Early Intervention Evaluation was today - would appreciate input

[countryduck]

Well I am so glad we decided to go in to the CDSA for the evaluation today. I couldn't be more pleased with the two people we worked with. They were very friendly and very knowledgeable - we really couldn't have asked for anything more. We are awaiting their official report but I think the sum of it will be to refer us to an occupational therapist who will assess and address any sensory processing issues and/or motor skills. We will also receive a referral to a speech/language pathologist who will address his lack-of-speech skills. One of the evaluators was a speech/language pathologist who said she was quite certain he didn't have apraxia of speech. This is where I am not so sure. He has SO many of the signs. He doesn't talk except for labeling things or repeating things he has heard from us or on tv. He doesn't initiate conversation, he doesn't tell us his needs - he doesn't talk. What is does say (the copied things) are sometimes clear and sometimes sound like jibber-jabber. Oh yea and he can read words, knows all letters but can't say his ABCs.

The other thing I am not sure about is this... I went in with concerns about possible autism. We completed a CARS together and the score was 35 which fell into the mildly/moderately autistic range. They seemed to dismiss it more or less and said they thought he would greatly improve with the ST & OT. I am not so sure. I just 'back up' and look at the big picture of sensory issues + speech issues/delay/lack of + gastro issues + sleep issues + transitioning issues + tantrums + no desire to potty train + no real shared emotions and I just can't dismiss it so easily. Anyone have any input? Please???

[countryduck]

Wow I just realized that I didn't put any info about how old my son is or anything.  He is 34 months old.  I have read that a true speech delay will follow the same pattern of development but just some slower.  He isn't following any type of pattern.  He hasn't learned any new words.  He can imitate what we ask him to say just fine and he can spontaneously 'label' things like ball or bunny.  I just am not sure that this is just a speech 'delay'.  He has horrible tantrums when he can't communicate with us because the words won't come.  We model the appropriate response or phrase for him and he just can't say it...

[Lollybrat]

Hi. Your son sounds a lot like mine at that age.

I'm glad you had him evaluated and were happy with the process! It sounds like the EI staff was great. I think speech therapy and OT will probably help your son greatly. They have done wondersful things for mine.

In most places, the staff of Early Intervention are not qualifiee to either diagnose or rule out autism. That does not mean that the they are not wonderful people who do great work, just that they do not have the medical credentials to say one way or another.  Most EI agencies do not have PhD level psychologist or developmental pediatriacian on staff and those are the professionals to make the diagnosis or rule it out. I would suggest that you ask your child's doctor for a referral to a developmental ped for a full medical evaluation.

You wrote: " He doesn't talk except for labeling things or repeating things he has heard from us or on tv. He doesn't initiate conversation, he doesn't tell us his needs - he doesn't talk. What is does say (the copied things) are sometimes clear and sometimes sound like jibber-jabber. Oh yea and he can read words, knows all letters but can't say his ABCs."

This is exactly what my son was like at that age. A week after his 3rd birthday he was diagnosed with high-functioning autism, dyspraxia (apraxia), and hyperlexia. Hyperlexia is a language processing disorder characterized by early reading combined with difficulties using verbal language. It is a unique learning style and a very different way of learning language. Since your son is reading, you may want to look into this. My husband and I call Hyperlexia "the gift that came with the autism" and understanding how this affects my son's learning has given us a powerful teaching tool.

I need to run to a meeting now, but I will try to write more later!

[countryduck]

Originally Posted by Lollybrat 

Hi. Your son sounds a lot like mine at that age.

I'm glad you had him evaluated and were happy with the process! It sounds like the EI staff was great. I think speech therapy and OT will probably help your son greatly. They have done wondersful things for mine.

In most places, the staff of Early Intervention are not qualifiee to either diagnose or rule out autism. That does not mean that the they are not wonderful people who do great work, just that they do not have the medical credentials to say one way or another.  Most EI agencies do not have PhD level psychologist or developmental pediatriacian on staff and those are the professionals to make the diagnosis or rule it out. I would suggest that you ask your child's doctor for a referral to a developmental ped for a full medical evaluation.

