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Registered: 05-26-2000
New Here
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Sun, 08-28-2005 - 6:49am

Hello all! I am Heather, mommy to Josh (5) and Justin (23mos). I hope my little intro doesn't get too long. Josh is my wonderfully unique child. At about 9mos our ped referred us to EI where the only dx they could give at that time was congenital hypotonia due to his significant gross motor delay, and the PT said that he showed signes of sensory integration dysfunction as well as some PDD tendencies. I did a lot of net searching back then, and it all seemed to fit with aspergers or autism (he was very young, so we knew it may take a while to see where he would fit), from the get go we had problems with eating, sleeping, riding in cars (screamed during car rides except at stop lights), noise (until recently couldn't play any music at all, and still can't vaccuum without him running away with his hands over his ears), he would bite himself leaving bruises,but it didn't seem to hurt, it seemed like it took forever for him to hug or kiss us without begging him to do so, he finally now will at least come to us if he is upset or hurt, he used to run away and hide screaming more if we tried to console him,to go to sleep he does this ritual violent swinging of the head back and forth while banging one leg on the bed, he won't walk on grass barefoot, and wouldn't touch certain textures,he knew numbers (recognition)1-9 by 12mos, and the alphabet by 18mos and was consumed with numbers letters and shapes until about age 3 when it switched to a star wars obsession (he can tell you details about every character, even recognise whose lightsaber is whose by just looking at the base without the color of the lightsaber) he plays best one on one with children that he is very familiar/comfy with, and in new situations he simply shuts down and tries to hide. Sometimes if he decides it's an army man day he'll line them all up on the coffee table in a really neat "wave" pattern according to height. When he is nervous he does this thing with his fingers..can't really describe it. That's a bit of his traits (oh there's more, but I don't wanna ramble here LOL). Anyway, at about 2 and a half we "graduated" from PT, because he no longer met the criteria to be in the program, but the therapists said he still had deficiencies in certain areas. Well, we just went on as normal, and now he starts kindergarten on Monday. It's interesting how things happen, because my boss's wife is a SEd teacher at my son's new school, and although I'm sure after interacting with Josh she had suspicions, it wasn't until last week that my boss gingerly brought up the subject. I explained what went on when he was younger, and he seemed relieved that he hadn't upset me. LOL Actually I was relieved that these still "different" traits that my son has was not being seen only by me and hubby. So anyway, his wife had a meeting with Josh's new teacher, and come to find out she is the only K teacher that has in-depth experience with spectrum kids. On one hand, I kinda feel like maybe she'll end up saying that he's a normal 5yr old (i don't really know any other 5yr olds to compare to cause we kinda secluded ourselves from friends with same aged kids back during PT, cause we got depressed in a way when seeing what he wasn't doing....I guess ignorance was bliss back then...if all we know is what he does it must be normal LOL), but on the other hand I'm kinda hoping we can put a name to this and learn ways to help him cope and get on with life. Just reading some of the posts here has set me at ease. I am seeing so many things that I can relate to!! I'm so glad I found this board! I do have a question though....as i said i don't really know other 5yr olds to compare, but are the following "normal" 5yr old behavior, or possibly other "traits"? (these are the two that really concern me when starting school)
-Seemingly not understanding/hearing a given direction until repeated about 10 times, and still having to show him, or help with the task
and
-after finally getting something like "Josh, put your shoes on" through, and he is standing right by them he says "I can't find them mom" and when you point them out, still "I don't see them mom"
Okay, I've written a book here. If ya made it to the end, thanks for letting me ramble on the intro!! :)

Heather

iVillage Member
Registered: 05-26-2000
In reply to: mommy2josh
Tue, 08-30-2005 - 9:44am

Hi Cathy, great to meet you too!! That is exactly how I feel! LOL How the heck am I supposed to know what is a boy thing and what isn't? ROFL
I am definatley going to have the school evaluate him, and hopefully we'll get somewhere with that. Thanks for the first day well wishes, all seemed to go okay. Although there were a lot of tears going on, when he came home he said he guessed it would be okay to go back (although this am was a different story). He told me when he got home yesterday that he tried to talk to his new friends about star wars, and then said never mind cause no one would listen to him. That made me feel very badly for him, but he said that one other boy had a star wars backpack, and I told him that the little boy might like to talk about star wars if he likes it enough to have the backpack, so maybe he'll hit it off with him today. I'm crossing my fingers.

