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| Thu, 11-16-2006 - 3:05am |
Hello all!
I'm new here, my DS who is 2.5yrs was just evaluated by a psychologist on Monday and he says he may likely have Asperger's. After what I've read, I think I agree! I have another DS who is 5.5 months and a DH who is most likely an undiagnosed case of something screwy!
I decided not to post in the Newbie section because my post is going to have a lot of meat and questions in it...so better to put it up here!
What I am curious about is if anyone posting here has had similar issues with their child. I know, a doozy of a topic. I'm not looking for dissertations from everyone, just to see if anyone is in the same boat as me on a couple of issues.
1. My son's most troubling issue is feeding. He never graduated to Stage 3 baby foods! The little chunks in there made him gag. A lot of new foods made him gag. We first tried a Stage 3 when he was about 8-9 months...since then it's been Stage 2, Stage 2, Stage 2, yogurt, and oddly enough, crunchy things. As he has gotten older, his menu variety has gone down (for instance, there were a few semi-soft things he would eat--grilled cheese, waffles, pizza crusts, etc) not only because he singled stuff out, but because I needed to give him the most nutritionally dense foods and that isn't much when it comes to prepackaged baby foods. Now he's to the point where his menu really doesn't vary much from day to day, and if he even comes over to see you eating, he will wretch violently. Put something in his mouth that isn't acceptable...and watch him gag so hard he throws up whatever he has eaten...
2. Sorta in line with #1, my son has HUGE tonsils. He got that from me, though I never had a feeding issue with it (unless I was sick). When he has a sore throat, he gags on every bite of what he is eating. We are likely getting his tonsils out next month...I hope!!!! I had mine out at 14yrs.
3. How many times can you say ECHOLALIA?!?!?! OMG, this kid is a pure mimic in not only speech, but movement too. He still has trouble sometimes tracing where someone is pointing because he just focuses on the pointing you do and then points with his finger in a different direction. He has an OUTSTANDING ALMOST FRIGHTENING memory. He has memorized several books (even longer ones like How the Grinch Stole Christmas), a zillion songs, scripts from tv shows (he has Finding Nemo DOWN PAT) and toys/games, and that is the only language we get from him. He has just about ZERO communication that isn't a phrase he repeated from us or somewhere else. Now, sometimes he will repeat a phrase when it is appropriate (like, we always say, "Who wants to go outside?" when it is time to leave and now whenever he wants to go outside, he will repeat it). But there is no self-created phrasing.
4. He is somewhat awkward in his movements...goes slowly down and up stairs...doesn't climb a lot on the playground equipment.
5. When he was an infant, initially I was able to nurse him and then he'd fall asleep nursing and I could put him up on my chest and have us both nap together. But that stopped after he was a few months old. I would feed him, he'd fall asleep, but as soon as I would put him up there he would start squirming and fussing...he couldn't be rocked and sung to sleep, he always had to have the swing. Thank god for the swing. Note, at night he woke up often and that lasted until after I weaned him at 20 months, but he was always pretty easy to get back to sleep at night--we co-slept and he would fall back asleep after nursing. I don't know if this is related to his disorder or not, which is why I'm looking for similar experiences. He was never a baby who wanted to recline...try holding him in your arms in a relaxed position, and he'd constantly be trying to sit up.
6. He is mildly hypothyroid. He has been since birth, but despite growing a lot, he has never needed an increase in his medication. We have tried stopping it, but he always ends up needing it--just the lowest does possible.
7. He had a run in with a strange illness when he was about 18months...the docs think he maybe had an atypical case of Kawasaki's disease. They went ahead and treated it, but no one is sure that is what he really had.
8. His amazing abilities at 2.5 years old are...knows the entire alphabet and spells words everywhere at home and when we are out and about. He knows from memory how to spell Toys R Us (LOL! You can tell we go there a lot), cow, mom (though he never calls me any name, much less mom, unless I walk into the room and he points me out). His favorite toys right now are my Speak and Spell from 1978 and the Leap Frog Word Whammer that teaches him to spell 3-letter words. He, in the last two weeks, has gotten into not just spelling the word, but using phonics to sound it out. Just last week he sounded out the word "Magnificent" with no help or even coaxing from us--he just saw a book that had it on the cover and thought he would say it. He can tell you all the planets, including several moons of Jupiter, Saturn, and Uranus, and he can distinguish a galaxy from a nebulae. He loves looking at pictures of galaxies. He knows the 6 colors of the rainbow and other colors like brown, black, white, pink, silver, and gold. He can count to 20 and can count objects if you ask him a "How many?" question.