You wrote: " He doesn't talk except for labeling things or repeating things he has heard from us or on tv. He doesn't initiate conversation, he doesn't tell us his needs - he doesn't talk. What is does say (the copied things) are sometimes clear and sometimes sound like jibber-jabber. Oh yea and he can read words, knows all letters but can't say his ABCs."

This is exactly what my son was like at that age. A week after his 3rd birthday he was diagnosed with high-functioning autism, dyspraxia (apraxia), and hyperlexia. Hyperlexia is a language processing disorder characterized by early reading combined with difficulties using verbal language. It is a unique learning style and a very different way of learning language. Since your son is reading, you may want to look into this. My husband and I call Hyperlexia "the gift that came with the autism" and understanding how this affects my son's learning has given us a powerful teaching tool.

I need to run to a meeting now, but I will try to write more later!

Thank you SO much for replying.  I really appreciate any input you have to offer.  I really don't think they understood my concerns completely.  I actually had suspected both apraxia & possibly hyperlexia as well.  I live in a rural area and our CDSA probably doesn't see many (if any) families dealing with these types of things.  I am looking forward to the ST & OT to help him out for sure!  I am just afraid of wasting away valuable time if this is/could be apraxia, ya know?  I want a qualified person to decide and, if needed, help us work with him using effective techniques.  How often does your son have OT & ST?

[Linda on the move]

I think that higher functioning kids on the spectrum are pretty hard to label at that age. My DD is without a doubt on the spectrum, but at 3, her eval said "autistic like behaviors."  She was later labeled PPD-NOS, and eventually Aspergers.

It sounds to me like part of their hesitation is because it's really hard to say what a child will be able to work through with appropriate therapy, and what is really just hard wired neurologically. As Lollybrat said, they most likely can't dx autism, and even if they could, they might want to wait and see.

Autism is a heavy label, and if there is ANY chance that a child isn't on the spectrum, no one wants to error and say the child IS on the spectrum.

I'm guessing you were hopping for more clarity after the visit, and that you don't feel like you got it. After having gone through several evals at different ages, I think they are like snap shots. Just like you wouldn't expect a photo to look exactly like your child or predict what they will look like in the future, an eval may not give the total picture or tell you what to expect later.

One of the things about raising a sn child that has been more difficult for me has been making peace with the unknown. She's 14 1/2, and I still don't know what she'll be like as an adult, or how independent she'll be able to be. Growing up, she's gone through phases were her sn seemed fairly profound, but she's also gone through phases where she seemed nearly normal. A year ago she was mostly unable to function, but she's doing fantastic right now and will be volunteering in our public library this summer.

Part of the being the parent of a sn child is making peace with the unknown.

[crunchy_mommy]

Originally Posted by Linda on the move 

Part of the being the parent of a sn child is making peace with the unknown.

I love this.

OP, I went through something similar this week. I guess I was hoping for a clear-cut diagnosis and we didn't get that... I won't get into all the details here (unless you're interested)... I was sooo impressed by the wonderful people who came to evaluate DS but I was frustrated that we weren't able to get something solid out of it. Maybe my little guy will grow out of his issues and maybe they aren't part of something larger... it's so hard to accept the uncertainty. We will be starting OT etc. so hopefully that will help. I hope the services help your DS as well... Did you feel like they fully understood what's going on with him? Did they 'get it', aside from not diagnosing it? Or did they seem focused on the wrong things or oblivious to his problems?

[Aegis]

Originally Posted by countryduck 

Well I am so glad we decided to go in to the CDSA for the evaluation today. I couldn't be more pleased with the two people we worked with. They were very friendly and very knowledgeable - we really couldn't have asked for anything more. We are awaiting their official report but I think the sum of it will be to refer us to an occupational therapist who will assess and address any sensory processing issues and/or motor skills. We will also receive a referral to a speech/language pathologist who will address his lack-of-speech skills. One of the evaluators was a speech/language pathologist who said she was quite certain he didn't have apraxia of speech. This is where I am not so sure. He has SO many of the signs. He doesn't talk except for labeling things or repeating things he has heard from us or on tv. He doesn't initiate conversation, he doesn't tell us his needs - he doesn't talk. What is does say (the copied things) are sometimes clear and sometimes sound like jibber-jabber. Oh yea and he can read words, knows all letters but can't say his ABCs.

