My 5 1/2 year old child
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He is ... literally .... about 2 1/2 or 3 in every way, shape and form. He talks like a 2 year old, behaves like a 2 year old, except for his stims, he would completely present like a typical 2 year old. The flapping, running, humming, as well as the major echolalia ( where he can read back an entire 15 minute Spongebob episode) is where you can tell that he has autism. The fact that he is so mentally far behind leaves me to beleive he is also MR. Is there anyone else feeling this way? I hear about all these kids on this forum that can mainstream and blend in to a kindergarten class. I don't see that happening EVER for my child. I'm accepting of my son's disabilities, but I can't help but say it hurts to feel that my son will never move forward enough to be able to integrate into the general population. My son was born in 2000, and I feel like he is starting to catch up. He was always half way to his age-if he was 4 he was more like 2. Lately he has been scoring higher on things and understanding more. I personally believe they have to work through their sensory issues before they can do some things like listen, model, etc. Once we started ABA, he learned a lot too. MR was always in the back of mind, but I just let it go. If I was right-so what, but if I was wrong-OMG. I felt like I needed to keep the attitude positive and the expectaions high. I also spoke with some adults with autism. They helped me understand the importance of paitience and letting him go his own way. Forget the milestones. Focus on your child's strengths and go from there. That's what I did!I tell people he is 7 biologically, but more like 4/5 developmentally/emotionally. My son was tested recently and I was told he thinks like a 2 1/2 year old, I knew this already but it still hit me hard having others tell me, and ds will be 6 in November. Now this year he has become daytime potty trained and is in kindergarten for an hour a day for specials. He is talking more but is also stimming more out in public and his obssesions are getting worse. Sometimes I wonder also if MR might be there, with my son it seems like progress is extremely slow at most of the time. I wonder also if he will be able to be totally intergrated also.My 2.5 year old is in many ways like a 2.5 year old. But with playing and speech she is at about 18 months. I too thought of the MR thing, but I just don't think so, only time will tell I guess. She is just starting to play with toys properly, today she walked her toy horse across the carpet making a horse sound and I almost cried. Yes, I too have wondered about my son. By the way he acts ex. playing with others, emotionally, his stims...he is at the level of a 4 yo and he is 6 1/2. Though it does take him longer to learn a new skill or to learn school type things, he does learn and retain the information. I feel for you, I know it is so hard to know the world will not be accepting of our children the way they are. We love them the way they are, but the world wants to change them, and that is heatbreaking It sounds like our kids are at about the same level there NYMommyof3. Brendon is at about a 2 and a half year old level and he's 5. I don't see him ever being mainstreamed, but miracles have happened. If he is mainstreamed it'll have to be with alot of support...and I mean ALOT. Kind of. While the girls aren't any developmental age across the board, they're a weird mix of ability and delay. Depending on the 'skill', they're probably ranging from about a toddler developmental level to around a six year old level. Their vocabulary, for example, is like a six year old childs while their ability to have a back and forth conversation is probably like a typical 3.5-4.0 year old. They can draw like a six year old, but their emotional control is like that of a 3 year old. Their non-verbal language is probably less than a typical two year old while their academic skills are slightly advanced. It's very strange. If they blend in with a typical class of peers it's because people aren't looking too closely. Superficially, they look well placed, but if you speak with a typical kid in their class and then them, there's a marked difference in their ability to discuss anything.Developmentally Delayed means just that -- DELAYED. How far our kids "catch up" remains to be seen an is totally individual. I'm not blowing hot air here -- some kids make huge leaps, some don't. My son, technically, has an average IQ. But, at nearly 17, his language is still that of a preschooler, at best. However, he can do tons of math and has nearly a photographic memory. The truth is, he FUNCTIONS as a mildly MR teenager does. Someone with an IQ in the high 50's or low 60's, I'd say, eventhough he tests on the LEiter and other nonverbal IQ tests in the low 90's. His functioning at the MR level is reflected (IMHO, accurately) in his ADAPTIVE score -- 62 on a recent Vineland II. The Adaptive scores are more indicative of how our kids function in life. Lots of kids with above average IQ's but with Spectrum disorders score in the borderline range in Adaptive tests, ie at or below 69. My friend's 16yo Asperger son has an IQ score of 120 and a Vineland of 