OK, I'm not bragging here, even though I am extraordinarly proud of him. I wanted to list that because I not only want to know similar troubles any of you have encountered, but similar achievements when your children were this small.
PHEW! I know that is a lot! But I am really interested in hearing your similar experiences. I know people get tired of typing the same thing (I was in the May Miracles 2004 board for a long time) so if you have a story of yours typed out somewhere in another message thread, just send me the link to it!
I would like your thoughts on these two questions...Will my boy EVER eat normally (he is getting food therapy now) and will he EVER speak to me and actually communicate in a way beyond repeating the same dialogue from Play With Me Sesame!?! LOL!!!
Looking forward to hearing more about all of you!
----C


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Yes to most of the questions. To the last 2, will he eat normally and will you have a conversation? I don't have a chrystal ball but I will tell you that it is very likely (well he may always be a picky eater but it will get better).
For personal experience if you like I can go through these for you. I have 2 ASD kids and each is very different from the other. Cait is 12 and Mike is 10.
1) eating - Cait was an extremely picky eater due to sensory stuff. As a baby so was my NT Emily due to her sensory issues which she does have. You will find that is common in these here parts. Sometimes due to sensory issues. Sometimes reigidity (every thing has to be a certain color, etc). Mike is a bit of a picky eater because he hates change. The boy could eat the same lunch every day and be happy. Cait is still picky but she has a great repetoire of foods and is willing to try new things. I know lots of adults who are picky and it is ok. It is a matter of making sure they have a healthy well rounded diet.
2) Tonsils: Actually you got me on that one. Nope. Though I have had mine out.
3) Echolalia: particularly at 2, OH YES! Both of them. I swear every "conversation" was chunks of lines from tv shows. When Cait wasn't echolalic it was this odd langauge where all the words were mixed up. Mike still loves his movie lines and will slip into them if he is stressed. Cait doesn't do it at all anymore and talks my ear off daily, particularly if it is about animals. And yes they had books memorized too. Now instead it is lengthy disertations on Harry Potter or some other novel.
4)Awkward movements: Clumsyness is nearly a hallmark of AS. Mike is actually pretty agile (but he tends more toward the autistic side). He had some motor delays but due to sensory issues. He had bad vestibular problems, didn't cross the midline those kinds of things. He runs kind of sidewards now while looking out one eye. Cait is very awkward and actually had both gross and fine motor delays through preschool. Theraputic horsebackriding and karate have done wonders for that. She will never be the most coordinated kid but she does ok. Both walk a bit oddly.
5) Sleep: Cait - didn't sleep through the night until she was 2. That lasted about a month then she started night waking again (don't remember why) until she was 5. Mike was a fabulous sleeper until he was about 7. It was his way of getting us not to touch him, lol. He slept through the night at 1 month and slept loads. He started having sleep troubles at 7 and continues to not be a great sleeper. However, he will usually sleep through the night now though he may be up late. Melatonin helped that alot.
When Mike was a baby I couldn't nurse him or rock him to sleep. He would scream until we wrapped him tightly and put him in his crib. He was not a fan of being held.
6) hypothyroid. Got me again. sorry.
7)Kawasakis: Mine, no but I knew a girl who did once upon a time. Cait was ill alot her first couple of years though. They are older and on organic diets now with lots of vitamins and tend to be very healthy for the last couple years.
8)Sounds like hyperlexia. Cait couldnt hold a conversation at all or respond to questions but we found out somewhere around 2 that she knew all her letters and numbers. I think she knew them awhile before that because she became enthralled with them at about 18months. Mike knew his early as well though he wasn't obsesssed. However, he knew how to defragment our computer at 2.
Eat normally: Like I said above, Cait is still a picky eater as is Mike for different reasons but they have a healthy varied diet. We can go to restaurants and they are willing to try new foods. Sounds close enough to normal to me. If we are going somewhere where I know food is going to be an issue, I bring snacks for them.
Having a conversation; OH YES! This I remember well. Up to 4 years old I thought for SURE I would never have a conversation with Cait. Around 5 we had our first real exchange that wasn't "i want...". She asked me why about something and listened to the answer. We have loads now. Sure it is a bit different. She tends toward the concrete and I have to make sure to explain some things in a way she will understand but she has even gotten good at asking me to explain if she doesn't. And actually in some ways it is even better than with NT kids. I know moms of NT kids her age that won't talk to thier moms at all because it isn't cool. That doesn't bug her at all. Sometimes we have to pull conversations from her. She would rather talk just about animals or birthdays or parties but it definitely happens all the time.