The other thing I am not sure about is this... I went in with concerns about possible autism. We completed a CARS together and the score was 35 which fell into the mildly/moderately autistic range. They seemed to dismiss it more or less and said they thought he would greatly improve with the ST & OT. I am not so sure. I just 'back up' and look at the big picture of sensory issues + speech issues/delay/lack of + gastro issues + sleep issues + transitioning issues + tantrums + no desire to potty train + no real shared emotions and I just can't dismiss it so easily. Anyone have any input? Please???

My son wasn't quite 3 when he was evaluated.  He was echolalic and could not originate speech.  He did use jargon, which is that jibber-jabber you mentioned.  The good news was that he used his echolalia (repeating what he's heard verbatim) as a means to communicate.  Sometimes it was used randomly, but a good amount of the time, it was his means to express himself, even if it seemed out of context to someone unfamiliar with when he heard it the first time.  Despite lack of novel speech, he was adept with more "academic" skills.  I'm not sure if he would have known the ABC song because I refused to sing it to him, but he knew uppercase/lowercase/phonemes, shapes, numbers, and other labels.  Yet he couldn't say "I love you" and didn't really call us mommy or daddy.  I used to say he could not understand nonverbal communication at all, and someone could be in great pain and he wouldn't see it as anything noteworthy.  When he had his speech evaluation, the SLP told us he has a speech "deficit" and not a delay.  She also said that occupational therapy could help because he exhibited processing and motor planning issues.  Like he knew what he wanted to say/do, but couldn't figure out how to get out.  She described therapy as a way to help him build the roads in his brain to get his thoughts out, either verbally or physically.

He also had sensory issues: visual, sound, and texture.  His bowels weren't good.  They weren't formed the way I thought they should be and he wasn't regular.  I was concerned, but my MIL said that her sons bowels weren't good either, and that's just how some kids are.  This was my first child, so I didn't really know.  The potty thing was just not happening at all, and transitions weren't good, though not horrible.  The few things we had going for us were that his tantrums weren't that bad at all and he was a good sleeper.

That was where we were at the start of 2010.  It was in November that he did the ADOS and was diagnosed as high functioning autistic.

He started at our state's preschool for special needs kids in March, which he loves.  At the end of the summer, we removed gluten and casein from his diet (as well as artificial colors).  We saw changes in the first week, but it wasn't until 5 months off gluten and casein that he started eliminating the way I thought he should.  Coincidentally, that's when his speech took off.  (Coincidence though?  Hmm..)  We noticed a lot of sensory issues becoming more mild.  I used to have to take the blender to another room to use it.  I have since got a VitaMix (those babies get LOUD!) and he will flip the switch on and off for me.  We can vacuum while he is home now.  He will actually wear jeans, though occasionally I'll have to remove a tag from a shirt (though I'll do that for myself from time to time.  Some are really itchy!).  He talks, he socializes at school, he's communicating his emotions, and we're learning how incredibly observant and compassionate he is.  He is also using the toilet on a regular basis and only wears a pull-up at night.

He is in occupational therapy once a week, which has helped us identify and work with so many of his other obstacles.  He also is in speech therapy (once a week), which has helped him so much as well.  Every once in a while I'll hear him echo, but very seldom.  The jargon is gone.  He's learning how to use "I" "me" and "my" rather than speak in the third person.  He does use voices every so often, but we noticed them disappear when we took yeast gluten-free breads and sugar out of his diet. This past weekend he stayed with relatives and had both the bread (gf) and white sugar.  He returned home and was hand-flapping, using voices, and echoing a lot.  We're sure he has a problem with candida.  We're actually going to be going on the GAPS diet once school is out.
 