71. That's not an unusual gap at all. What this means is that lots of kids on the Spectrum have processing issues that prevent them from actually USING their intelligence in practical ways in life. That is what often holds them back. We will never be able to make any of our kids BE anything they were not born to be. That's true of ALL kids. What our job is is to maximize what they CAN do using their strengths to shore up their weaknesses. Each child needs something different and it's usually the MOTHER who knows what that thing is. The schools are responsible for showing us whether our kids are making progress each year in areas of disability. If not, they must try something different to help them make that progress. Once the kids have interventions that are appropriate, where they go is up to them and the gifts God gave them. Assessing actual intellect really can't be done -- there is no blood test for it that can't be disputed. The clumsy tests that we have been able to create to approximate a reading on intellectual potential leave much to be desired. The best test I know to enable parents to look Autism in the face and try to deal with how it affects their particular child is the McDonald's Test. Take your child to McDonald's on a regular basis and see how he or she functions in the Play Place. That is where the rubber meets the road (or in some equally age appropriate "typical" venue). It's THERE that we moms get to see if our kids are actually progressing or not. The challenges of learning to read and do math are NOTHING compared to the challenges of functioning in the real world. The more we expose our kids to the real world, the more practice they get at trying to deal with it and the more practice we get in trying to help them. [QUOTE=tzoya]The best test I know to enable parents to look Autism in the face and try to deal with how it affects their particular child is the McDonald's Test. Take your child to McDonald's on a regular basis and see how he or she functions in the Play Place. That is where the rubber meets the road (or in some equally age appropriate "typical" venue). It's THERE that we moms get to see if our kids are actually progressing or not. The challenges of learning to read and do math are NOTHING compared to the challenges of functioning in the real world. The more we expose our kids to the real world, the more practice they get at trying to deal with it and the more practice we get in trying to help them.[/QUOTE]Great advice Tzoya. So true.  Wow that was great Tzoya. Very good advice. I do not know how things will turn out for my boys, I do hold out hope that one day they will catch up, don't know if its really realistic though, probably not. THe boys are 4.5, will be 5 in Feb, and in some ways their 2.4 sister is ahead of them. She has more complex sentences and conversations than they do. On the vineland in April they scored a 3. That was sobering. I do want to do another one though, they have made so much progress I would like to know if that gap has closed at all. For the once a month give parents a break I tell them they are on a 3 year old level. Some things are below 3 and one or two things are a little ahead, so I figure 3 is probably the median. Nikolas is hyperlexic and is ahead on the school type things, he tested as a 5 year old 6 months ago in that department, he can read complicated long words but he can't tell me his name, he can't use all those words in a practical way at all. I don't know if you have listened to the interview with Raun Kaufman under . tv books and news?? in this forum But I think you would benefit greatly from listening to an adult who was diagnosed with Autism as a child. And i think everyone here would get something out of this interview, just seeing a grown man , who's prognosis as a child was grim to say the least, become so successful through the efforts of his parents is just enlightening. I listened to it this morning and it was truely refreshing for me like having triplets. In same areas my ds is 7 in some he is about 3. I remember when his last teacher just rolled her eyes at me and said 'he is sooo immature'. Well - actually that is his diagnosis he is developmentally delayed, which is a fancy word for immature. And I agree with Tzoya that it is the adaptive skills that are the rub. And there his weak areas are becoming come glaring by the day.Sarah has many scattered skills and it's her expressive language that makes her seem so much younger. She can overcome just about anything she puts her mind too but socially she still is more of a bystander. She can read, write & do math..but to listen to her talk to people she is more like a 4 year old. Sometimes she sounds perfectly too at times...Once again Shelley, your dd sounds much like mine. I think my 5 1/2 year old socially looks 2 years behind. My 6 year old was tested on a verbal IQ test when he was 4 and scored 70. This was devastating to hear but I didn't have him tested by way of a non-verbal test b/c if he didn't do better I'd be positively crushed. The fact is he may be MR to a degree. He's smart in some ways--great memory, doing addition, sight word reading, writing--I mean he's behind typical first graders but he's a young 6 (born in June). He's not