Mike was a bit tougher. He wasnt as bad with this when little but somewhere aroud 5-7 he started to become more symptomatic. I think 3 things were at play, 1 no early intervention for him, 2- Lots of school stress so he withdrew, and 3- I think he has some underlying seizure activity contributing to it. Oh and 4, he has horrible auditory processing. As such he would go into his own head and conversations, actual conversations were rare. Recently however, they are coming out again more and more. He is in a great school placement, he has been getting speech for about a year and we started him fairly recently on seizure meds. We also have been very cognizant of his auditory issues when conversing with him. As such we have suddenly been getting more and more out of him. YIPPEEEEEEE
So it is always possible!
Renee
First of all, Welcome!
And I'd say that most of the things you questioned are pretty common around these parts. :-)
I'm in a bit of a crunch for time, but I'll address the two major questions you included at the end of your post.
Will your son's eating habits ever be normal? Feeding therapy is a good start, but since every spectrum child is different, nobody can say for certain. My youngest is six (Dx-autism), has an extremely self-limited diet and engages in a lot of the behaviors you described. Her acceptable food list is as follows:
Pop-Tarts (must be name brand)
French Fries
Waffles (frozen...must be plain, no toppings)
Pasta noodles, prefers Ramen (plain-cannot have anything on them)
Cool Ranch Doritos (don't even think about giving her regular)
Cheetos (again, must be name brand)
Chicken Nuggets (must be cut up so she doesn't have to bite into them, and only one brand is acceptable)
Dry cereal
Crackers (plain saltines only)
She will not eat any fruits, vegetables, or "real meats"- but she also will not eat any candy, cookies, cake, ice cream, or any of that other fun kid stuff. If you so much as bring a banana into the same room that she's in, she'll run screaming and gagging, then end up hiding under her bed. I used to really freak out about this, but now I don't. She continues to grow and make developmental gains, so I figure this is the least of her problems. I use a method of slowly trying to introduce new foods. (I touch it with a fork, she touches it with a fork. I touch it with my finger, she touches it with her finger. I lick it, she licks it- etc, etc.) Sometimes it works, but not often enough for this guilt-ridden mommy! :-)
In terms of the echolalia- our daughter had no language at all until 3, and shortly thereafter her echolalia began. She's been in speech therapy since 18 mos. and now she is able to engage in what I call "almost conversations"- and express her needs and wants with language other than what she's gained from TV, movies, etc. She still uses the echolalia a lot as a coping mechanism, or when she chooses to go into "her own little world" because of sensory overload. Again, ever child is different, but some (typically HFA/Aspies) gain their speech skills in what I consider "quick bursts". This was the case with our 9 y/o son, who is Dx'd Asperger's. As a toddler it was all echolalia- but around 3.5 it was as if the language fairy paid him a visit. LOL Within a month he gained almost complete use of the english language. He went from not being able to express his wants and needs, to sounding like a little professor.
In reality, nobody is going to be able to give you the answers you're looking for, because nobody really knows. But we can share our experiences with you, and provide you with some BTDT hope.
Again...welcome, welcome, welcome. I hope you find this group as wonderful as I do!
Amy
Hi C and welcome here! I'm Christie from Ohio....I have two boys, Vaughn (8 yr old aspie) and Jack (2 yrs and into everything....LOL).
1. Eatting......I hate this topic.....Vaughn has a very self-limited diet.....refuses to try new things and will not eat a vegetable to save his life......yes, he eats the same exact things every single day over and over......I stopped fighting with him on this and I make sure he gets his multivitamins and omegas.....get him to drink a fruit smoothie (with added protein powder) at couple of times a week (at least). Something else to consider about the food issue......our kids crave sameness and routine and predictability.....eatting only grilled cheese everyday is predictable and safe (my son knows he likes it and won't be surprised by a foul taste).
The gagging could be sensory related......some kids can't or won't eat certain textures....a good OT can help with this.....there are several moms on this board who have some creative ways to get your child to eat a better variety of foods.....I'm sure they'll chime in.....I'll try to find one of the picky eatters posts to bump up for you.
2. tonsils......hhhmmmmmm - no clue
3. scary memory.....yup....remembers EVERY detail.....I can't remember when Vaughn started having actual reciprocal conversations......hhhmmmmm......4 yrs????
4. Vaughn was never very coordinated.....better now.....we have him in swimming to help this.....working with an OT has helped as well
5, 6, & 7......don't have personal experience with any of these
8. Vaughn only said about 10 words before his 2nd birthday.....and then like a light switch was turned on....he was speaking in 3-4 word sentences....all words very clear and correct.....he started reading and spelling around 2.5 yrs.....he still is an incredible reader and speller (way above grade level).