I'm not saying that this may work the same for you, but this is what happened for our family.  It's so heartbreaking and frustrating, especially when all you want to hear is your child tell you that he loves you or to even just look at you and call you Mommy.  Waiting for services can feel like an eternity.  If you don't mind a suggestion, I highly recommend dietary intervention since you mention he has gastro issues, which are no fun no matter what.  Perhaps helping that can help him in other ways as well. 

Lots of big hugs and strength to you and your son. 

[countryduck]

Originally Posted by Aegis 

My son wasn't quite 3 when he was evaluated.  He was echolalic and could not originate speech.  He did use jargon, which is that jibber-jabber you mentioned.  The good news was that he used his echolalia (repeating what he's heard verbatim) as a means to communicate.  Sometimes it was used randomly, but a good amount of the time, it was his means to express himself, even if it seemed out of context to someone unfamiliar with when he heard it the first time.  Despite lack of novel speech, he was adept with more "academic" skills.  I'm not sure if he would have known the ABC song because I refused to sing it to him, but he knew uppercase/lowercase/phonemes, shapes, numbers, and other labels.  Yet he couldn't say "I love you" and didn't really call us mommy or daddy.  I used to say he could not understand nonverbal communication at all, and someone could be in great pain and he wouldn't see it as anything noteworthy.  When he had his speech evaluation, the SLP told us he has a speech "deficit" and not a delay.  She also said that occupational therapy could help because he exhibited processing and motor planning issues.  Like he knew what he wanted to say/do, but couldn't figure out how to get out.  She described therapy as a way to help him build the roads in his brain to get his thoughts out, either verbally or physically.

He also had sensory issues: visual, sound, and texture.  His bowels weren't good.  They weren't formed the way I thought they should be and he wasn't regular.  I was concerned, but my MIL said that her sons bowels weren't good either, and that's just how some kids are.  This was my first child, so I didn't really know.  The potty thing was just not happening at all, and transitions weren't good, though not horrible.  The few things we had going for us were that his tantrums weren't that bad at all and he was a good sleeper.

That was where we were at the start of 2010.  It was in November that he did the ADOS and was diagnosed as high functioning autistic.

He started at our state's preschool for special needs kids in March, which he loves.  At the end of the summer, we removed gluten and casein from his diet (as well as artificial colors).  We saw changes in the first week, but it wasn't until 5 months off gluten and casein that he started eliminating the way I thought he should.  Coincidentally, that's when his speech took off.  (Coincidence though?  Hmm..)  We noticed a lot of sensory issues becoming more mild.  I used to have to take the blender to another room to use it.  I have since got a VitaMix (those babies get LOUD!) and he will flip the switch on and off for me.  We can vacuum while he is home now.  He will actually wear jeans, though occasionally I'll have to remove a tag from a shirt (though I'll do that for myself from time to time.  Some are really itchy!).  He talks, he socializes at school, he's communicating his emotions, and we're learning how incredibly observant and compassionate he is.  He is also using the toilet on a regular basis and only wears a pull-up at night.

He is in occupational therapy once a week, which has helped us identify and work with so many of his other obstacles.  He also is in speech therapy (once a week), which has helped him so much as well.  Every once in a while I'll hear him echo, but very seldom.  The jargon is gone.  He's learning how to use "I" "me" and "my" rather than speak in the third person.  He does use voices every so often, but we noticed them disappear when we took yeast gluten-free breads and sugar out of his diet. This past weekend he stayed with relatives and had both the bread (gf) and white sugar.  He returned home and was hand-flapping, using voices, and echoing a lot.  We're sure he has a problem with candida.  We're actually going to be going on the GAPS diet once school is out.
 

I'm not saying that this may work the same for you, but this is what happened for our family.  It's so heartbreaking and frustrating, especially when all you want to hear is your child tell you that he loves you or to even just look at you and call you Mommy.  Waiting for services can feel like an eternity.  If you don't mind a suggestion, I highly recommend dietary intervention since you mention he has gastro issues, which are no fun no matter what.  Perhaps helping that can help him in other ways as well. 

Lots of big hugs and strength to you and your son. 

Wow!  I can SO relate to your situation. 