great in other ways--conversational skills are poor, he gets obsessed with things like car washes and diving boards and can stim on them for hours. He is very distractable and has sensory issues. I have faith he will improve with time, but I grapple with the fact he's not like everyone else. This makes me sad for him b/c he will have to struggle--life is hard enough w/o a disability. I want him to do the best he can with what he has and most of all BE HAPPY. Hi NYMommy! My Andrew is 5 1/2. There is no way I can see him in a regular Kindergarten class. He is in a regional program for autism now. Five boys, a teacher, and an assistant. His expressive language is a weakness, but he seems to understand alot. He is in the process of being tested for a program that bridges the gap between most restrictive and full inclusion. I cannot focus on the negative or the what ifs. I cannot listen to my Mom say he may only be able to be a grocery boy checkout assistant or stock shelves. He is only 5 1/2. It is too soon! If we limit our expectations, anticipation, dreams, hopes for the future, then I think we may be doing a disservice to our kids who may really be able to surprise us and everyone else. It will be okay. Blessings... Don't give up hope, yes you will have to reassess your dreams and expectations but what I found with my son Jesse is that he has soo many surprises in him. If I had listened to the Pediatrician when he was 2 I would have never dreamed that he would have the ability to talk and share his ideas, build elaborate ships with Lego's and defend a friend from a Bully. Here he is at 11 and totally shines. Yes, he is reading at the level of a upper 2nd grade beginning 3rd grade level and he will never be able to write without a Spellchecker..if he even cares to think to use one. He has soo many gifts it just took him some time to learn how to let us in to his world.IQ wise back when he was 5 didn't give us much hope with the Nuero Psych but I have learned its just a number on a scale and this is a child who still has time with lots of love and support...HE WILL SHINE. Don't give up...they will have moments that will make you realize that there is someone inside trying to reach out.  Hi, Your son is so young, it's hard to say how far he'll go. My son is a little older than your son, and since he was 5 until now, there are gains that have been made. Their development is delayed, not halted, and they will continue to grow and learn. My son gives me little surprises every day. Those are what give me hope. Will he be able to be mainstreamed? Well, not this year, and who knows if he ever will, but only time will tell. As long as we do our best to help, and give them lots of love and acceptance, that's what I think will help them strive more than anything. Take it one day at a time, since that's how it comes at us, anyway... Chin up!!  nakama what you all said! Mimomof3 my DS is very similar. 6 but immature as well, verbal and making progress , but slow progress. But I'll take almost anything so long as it is progress. and what Tzoya said, there is no way to tell how far these kids can go. I do find it helps to talk to adult ASd. They really help put things into perspective. My son has a non-autistic friend who, technically, is MR. His tested IQ is borderline and he does very poorly academically. But he's 17, has an afterschool job and a girlfriend and NO ONE in the outside world suspects his has MR, only his teachers. Because his intellectual disability shows up mainly in school work. He speaks fine, he picks up on social cues fine. He functions well in the outside world. I mention this because this young man is an example of someone with Mental Retardation. It simply does not affect his life beyond the fact that he can't go to college. He will be fully independent and will lead a normal life. My son has another friend, age 16, who has Asperger Syndrome. He has a tested IQ of 120 but an adaptive scpre of 71 -- two points above being eligible to be considered Developmentally Disabled as an adult. He is functioning well considering his social disabilities. But he has no girlfriend, he hasn't been able to hold a job and he is still VERY dependent on his mother. He WILL go to college, but whether or not he will function normally in life is still up to debate. We'll know when we get there. I put these two examples out there to show that MR is really a minor problem for many. It's the SOCIAL piece that's critical to actually functioning well in life. I know we all always wonder whether our kids have the actual brain power to learn what we're trying to teach them. But I haven't noticed that brain power is usually the problem. It's putting all they know TOGETHER and making it WORK for them that is the issue. The ONLY thing we parents can do is look at what our kids need and try to fill those needs. After all, if any of us were told FOR CERTAIN today that our kids ARE MR, how would that change what we do for them or what we dream for them? Maybe it would be a relief in some way, helping to explain their delays. But, as I said, I know kids who definitely have MR who are not as delayed as some ASD kids who don't. ASD is a puzzle, for sure. |
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