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So, our youngest was re-evaluated by the developmental psychologist last week, and her diagnosis changed (increased?) from cognitive deficits to cognitive deficits AND autism. Now, I was initially thrilled to hear autism, because I thought that was supplanting the cognitive deficits diagnosis. But now that I've read her report, it feels hopeless - yet, at the same time, I can't help but wonder if autism can LOOK LIKE cognitive deficits?Thoughts?A is almost 2.5, and here is what he CAN do:*make eye contact (though not to communicate)*"ask" to be picked up by raising his arms*sign "more" (for food, drink, sometimes for activities/toys)*drink through a straw, self-feed finger foods*walk, climb stairs (crawling)*"problem solve" in familiar situations*is very cuddly*"helps" with putting his shirt on by putting his arms through the arm holes*scribble with a crayon*understands No, Bed, Eat, Drink, Come, Sit/Down (I think) (and no, I don't mean for these to sound like dog commands - they are used in regular speech, but those are the concepts I KNOW he knows)Here is what he CAN NOT do:*use eye contact or verbal gestures to communicate (such as pointing, waving)*speak*use utensils*"problem solve" in unique situations*dress himself*mimic*engage in reciprocal playHe has received EI services (sometimes sporadic), and speech therapy for the last 6months. He has received PT and OT also, but sporadically (issues finding providers). His play skills are improving, his eye contact is improving, and he is generally 'more engaged' with the world. He IS starting to toe-walk, and can "zone" when overwhelmed (I actually thought he was deaf, he could tune out auditory stimuli so well).None of A's therapists (except for the Infants & Toddlers team lead, who informed me on day 1 - before she had even met him - that he wouldn't amount to anything), his daycare, or other people he interacts with regularly (including family) feel that he is "mentally challenged" - but that we haven't necessarily found his "key" (though I feel we're getting closer, w/ASD & SPD diagnoses). Only this one developmental psychologist, who has seen him twice, for a total of 3 hours, feels that he is so significantly delayed and affected by austism that she expresses little hope that he will improve. She bases this on the lack of MAJOR improvement over the past 6mos, despite lots of therapy and a consistent family environment - but I keep thinking that maybe we haven't found the RIGHT therapy, and that a local autism-focused therapist (who we can start using after the adoption) will have more success.Who do I believe? Does he sound like a child who is so far delayed that he may never get enough skills to live on his own? I honestly don't think so, but I'm having a hard time convincing myself that my experience w/him is more "correct" than the doc's perspective. Maybe I'm just being too hopeful?
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I work with a lot of kids with ASD, and in my limited experience, 2.5 yrs old is usually too early to tell. Lack of progress despite intensive therapy is not a great sign, but as you said, it could just be that you haven't found something that "clicked" yet. I've met a child who was non-verbal, couldn't keep clothes on, did nothing but rock and scream at 3 years old. After 3 years of a good ABA program, that child was mainstreamed into kindergarten. In my opinion, at this point, the best thing that you can do is to keep calm and carry on...if he has cognitive deficits, he will still need to learn the basic skills therapy would target at 2.5 yrs. If he doesn't have cognitive deficits, he will still need to learn the basic skills therapy is targeting at 2.5 yrs. With each "new" diagnosis for my son, I remind myself (over and over) that he is the same child today as he was yesterday, regardless of the diagnosis. I know the not knowing can be worse than the actual reality of a diagnosis.
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Was he alcohol exposed in utero? My son was VERY delayed when he was younger; at 2.5 we took him for an assessment and were told they could not rule out mental retardation. We were devestated! Now at almost 6 I see a bright, talkative, sweet boy. Don't get me wrong he has issues and is delayed compared to his peers. I feel like we have seen every specialist known to man and still are trying to figure it out. Have you gone to genectics or neuro? If they are giving an autism diagnosis you need to start proper intervention right now! We had everything from autism, CP, etc thrown at us. Finally about a yr ago they labeled him Alcohol Related Neurodevelopmental Disorder. I know how frustrating and hard it is, but keep advocating!!