Our son doesn't call me 'mama' - will NOT say it.  He uses 'dada' for both of us.  He also can't say 'I love you' - only making a *kiss* sound back to us.  He doesn't understand/doesn't seem to care if other people are hurt/sick/whatever.

As for dietary intervention, we have already been working on those things.  He has never had dairy products (our 5 yo son has dairy allergy).  I got some testing done through EnteroLab for a suspected gluten intolerance in myself.  Since that time (a few months back), we have been gluten, dairy, soy, egg, yeast free.  We also avoid artificial colors, flavors, msg, corn and I suspect a fructose intolerance as well.  I too am near certain we (myself & my children) have candida issues as well.  I really need to buckle down and eliminate the remaining sugars but it is SO hard when you have to eliminate so many other things already.

My son has never had a formed stool up until recently after eliminating all of those foods.  I can't use our food processor, mixer or grain mill anywhere near him or his siblings - they all freak out.  I know we have sensory issues too.

As bad as it sounds, I am happy to hear there are others who are experiencing the same things as us.  It can be so trying and difficult during the tough times.

Thank you, thank you, thank you for replying.  I am almost certain that my little guy will end up with a diagnosis of HFA - I guess I should just relax a little and try to let things progress as they will.

Oh yea.  I think my 5 yo may have HFA/Aspergers as well.  Many of the same issues with him (minus the not talking - he was delayed for sure but he does speak now).  We are also seeking evaluation for him.

[countryduck]

Originally Posted by crunchy_mommy 

Originally Posted by Linda on the move 

Part of the being the parent of a sn child is making peace with the unknown.

I love this.

OP, I went through something similar this week. I guess I was hoping for a clear-cut diagnosis and we didn't get that... I won't get into all the details here (unless you're interested)... I was sooo impressed by the wonderful people who came to evaluate DS but I was frustrated that we weren't able to get something solid out of it. Maybe my little guy will grow out of his issues and maybe they aren't part of something larger... it's so hard to accept the uncertainty. We will be starting OT etc. so hopefully that will help. I hope the services help your DS as well... Did you feel like they fully understood what's going on with him? Did they 'get it', aside from not diagnosing it? Or did they seem focused on the wrong things or oblivious to his problems?

I am interested in the details!!!  Feel free to share!!!! 

I feel like they listened to our concerns but I am not sure I was able to get everything across to them.  I DO think they focused too much on his ability to label things and repeat what they were saying.  I don't know that they truly understand that he won't talk about how he feels, what he wants/needs, he can't tell me that he doesn't want to wear that shirt or go to the zoo today.  He can only try and get frustrated and eventually throw a tantrum if I can't figure it out first.  I, too, wanted something more concrete but I guess that is just not the way EI works.  I look forward to the report and recommendations/referrals.  I am ready to get this started. 

[crunchy_mommy]

Originally Posted by countryduck 

I am interested in the details!!!  Feel free to share!!!! 

I feel like they listened to our concerns but I am not sure I was able to get everything across to them.  I DO think they focused too much on his ability to label things and repeat what they were saying.  I don't know that they truly understand that he won't talk about how he feels, what he wants/needs, he can't tell me that he doesn't want to wear that shirt or go to the zoo today.  He can only try and get frustrated and eventually throw a tantrum if I can't figure it out first.  I, too, wanted something more concrete but I guess that is just not the way EI works.  I look forward to the report and recommendations/referrals.  I am ready to get this started. 

This sounds a lot like what happened at DS's eval actually. He is very... smart. He knows a ton of things that I guess most kids his age don't know. So they were just completely blown away (laughing and testing him on the big-kid stuff just for fun) by the things he could do that I wonder whether they missed the things he has trouble with, or if they didn't have any experience with kids like him. But then the other side of me thinks, maybe I made all this up in my head, maybe I'm crazy, maybe he's just a normal kid with normal toddler problems. I go back & forth. He's very inconsistent & unpredictable so my thoughts about this are equally all over the map.

DS talks a lot and it all sounds like regular speech except that a large amount of it is repeating verbatim things he's heard before. This is NOT obvious if you talk to him just once or twice... on the plus side, he does seem to be able to express original thoughts -- well, I *think* he is, there have been some times I thought he came up with something on his own, only to discover later he heard it from someone else or read it in a book.

