cause the person to speak louder than normally.

http://en.m.wikipedia.org/wiki/Auditory_processing_disorder

Autism or Not?

I was recently on a board where mothers were posting about an article. One mother said she did not like how all these other mothers claim their children who have some autistic traits have autism when really they do not. Her child who is older and non verbal has autism and is considered autistic by her.

I can not even imagine her pain being that my own child learned to speak at the age of 3 and 1/2 and hers is closer to 18 and can not speak. Does that really mean that my child does not have autism while hers does? This kind of hurt me a little.

I sometimes wonder how these kids can be so different not only in terms of background but in terms of abilities yet they are all on the same Spectrum. Now I hear they will take away the diagnosis of Aspergers and PDD-NOS all together in 2012. Here is the article i read on this. http://www.psychologytoday.com/blog/positively-autism/200912/no-more-asperger-s-syndrome

What does this mean for higher functioning children like mine who although they are verbal still have a lot of communication problems? Who have no friends and are not able to because approaching others their age is scary or because they do not have a clue what to say. What happens to the child who being high functioning appears normal but stims continuously because their surroundings and people are too much to handle? How could that child ever be considered not autistic by anyone?

What good are words if you do not have a connection to them or know how to use them appropriately. Do not misunderstand me I know how tough having a child who is nonverbal can be our son went through his worst times during that period. I would not wish those times on any parent but how can my child be less autistic because he has words. He is still the same reckless and impulsive child. Words gave him another way to express himself but they have not changed who he is. Through therapy we learned different ways to deal with meltdowns but let me tell you NO amount of words a child can say will make him stop melting down in a store or anywhere else for that matter.

Really this is more a crazy mom rant but I get worked up when people talk about what autism is and isn’t. If I could I would put myself in my child’s shoes and see what makes him tick. Why he has the most difficult time speaking how he can know and recite every line of his favorite book but when I ask him a question like When did you last pee in the toilet? Or any “Wh” question he has no response other than I peed on the toilet. He knows how to read a digital clock he can tell me what time it is but when asked a “Wh” it is almost like his brain disconnects. I am hoping the book I bought on social stories will
give me some answers on how to reframe questions to get an answer. If that does not work I will try to find a “Wh” book. I’ll write more when I find discover more on that topic.

Autism has been an extreme learning process for us. One that I have tried to submerse my self in. I don’t look for answers medically because I know there may never be any. I do search for perspective on autism all parts of the spectrum and an answer as to what I can do now. I can not change what may or may not have caused my sons autism so for me there is no sense in dwelling on it. For me and my family I only hope to understand why my son behaves in each manner and how I can help him be the best him he can be.

I hope for the sake of future children and their parents that some brilliant scientist or a team of them cracks the code and figures out
A) What the cause or causes of autism are

B) How to solve those causes before more children are born with or somehow develop autism

Until then all we can do is help the children we have now and do our best to raise awareness every when go!!

20110809-020357.jpg

Things I Often Remember

Lately I have been thinking back to when I first realized I had a different sort of child. It is the start of my search for answers and a time I’d rather not recall so often.

We had been questioning what makes our boy tick for the longest time what felt like forever… I had always known or felt he was different. My husband did also though he tried not to admit it to himself or to me. Admitting it made it too real I suppose.

I think about the ways I disciplined a not yet talking boy of two who had just started to walk and was an absolute terror. Within months of his walking every single drawer but one in our kitchen was gone. Broken by a sweet two year old who I can only imagine was frustrated and in anguish when he broke every single drawer. Sitting in the ones that were low enough, slamming the ones that were not. Pulling entire drawers out and smashing them. No matter how hard I tried to deter this behavior it happened again and again often times with me standing there doing my very best to keep the drawer in its place.

That’s one of the many things I’ve learned about Autism… Impulse control is almost non existent. Since then our son has tried to jump in front of traffic more times than I can count, gotten lost in a huge mall, has tried to wander off in several other unsuccessful times. We have used counting, reading, a chant that goes When I Say mom you say Adrian so he can play semi close and I can find him when I need to by saying mom to which he almost always replies Adrian or mom Adrian. We have used his favorite object a Teddy bear blanket that my husbands aunt made for his first birthday and which he is obsessively attached to as a calming device. I have also spanked him which never worked and I gave up on. The my parents spanked me and I turned out okay mentality has never been for me and well I haven’t always able to avoid my urge to spank I have tried.

I will never be a perfect parent nor do I think there is such a thing. All I can do is try my best, live with my guilt and remember what I’ve done wrong and learn from what I’ve done to make it right. I only hope that both of my children know how much I love them and are able to forgive me my frustrations and lack of knowledge.

Adrian with his blanket affectionately named Favorite Teddy Bear 🙂

20110808-012945.jpg