Take care,
Heather

iVillage Member
Registered: 05-26-2000
In reply to: mommy2josh
Tue, 08-30-2005 - 9:37am

Hi Michelle! Great to meet you! Yes, it does help! Thanks for the input and info.I will definately look into having the school evaluate him. Hopefully after he adjusts to the routine we'll be able to better gauge what areas we need to focus on. I hope the first day of first grade was great for your little one!!

Take care,
Heather

Avatar for cathby
iVillage Member
Registered: 05-16-2003
In reply to: mommy2josh
Sun, 08-28-2005 - 8:34pm

Hi Heather,

Welcome! I am Cathy, I am here b/c I have a 4-year old DS, Jack, who is PDD-NOS. (I also have two girls, ages 7 and 19 months, who are typical.)

I often wonder what is typical for Jack's age, since he's my only boy. He'll be doing something and one of the therapists will say "That's a boy thing!" ("Uh, OK, how am I to know that?!)

Anyway, I can tell you what a typical 5-year old girl is like... Their interests, which can be intense (my daughter LOVED arts and crafts) are more varied than an Aspie. My DD also loved Barbies and horses, and swimming. And she didn't get "stuck" on one topic -- if a peer wanted to talk about ice cream or whatever, that was fine, too. It was more about the interaction than the topic, if that makes sense.

I def. vote with asking the school district to observe him (in our district it's called a "Child Study Team.")

You reminded me that today is my BIL Josh's bday, so I'm off to write him an email!

Good luck on the 1st day of school!

Cathy

iVillage Member
Registered: 02-24-2004
In reply to: mommy2josh
Sun, 08-28-2005 - 2:10pm

Hi Heather!

Welcome to the board! I'm Michelle, sahm to Tyler NT 8 and Nathan HFA 6. Nathan is starting 1st grade on Tuesday, so I'm a bit nervous too!

I would look into having the school district evaluate Josh. It is free, and he might be able to qualify for some support in class. The school district can't provide him with an actual medical dx, but if he could at least be given some help if needed in any area.

Nathan has an IEP, so they have goals for him to work on and reach throughout the year. He also receives speech therapy at school. He has expressive and receptive issues and social interaction problems too. He deals with anxiety and sensory problems, as well, although these things tend to surface more when he's stressed or excited!

We had the vacuum issue too!! And Nathan still doesn't like to walk on the grass with his barefeet. Actually, he wears socks constantly...so we rarely see his feet! LOL And for your questions.....I have to repeat things to Nathan too. Not always, but sometimes he gets lost in his own world or in his thoughts. He says he thinks about things constantly. I believe that this does distract him. And he has a tendency to not "see" things that are right in front of his face too!!!! Again, these things surface more if he's distracted. I can usually tell...just by looking at his face.

HTH

Michelle

iVillage Member
Registered: 05-26-2000
In reply to: mommy2josh
Sun, 08-28-2005 - 11:57am

Nice to meet you Paula, and thanks for the kind words and advice! I can use any that you have right now. I guess we'll see as time goes in school. I am very greatful that my boss and his wife approached me. It was a relief to me in a way. Oh, and I am quite often a novel writer, yes, but it is even worse in person....I'm quite a chatty person!LOL Nice to know that it isn't just me that can compose a book in one little message.;)

Take care,
Heather_

iVillage Member
Registered: 05-26-2000
In reply to: mommy2josh
Sun, 08-28-2005 - 11:46am
Hi there! Thanks for the info and tips!! It is so nice to hear someone else say that they have children that are similar! As for the gross motor delays..he didn't hold his head up until about 5 mos, didn't sit until after a year, started to army crawl at about a year or so, and finally walked at about 19-20mos. We kept telling the ped something wasn't right, but it wasn't until his 9mo well baby check that they referred us to EI (ped said they were unsure what the prob was, but the little checklist that they go down on each visit was always behind, and even yelled at us for not bringing it to thier attention sooner (even though we did EVERY time)) so the therapists did some testing and came up with hypotonia for sure, and other deficiencies that they couldn't put into a definate category other than to say SI and autistic tendancies. I will be honest and say I kind of went into denial about everything else until the thought of kindergarten started entering my mind. I'm thankful that my boss and his wife went ahead and said something to me, cause I don't think I would have said anything to the teacher unless she noted a problem. I've decided after the ped and EI that I really do need to be proactive and advocate for my son. Who knows him better than me right? LOL Any tips for the first day (tomorrow, arrgh!)?
iVillage Member
Registered: 06-25-2003
In reply to: mommy2josh
Sun, 08-28-2005 - 11:34am

Hi Heather,

Welcome to the board! It's nice to have another "novel-writer" here. I won't be alone!