Does your guy have an strong interests? You mentioned he likes to look at galaxies.....could he his obsession.....Vaughn is obsessed with trains....started around 2 yrs and continues today......obsessions can be totally annoying (like stepping on trains in the middle of the night that are spread all over the living room floor) but they also can be useful.....Vaughn's teachers use trains to help him in school and family always knows what to get Vaughn for his birthday...LOL!
Again, welcome and I look forward to learning more about you and your family.
Christie
Hello and welcome.
I don't have time to give your post the full input it deserves.
visit my blog at www.onesickmother.com
Okay, I'll answer these too. Good questions, by the way!
1. I actually never tried giving Henry Stage 3 foods when he was a baby. But he *did* and still does have a pretty bad gag reflex. If he gets too big of a bite, if there is an unexpected lump or texture in his food, or if something sticks to the roof of his mouth, he'll gag and the food comes back up and out. He is 6 1/2.
2. Henry *had* huge tonsils, but he got them removed this past summer. I'm still not sure that was the right decision for us. He had many bouts with strep, but I always knew when he had strep because his speech would sound "off". He rarely complains about not feeling well, so I have to figure it out from other things. I miss having the obvious clue of his voice--having no tonsils makes his voice sound the same even if he is sick. I have large tonsils as well, but they haven't really caused me any problems.
3. I don't really think Henry had much of an issue with echolalia, although he isn't one for answering questions. He will always ask the question back, but in a rephrased way *or* ask the asker what he/she thinks. His K teacher gave me this example last year. Teacher: Did you understand the instructions, Henry? Henry: Did you *not* understand? Teacher: I'm asking you if *you* know what to do? Henry: Don't you know what I'm supposed to do? Etc. She said if she reworded the directions, then he would get to work.
4.
A lot of that sounds really familiar.
Hi! I have 2 boys, my youngest dx'd HFA when he was 5. He will be 8 in January! We have experienced the gagging and vomiting too! And like most of the other mom's stated, food is a huge issue. Nathan only eats certain foods, but does like to change and swap food on occasion. Now that he is older, he will even "try" something new, if I swear it has NONE of the things he dislikes in it!! LOL
Nathan has a good memory too....but not a real word for word/script type memory. His cousin has that skill (also dx'd recently with PDD-NOS).
We have alot of echolalia too. It comes and goes depending on his stress.
Nathan is clumsy at times, not too awkward, but EXTREMELY SLOW!!! He's slow with pretty much everything he does. Likes to take his time, and is a perfectionist!
The eating and the communicating seems to have gotten better with us. I think that it may always be an issue, but its nice that things are getting better.
Nice to meet you!!
michelle
My DS had a lot of food issues right from the start. I could not even get him to eat cereal as an infant. I had to breastfeed until age 13 months. I thought that was weird, but the pediatrician said it was okay and that breast milk was a complete food and all he needed (he did thrive as a baby and was plump :)
As a toddler, I remember my son as being a picky eater. (no Stage 3 baby food either).
At 8, my son is still somewhat picky. But, does not gag.
You should probably have your son checked by an occupational therapist. The food thing could be aggravated by poor oral motor planning. My son got some OT for that from age 2 until 3.
About reading, sounds like your son is hyperlexic. You might want to check information for that. There are certain traits that go along with hyperlexia.
One more thing, to help with the oral planning, get a bunch of fun whistles. All different kinds. Blowing whistles or bubbles help. Another fun game, is to blow cotton balls through a straw.
When my son was that age, he had great difficulty blowing whistles and bubbles. But, eventually, he got there.
I can relate to several of those issues.
#1, Haley (9yo Aspie) is very picky about foods. Has to be simple and certain textures have to be avoided. Meal time can be very frustrating some days.
#2, She also has huge tonsils. They take up most of her throat it looks like. She gags very easily. :(
#3, she is very repetitive in her speech. She will say the same sentence or phrase over and over again. In addition to that, she has no control over the volume of her voice. She talks so loud and constantly needs to be reminded to use her indoor voice.
#4, She tends to be rather clumsy but is getting better with the awkwardness. Been a slow process though.
#5, With Haley, she had to sleep in her car seat/carrier. No matter what I did, she would not sleep laying flat.
#8, Haley's "little professor" subjects are dinosaurs, pokemon and dog breeds. She can pronounce them all and recite a bunch of facts about them. Its amazing how much information these kids can retain isn't it?!
No way to really know whether the eating or speech will improve dramatically but it is likely. Haley has improved quite a bit over the past year in many areas and continues to do so.
Jill
Mom to Erin (19) and Haley (10yo Asp
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