3/27/11

understanding....

I have to start with saying I do not know what blogger is doing to my post -- I have typed it all up nice with good spacing making this long post easy to read -- and for some stupid reason, it's taking out all the spacing making it one gigantic blob of words. No one is going to want to read that. ARRRRGGGHHH.

so if you are reading this in it's blob form, bless you. if it's not in blob form when you are reading it, then I finally got the issue fixed, and bless you too. :) Here's what I really have to say:::::::


I have gotten a little obsessive about reading blogs lately. Most of them are written by women who are moms to special little children - children like Thomas. And the more I have read the more I am starting to understand.


We know Thomas has PDD - Pervasive Developmental Disorder - and as he is getting older and working in the school setting we are starting to see him more categorized into the Aspergers Syndrome part of the autism spectrum. When he was little, I didn't think he "fit" - but as with ADHD, it's tough to diagnose small kids, because they could just be being little kids. It's not until school age that things can be "measured" against something "normal".

So I just wanted to write about a few things I have stumbled across, as I am working to be the best mom for my special child.

here is a quote from Wikipedia: "A pervasive developmental disorder, Asperger syndrome is distinguished by a pattern of symptoms rather than a single symptom. It is characterized by qualitative impairment in social interaction, by stereotyped and restricted patterns of behavior, activities and interests, and by no clinically significant delay in cognitive development or general delay in language. Intense preoccupation with a narrow subject, one-sided verbosity, restricted prosody, and physical clumsiness are typical of the condition, but are not required for diagnosis."


yeah, like that isn't difficult to understand so on one blog, one mom had it broken down to make it much easier to understand, and I took most of what follows from her and changed it for Thomas.

1) Problems with social skills - Thomas doesn't know 'proper' or typical social cues. He speaks out of turn, he can't follow conversation, and often has 'outbursts' which can make others around him not want to be around him.

2) Eccentric or repetitive behaviors- these behaviors are usually stimming, helping him 'self regulate', and they include his bouncing his head on the couch rhythmically and clapping or flapping his hands.

3) Unusual preoccupations or rituals- A child with Asperger's syndrome may develop rituals that he or she refuses to alter, such as getting dressed in a specific order. Thomas has to have his left shoe on before the right shoe, if we do it wrong, he melts down and we have to do it over. He also has to wear certain jammies with certain goodnights on certain nights of the week. I will be making this easier on myself soon - he is outgrowing his 4t jammies, so when we get new ones they will all be the same, no more scooby doo one night, and lightning McQueen the next, etc. His underwear is the same issue. I dealt with that problem today by putting dividers in his underwear drawer labled with the days of the week, so he can put the correct characters in the certain days, so we won't have anymore meltdowns when it's time to get dressed. And I can't forget his Handy Manny shirt that he wore everyday for several months. He finally outgrew it, and now insists he has to wear a green shirt everyday.

4) Communication difficulties-People with Asperger's syndrome may not make eye contact when speaking with someone. They may have trouble using facial expressions and gestures, and understanding body language. They also tend to have problems understanding language in context. I had been taught that to help a child to follow directions you get them to make eye contact with you, so you know that you have their attention before telling them what you needed them to do. Well, this doesn't work with Thomas. We could have been holding his face in our hands with our faces close to his, trying to block out everything else so he would focus, and he STILL could not look us in the eye. In normal conversation, we can be talking with him about something, and he acts as if we aren't even there, and can start talking about something else that is on his mind (which could be anything from something someone in his class did a month ago, to something that he did yesterday).

5) Limited range of interests- A child with Asperger's syndrome may develop an intense, almost obsessive, interest in a few areas, such as sports schedules, weather, or maps. I remember my aunt told me of a little boy who knew every kind of vacuum on the market. It was his "thing". With Thomas, it's Letters. When we used to visit Grandma Hansen upstairs, Thomas had no interest in the toys that she had out for him to play with. Instead, he would go to the bookshelf in the hallway, lined with her old Encyclopedias, and would have her read the letters to him. For a while he was obsesed with the letter D book. He knew almost all the words in there from Dagger to Dogs --he had no interst in all the types of dogs, like I figured most little boys would be -- he just kept turning pages to the end of the book reading all the D words. We only have 2 songs that we can sing at Family Home Evening - "Thomas's song" - which is Nephi's courage, and " Grayson's song" which is I am a Child of God.


6) Coordination problems- I am not sure that this would be one of Thomas's symptoms. It is common for movements of children with Asperger's syndrome to seem clumsy or awkward. But Thomas is great at throwing, running and jumping, and riding his bike. He does however struggle with using his utensils to eat, holding a pencil (doesn't help that he is left handed), and cutting with scissors is also a tough task.


7) Sensory issues- many kids with Asperger's syndrome are either extra sensitive or less sensitive to sensory issues. Thomas is very sensitive to sounds. He can hear things that I barely notice in the background, and will ask me, "what's that noise?" One time he had asked I had to really listen to hear what he might be asking about, and finally decided he was hearing the very quiet hum of the refridgerator. Thomas also makes loud 'screeching' sounds, which I have to guess are to 'self regulate' for sounds.

