I'm new. I'm freaking out about my 3 year old and need some help.

[ngolden817]

Hi all,

I am new to the boards. I'll give you a quick history. I have a 6 year old and 3 year old quadruplets. My quadruplets were born at 26 weeks gestation. Baby A (Mark) is mild-mod hearing impaired and has a paralyzed vocal cord. Tristan (baby C) is blind in the right eye and has limited peripheral vision in his left eye. Baby B (Andrew) and D (Lorelei) are relatively normal and don't have any major issues.

I'm worried about Tristan. Tristan was in the NICU for 5 months and came home with many health problems, most notably, his vision. Tristan was always extremely stubborn and hard to deal with. He had extreme feeding problems and food sensitivities. In fact, most of his diet is pediasure which was the alternative to a feeding tube because of his sensitivities. We had Tristan evaluated for EI services. He did really well on the IQ test and hit the ceiling on several portions of the test (especially the visual spatial processing section). He knows all his shapes and colors (even octagon/hexagon) and can count to 20. He understands quantities. Over the last month or so, he started becoming obsessed with letters and numbers. He knows a few site words and can sound out words. He wants to "read" everything. He knows all the letters/numbers upper and lowercase and all the sounds and can sound out words. He recently started learning site words as well.

He has very good fine motor skills. Even though he is low vision, he did not qualify for vision services because he had taught himself to compensate. The vision teachers said he was remarkable. He has perfect pitch when singing and memorizes portions of songs. He, however, has speech delays. He barely puts 2 words together. He can label lots of things and always asks "what's that." He has very good comprehension (he understands everything that is said to him) but only recently started talking a lot.  He also has behavioral issues at preschool. He refuses to do non-preferred activities. Instead, he gets very fixated on something he wants to do. Usual consequences dont' work for him.

At first, I blamed the speech issues on the prematurity. It has been suggested to me by several therapists/teachers that he was gifted so I blamed the lack of conformity on that. However, I came across some information on hyperlexia and it seems to fit. He does quite a bit of echolalia and seems to have that Gestalt learning pattern that is described. He is extremely affectionate but has a very strong attachment to me and seems to prefer to spend time with adults (though he does play with his siblings quite a bit).

All this time, I thought my child was gifted and now I am concerned he is autistic. It is sometimes hard to determine giftedness in micropreemies so I am looking for some advice I suppose. Is hyperlexia a true disorder or is it some "sign" of giftedness? If he is hyperlexic, does that mean he is not gifted?

[no5no5]

Welcome.  :)

IMO, hyperlexia is probably a true disorder, but it's definitely not the same as just early reading.  Kids who are hyperlexic have a whole host of other issues.  While it sounds like your DS shares some traits with hyperlexic kids, it's not clear at this point whether he is an early reader with other issues or whether he is hyperlexic (or both).  Have you had him evaluated for ASD? 

At 3, it's not easy to tell if a kid is gifted, especially for a 2E (twice exceptional, meaning both gifted and special needs) kid.  But if your DS hit a ceiling on an IQ test, that's a pretty strong indication that he is gifted.  Whether he is ASD as well is another issue.  There are lots of kids who are on the autism spectrum and who are also gifted, so that is a possibility. 

What I can say for sure is that it sounds like you have your hands (very, very) full.  I hope you find some answers. 

[Linda on the move]

Originally Posted by ngolden817 
All this time, I thought my child was gifted and now I am concerned he is autistic.

I have a child who is both gifted and on the autism spectrum. Her dx when she was younger was PDD-NOS and now it is Asperger's (she's 14). She wasn't able to comply with IQ testings when she was younger, so we didn't really know her IQ until very recently.

It can very difficult to sort out exactly what is going on with a child, esp. when they are so young. My advice would be to get a "complete neuro psychology evaluation" in hopes that you'll get some answers. My favorite book on the subject is Quirky Kids by Klass, which talks about some closely related dx's, types of specialist and evals, issues as kids get older, etc. It's a warm fuzzy book, and I've always found it reassuring.

Raising a twice exceptional child is challenging, but just so you know, my DD is currently doing GREAT. She goes to an alternative school and takes a combination of junior high and high school classes. She's happy. She's quirky, but she's still a great kid with great possibilities.
 

[DeeplyRooted]

My cousin was a micropreemie.  She has had vision problems throughout her life, and I recall her having speech problems when she was 3 or 4.  Though she was never diagnosed with it, those of us close to her -- and she herself -- believe that she has Asperger's.  

She is also gifted, by any reasonable definition.  She read very early, and her musical ability was stunning: perfect pitch, memorization of music pieces, ability to play the piano, and so on.  Who knows if she was hyperlexic; she probably met the criteria, in any case.  (My 4-year-old son meets the criteria for hyperlexia as well, and he's diagnosed with PDD-NOS.  But clearly gifted.)