Adoptsis - A has been getting speech therapy for 30 min 2x weekly for 6mos, and special instruction through EI 1x weekly for about 8mos. PT & OT just restarted after a lapse of 4+ months due to provider issues (he had just been evaluated when both therapists left - so his services never really started). Would 1hr of ST and 30min of special instruction count as intensive therapy? In that time, he's learned to walk, crawl up stairs, sign "more," make eye contact, put toys "in", stack rings on a stake (though not in order), and will "help" with his hair brush and tooth brush if given them when we are done (though he only makes 1 or 2 swipes before he chucks the brush aside). To me, he's made progress, and the therapy hasn't necessarily been intensive - but is that b/c that's all I WANT to see?
On a somewhat unrelated note - does ABA TEACH children skills? Or just correct them when they don't do it correctly, but rely on them to self-start?
Shy_bear - prenatal reports indicate no drug or alcohol use during pregnancy. Mom has very low functioning (IQ in the 70s), and his bio half-brother is also delayed, though he didn't even START services until after he was 3yo. Those factors are what lead the EI coordinator to indicate that we shouldn't have hope.
We have done neuro - he had an MRI, his brain is slightly smaller and less formed than it should be, but other than that, nothing significant. I'm waiting to hear if we can get referrals for genetics and metabolic testing.
We are hoping to have an adoption date soon - within the next 6 weeks or so...at which point we should (hopefully) be able to begin (more? better?) ST & OT and ABA services...
This sounds really hard. I don't have a lot to contribute. I just wanted to say that I've spent the last 1.5 years working 25 hours a week with a child on the spectrum. He has gained most of his speach and all of his academic skills during that time. It really was a matter of finding his "key." He has gone from speaking in 1-2 word phrases to speaking in sentences and holding conversations. (Albeit in an indiosyncratic way.) He even tells jokes. He was 9 when I met him. So I think 2.5 is way to early for anyone to say that your son won't improve. R still has significant delays in some areas. But he clearly has normal cognitive functioning. His math skills are way above grade level and they were pretty much nil when I met him.
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To answer your question, I wouldn't consider that intensive at all. The students I work with attend a special needs preschool, and they get around 10 hours a week of ABA and an hour each of Speech/OT at school. That is in addition to an intervention specialist leading their classroom. Some of the students get between 4-6 hrs/week of supplemental ABA in the evenings (my son will begin his this week). For our lower functioning and/or younger students, the behavior specialist is recommending a 40 hr/week ABA program to replace the preschool setting. One of my kiddos attending a full time program over the summer and made incredible progress. ABA will absolutely teach skills; it breaks skills that most kids learn from their environment down into very small steps. A good ABA program will then help parents transfer learned skills into the home setting--my son will get services in the office, but most ABA programs can be implemented in-home as well. My son is very mildly autistic but has huge negative behaviors...if he were younger or lower functioning, I would absolutely put him in a full time ABA program if possible. It's evidenced-based, and I've seen it work. Obviously, every kid is different and it's not a magic fix...but it's worth a try, especially since he's so young and you have a window of opportunity to develop those skills.
Can it increase a child's IQ that they were born with? Probably not. Can it increase a child's ability to function, complete tasks, etc., so that they can show what they are actually capable of doing? Yes. My son's working on compliance (following adult directives, accepting no, etc.) One of my kids at school is working on following 1 step directions: sit down, give me ____, etc. Once he masters that, he will work on more complex directions, etc.
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(Sorry if this is jumbled up)
The list sounds a lot like my older son. He 'started' talking about 6 and was at about 30th percentile for language development by 8. He had been nonverbal despite being in speech therapy since he was 2.
My son has no congnitive issues, he actually has a IQ in the genius category accordning to his tests.
One important thing that I noticed in my son was his extraordinary problem solving skills. He could do 300 piece puzzles before he learned how to dress himself. He could also draw very well. Despite being nonverbal, he learned how to read and write on time. He could write his name before he could say it.
I think a lot of people were surprised that my son could keep up academically (he was mainstreamed and eventually put in advanced placement classes) when he was so developmentally challanged. He has usually been ahead academically, especially in math and science.