8) Difficulty with regulating emotions- If you know what mood swings on a pregnant lady look like, then you can imagine the mood swings of a kid with Asperger's. Things that wouldn't seem like a big deal can make him cry for hours, especially if I can't "get thru to him" and break the "sad" cycle. I have found that if I try comforting him by saying "it'll be ok", it only makes him more upset, because he doesn't understand what that means. Recent meltdowns we have dealt with began with: Grayson touching Thomas's white board, his friends came by after school to play without prior "prep" for him to be ready to deal with that change of normal afterschool routine, and the whole picture day fiasco I wrote about last week.

9) Lack of empathy- this one bothered me a lot when he was little, and we didn't know much yet. I was quite worried that I had a "broken" child when he laughed when others cried. We tried to teach him that he was supposed to say "I am sorry you are sad", or "it will be ok". He doesn't say it still, but at least he doesn't laugh anymore.

10) Difficulties with transitions and rigidity- Schedules, plans and lists. here at home, I let Thomas choose his own activities as he keeps himself busy, so when it comes time to do something we need to do, he doesn't transition well. Eating lunch and dinner can be huge battles most days. Eventhough it's something we do every day, he still doesn't understand why he has to stop doing what he is doing, and come do what we say (even if he is hungry). Again, you'd have to read the post about the picture day fiasco.


11) Difficulty with imaginative play- this was another thing that boggled my mind when he was little. My sister in law asked if he was like her boys, and just automatically knew how to make car noises when he played. I said he didn't. And he didn't play with the cars the way I would have expected most kids to play. Instead, he lined them up. (which I have learned is very common with AS kids). Children with Asperger's can be very literal and can have a difficult time with doing things like pretend play. This can be very difficult for the child with Asperger's with playing with other children.

12) Skilled or talented- Many children with Asperger's syndrome are exceptionally talented or skilled in a particular area, such as music or math. For Thomas and his preoccupation with letters, he is so very smart and is already reading (which astonished his sundayschool teacher when he started in her class in Jan). He has a very good memory *which can be a pain in the neck most of the time. Because of his ADHD, though, it is hard for him to really focus. He can read --- but he chooses not to, because that would require holding still.


13) Scripting- Kids with Asperger's tend to "script" things out and do them exactly the same, or say the same script over and over again. Thomas has some issues with impulse control. He knows exactly what he is doing because he will walk up to me and say "I'm going to pinch you" - and even though he knows it's wrong he does it anyway. He doesn't do it maliciously - he just cannot stop himself from doing it. When he is "bouncing" on the couch, he will say things over and over again, and it's often interesting to hear what his little mind is focused on at the moment. It could be about how he is going to have chocolate milk at school, and how he doesn't like strawberry milk, and he doesn't like the school's juice, only white milk and chocolate milk. It could be about something he saw on a show - like the whole storyline of a word world episode or how he wants to be the turtle from Wonderpets and his little brother is the duck (this is why he will only wear a green shirt, by the way, he is a turtle.)


So there ya have somemore info on our wonderful yet challenging brilliant active little boy.




Poor Grayson is going to think we just ignore him, cuz I am always talking about Thomas. I promise to blog about him soon.

4 comments:

nachista said...

You've got a lifetime of work ahead of you. Stay strong and don't be afraid to ask for help when you need it!

The blogger paragraph thing hit me today too. I have had this problem in the past and it relates to the code for line breaks. It just randomly happens sometimes. Your post looks fine to me and it has all the appropriate paragraph breaks. But I can't get hard returns into my own blog now. I may have to copy and paste to WORD, then add the hard breaks and copy it over so that the codes carry over. Let me know if you figure out how to fix yours.

nachista said...

You can go to the Edit HTML mode and insert your own paragraph breaks by entering this code between your paragraphs...




Or you can go to Settings, Formatting, and Convert Line Breaks and click "YES". Save, then log out and log back into blogger. You may actually have to reboot to close the internet connection and open it back up again.

Apparently this glitch has been floating around blogger for about 3 or 4 years and no one seems to know how to permanently fix it. It just sometimes goes away on its own.

Tam said...

Mindy - I think Thomas fits the sub-syndrome (I'm probably using my own term there LOL) of Hyperlexia. The reading and letters. My son started recognizing them at 2 (well, numbers first maybe) and could recognize/'read' whole words. A couple of his favorites were exit and stop from signs. We used to entertain him at restaurants by writing words on the paper mats. LOL He was only like 3 when he discovered you could rename things on the computer and My Computer became exit90. LOL He always liked to put the closed captioning on on the t.v.
The hyperlexia site no longer exists but I printed a whole book of pages from it many years ago. I'll try to scan some of them in some time for you.

nachista said...

I did some digging about the hard returns disappearing in the posts. It turns out that Blogger is aware of it but they aren't publicly acknowledging the problem.

The issue is a formatting problem for Internet Explorer issues and some coding that Blogger just switched to this week.

Apparently if you use any browser other than IE you don't have this problem. We already have Firefox loaded so I am using that from now on. COMPOSE and Edit HTML both work as they should on Firefox.