Well, I have to commend your boss and his wife for approching you. I have seen several kids with issues, and it is very difficult to bring the subject up with a parent. It is a sign of character and caring that they did it. I know from experience that you can never tell how people will react -I nearly took my best friend's head off when she said something to me, when my son was about 3. (She had been my BF since 7yo, and I very nerly stopped speaking to her. Hello denial!)

I have to say, reading your description of Josh, I see a few Aspie "red flags" there. I think you would be wise to go through the school district for a full formal evaluation of him. They should evaluate his speech and recetive language, and give him an OT and possibly a PT eval as well. They should also do a psych eval and IQ test. This will give them (and you) a good benchmark of where he is and where he may need extra help.

I am Paula BTW, I have two kids on the spectrum. Peter is 7 and HFA (High-functioning Autistic) and Siobhan (DD) is 5 and Aspie (not official yet).

I can't answer your questions on how a "normal" 5yo should act! I don't have any normal kids! However, my son Peter does very similar things to the 'shoe example' you gave. I think in his case, it is a combination of things: distractability is one -if I turn the TV off, his vision improves remarkably! Also, I think it is a pattern-matching thing. He may have a particular picture in his head of how his shoe should *look* and if the shoe is at a different angle, say upside down on the floor, he can't 'see' it because it doesn't exactly match the picture of "shoe" in his head. KWIM?

Another possible explanation could be a potential visual-processing issue, which can be a difficult thing to find and pinpoint at that age. I would start with the SD eval, and work my way out from there.

The difficulty in following directions is another thing we experience in ths house. For a long time we used visual aids; pictures and photographs (actually, we still do). My kids are very much visual learners (as am I). If they can *see* something rather than hear it (and ideally both) they "get" it a lot quicker.

I hope some of this helps. Please stick around, tell us more about yourself and feel free to ask as many questions as you need to.

-Paula R

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 03-26-2003
In reply to: mommy2josh
Sun, 08-28-2005 - 11:31am

Hey there, I made it through.

Your josh sounds alot like my cait. What kind of gross motor skills did they notice then? I wish my ped would have picked that up earlier. Cait sat up on time for some weird reason, but didn't roll over until 7 months, etc. She didn't get any early intervention because we were convinced to "wait and see" and it was her language that concerned us at 3 mainly because she couldn't follow simple directions. Also, no one could understand her because she had this weird language. She had words and phrases but it was just really weird. We had her tested and were surprised to find just how delayed her language was. She also know the numbers and letters by 18 months, had animal obsession (still does), lots of sensory stuff. etc. She went to special ed preschool and was diagnosed at 4. She is now 11 and in middle school. She is mainstreamed for all academics and has been with varying levels of support since kindie.

Those last 2 things you mentioned are definitely worth looking into and something both my aspies do. As for the not following directions until the 10th time you will want to get his language evaluated as well as look into possible auditory processing issues.

As for the not seeing things right infront of them, yeah Cait does this especially. Mike will to but not as much. I am trying to remember what it is but I think it is part of the executive function problem. The brain has a hard time organizing itself. Also I believe it may be a vision sensory issue. I know it happens but can't remember why. Best thing I do for that is organization, organization, organization. SO for things like shoes we have a set place where they go. Then they know where to look. Same with other important things they have to look for often. Then when they are stressed and can't see, I help show them. Since Cait has been in speech for a while and is better with directions I can explain where it is in short bits if she is in the right kind of frame of mind. like "Cait your shoe is on the floor in front of your bureau". That is even long enough to stress her if she isn't in a good place so I will make her visualize. "Cait think about where your bureau is. Where is the front of your bureau? Where is the floor infront of your bureau? look there". Being as specific as possible while breaking it down into as small chunks as possible. For now start with pairing this verbal with visually showing him at the same time.

Renee

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