All that sharing is just to say that you're not alone.  Plenty of people have walked this road before. 

In my mind, labels such as hyperlexia, ASD, speech delay, gifted, etc. are useful in two ways.  One is for the sake of services: by getting "official" labels, you can obtain services from the state and from your medical insurance company that you may not otherwise qualify for (or that you would have to pay for out-of-pocket).  In a twisted way, it's a damned shame that your child is compensating so well for his vision problems that he doesn't qualify!  EI isn't the end of the story, of course -- you might try again once he ages out of EI, and/or have a doctor vouch for him.  But at least you may be able to get help for his speech delay.  Don't be afraid of it or ashamed of it. :)  My kid didn't need speech therapy, but some of his friends have, and they benefitted quite a bit from the therapy they received through EI.

The other usefulness of labels is that they are, ideally, predictive.  If your child is confirmed to be on the autism spectrum -- and it may be a while before you can tell for sure -- it will help you understand what his future needs might be.  You can mentally prepare for that.  Likewise, if your child is gifted, in specific ways or globally, you'll have an idea what you can generally expect as he reaches school age.  That can help you choose an educational situation that matches him well.

If your child is picking up words, colors, shapes, etc. that fast, it sounds like you have a smart cookie!  He may be "gifted" and he may not, but the label doesn't change the fact that he learns fast and enjoys learning.  That's awesome.  Go with it and see where it takes him!  But it's often true that very smart children can compensate really well for things they can't do well (as your child already does), so be aware of that and try to tease apart his abilities from his deficits.

One of the explorations that helped me understand my child is a big ol' Google search on the term "asynchronous development."  You'll learn about kids who are behind in some areas, ahead in others, WAY ahead in yet others, and so on.  Gifted kids are often like this: different parts of them develop at different rates, and you'll see many different aspects and "ages" in one child.  (My kid reads so well, for example, that people sometimes tend to think he understands more than he really does, and that leads to complications sometimes.)  This is especially true for twice-exceptional children.  

[ngolden817]

Thanks for the speedy replies. Tristan currently gets speech/OT/special instruction from EI. I spoke with his speech therapist this morning. She said she doesn't feel he has ASD because he clearly understands humor and social cues. She said he is delayed in speech and social skills but is extremely advanced cognitively.  However she said he is making very good progress in the speech department.  She and the SI agree that though he has some features of hyperlexia they don't feel he is ASD. This whole thing is really frustrating to me because I want to help him but I don't know what to do. Would a psychological evaluation be helpful? Could this just be the asynchronous development of a gifted child? The delays are expected given he is low vision and an ex 26 week preemie.. It's the extremely advanced cognitive skills compared against the delays that they are all worried about. It's also so frustrating because he has 3 siblings born the same day to compare him to. 

As for me, my mother is blowing this all off saying that I had all the ASD symptoms and she said it was very hard to raise me and it turned out okay. I was labeled gifted in school and had very major problems with tantrums/transitions/sensory stuff/socialization. I think it is possible that I was an undiagnosed ASD kid. Tristan doesn't have the tantrums and obsession with rituals and routine nor does he do any sort of self-stimming. Again, he loves to socialize with adults just not other kids.

[Linda on the move]

Originally Posted by ngolden817 

She said she doesn't feel he has ASD because he clearly understands humor and social cues. .... Would a psychological evaluation be helpful?

....As for me, my mother is blowing this all off saying that I had all the ASD symptoms and she said it was very hard to raise me and it turned out okay.

She isn't qualified to dx this sort of thing, and even she were, she hasn't done a complete evaluation, which is based on more than observation. Your son most likely doesn't have "classic profound autism" but he could be a little on the spectrum. He'd need a complete eval to figure that out.

You might be a little on the spectrum,. it's hard to say. The school system has changed since we were all there and no accommodations are available for kids without a dx. Kids get less time to move, do more writing younger, have more home work and get it younger, etc. I think that some people who made it through 20 years ago with no dx and no IEP or 504 would need one now. And with good information and support, it's easier to raise a child with sn. It also means that they have a better chance of being happy and reaching their full potential. There are things like social skills classes, etc. I think the misery level is lessen for kids for get the help and support they need rather than having family vested in living in denial.

Since your son is currently getting services, would a label at this point change anything? Could he be in ABA therapy or something if he had a label? If not, getting an eval isn't something you need to do now. From what you describe about your son, it might be a good idea down the line.

And again, I highly recommend you read Quirky Kids, because what ever label he ends up with (or not) he sounds quirky!