My son is so smart but he is still not functioning at his age. I am still waiting to see how his development continues, he is now 16.
I think that a child can 'appear' to have congitive issues when they don't. Sometimes it is just hard to really know, even for professionals. . .
He sounds similar to what my son did at that age.
My Biological son was okay with receptive speech, but his expressive speech was very low. Everything he called a tree. He was unable to even learn sign language that I used. I had to hold objects in front of him and ask what he wanted, otherwise he would just look blankly at me. He would seek out a hard surface and bang his head, for he struggled to communicate what he wanted (If he wanted to be outside longer and we came in.). he would be hyper-focused on certain themes and only play as such (car washes, elevators and car washes). If we went to a park he would only go on the swings, or circle the playground (even if there were only 2 kids on the whole park). He never responded to his name. I could call his name and he never responded. He tended to stray away from us all the time. He would just walk away while at a store. We had to have a hand of his all the time.
At 3 we him had the school system assess him for speech, and they insisted on doing a full eval. At the end they noted concerns of Autism, and that we may want to get an outside eval to confirm. We never did for I knew that was the case. I worked with students with autism and was hoping I was wrong, but they confirmed my fears. The school system at 3.5 years implemented a full Autism program for him. What a blessing that made for him and his future.
Fast forward to age 12.
He is in Honors math classes. He has also been 2 years above grade level in reading since 2nd grade. He also has A's in almost all of his classes. We had him tested outside of the school 2 years ago and found out his IQ is over 135, but his ability to attend to task is 70. So when he gets bored in school he tunes out completely. The integrative medicine doctor I knew and consulted told us yes he has Aspergers, and anxiety issues that effect his attention. We have him on fish oil and vitamin supplements and have seen awesome results with his attention. He tends to keep to himself and needs to be encouraged to play with his peers. He talks way beyond his years. He loves computers and is always dabbling into creating antiviruses, search engines and email servers. His teachers say "He is an old soul".
I share this information to give you hope. We really we were not sure about his future at your son's age, and now his options are limitless.
If I were you I would get an outside private evaluation and have the school district do an evaluation too. These will give you an opportunity to put a comprehensive plan together that will enable your child to reach his potential.
Prayers you find the answers you need.
-Joan
Love him the way he is now, and prepare yourselves in case he doesn't ever get to be "normal" (which is just a setting on the dryer!) That may mean starting a savings account to pay for therapy or to help care for him as an adult. That may mean making sure that you have someone listed in your will who can handle special needs, it may mean looking into resources in your area. Every kid is different and so no one knows for sure what his potential is. It doesn't matter though, he is still your son and you are still his mom. (oh that reminds me, since your adoption isn't final yet I edited your first post cause you accidentally said his name I just left the first letter since I saw you had done that in later posts) Good luck and remember to take care of yourself and your other kids while you are working on helping him.
momraine
Love him the way he is now, and prepare yourselves in case he doesn't ever get to be "normal" (which is just a setting on the dryer!) That may mean starting a savings account to pay for therapy or to help care for him as an adult. That may mean making sure that you have someone listed in your will who can handle special needs, it may mean looking into resources in your area. Every kid is different and so no one knows for sure what his potential is. It doesn't matter though, he is still your son and you are still his mom. (oh that reminds me, since your adoption isn't final yet I edited your first post cause you accidentally said his name I just left the first letter since I saw you had done that in later posts) Good luck and remember to take care of yourself and your other kids while you are working on helping him.
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Please, never feel like a monster. :( My brother has Down Syndrome and my mother really grieved. It was hard for her to accept. She is the most wonderful mother I know. She has been my brother's supporter, cheerleader, teacher and tireless advocate. But those first years were hard and she's the first to acknowledge it.They told her when he was little that he was hopeless. He didn't speak or walk or play until he was over two. He now lives independently, has held the same job for 10 years, bowls on a league, does martial arts and hangs out with friends to watch wrestling. He has a good life. It took a lot of work to get there. But he got there. Hearing that anyone is willing to write off a 2.5-year-old as "hopeless" leaves a seriously bad taste in my mouth.