I would love to hear him say "I love you" spontaneously. He will sometimes say it with prompting, but never of his own accord, and in general he does not reciprocate with greetings, shows of affection, etc. But he's really teachable and we've finally taught him to hug, for ex., and responds well to prompting. I've had to give him very specific phrases to use with DH, and he's gotten good with that & is even able to globalize it, using it for other requests, although he always uses the same basic structure. I don't feel like any of these things are obvious unless you spend a long time with him on a regular basis. Generally he can pass for a very shy version of 'normal', which I guess is good & will serve him well in the future, but it's hard for me to see him not being able to fully participate in things I can tell he wants to be part of.

He didn't start sleeping or eating well until a little after he turned 2. It's funny that you all talk about formed bowels -- I can't say DS has ever had one, but it's not something I ever considered a concern. He has never had dairy and eats minimal gluten due to me being GF (though I still can't tell if he needs to be strictly GF himself). We don't do anything refined/artificial or overly processed.

He has a lot of trouble with transitions and unpredictable environments. He is often OK with adults around but when there are kids running every which way, he tends to really withdraw. He doesn't play like other kids do -- he is obsessed with mechanical things and has almost no interest in toys. He carries around and sleeps with a pair of sunglasses, spends a lot of time looking at lights and fans, things like that. He tends to keep a 2' radius around him at all times and would rather play alone (with random non-toy things) than with or near other kids.

He has a lot of sensory issues (especially to noise) but his responses depend on how things are going. During the EI eval, one of the therapists was trying to rile him up by doing things like carrying him like a football & flipping him upside down. She couldn't get a rise out of him -- of course not, because those are kinds of things I do to calm him down!!! I don't think she even realized that the things she was doing with him were likely the reason he was so calm & 'normal' during the eval, and I didn't think to mention it for some reason.

So basically what I got out of the eval was that he is far ahead verbally/cognitively and well within range or beyond with fine & gross motor skills. I knew that already. He was 'diagnosed' with mixed developmental delay. I am so grateful they took my thoughts & experiences into account -- I feel like many professionals just disregard the parents' opinions. They gave us some homework and their ideas are already helping a bit, which is awesome. So obviously it wasn't time wasted, by any stretch, and if things become more evident during the course of services, we can modify/add additional services if needed. It was just weird going into it expecting them to call it something like severe social/emotional delay or even HFA, and I felt really disconcerted when they settled on such a vague 'diagnosis' and treatment plan.

[Aegis]

Originally Posted by countryduck 

Wow!  I can SO relate to your situation. 

Our son doesn't call me 'mama' - will NOT say it.  He uses 'dada' for both of us.  He also can't say 'I love you' - only making a *kiss* sound back to us.  He doesn't understand/doesn't seem to care if other people are hurt/sick/whatever.

As for dietary intervention, we have already been working on those things.  He has never had dairy products (our 5 yo son has dairy allergy).  I got some testing done through EnteroLab for a suspected gluten intolerance in myself.  Since that time (a few months back), we have been gluten, dairy, soy, egg, yeast free.  We also avoid artificial colors, flavors, msg, corn and I suspect a fructose intolerance as well.  I too am near certain we (myself & my children) have candida issues as well.  I really need to buckle down and eliminate the remaining sugars but it is SO hard when you have to eliminate so many other things already.

My son has never had a formed stool up until recently after eliminating all of those foods.  I can't use our food processor, mixer or grain mill anywhere near him or his siblings - they all freak out.  I know we have sensory issues too.

As bad as it sounds, I am happy to hear there are others who are experiencing the same things as us.  It can be so trying and difficult during the tough times.

Thank you, thank you, thank you for replying.  I am almost certain that my little guy will end up with a diagnosis of HFA - I guess I should just relax a little and try to let things progress as they will.

Oh yea.  I think my 5 yo may have HFA/Aspergers as well.  Many of the same issues with him (minus the not talking - he was delayed for sure but he does speak now).  We are also seeking evaluation for him.

I totally understand the feeling of knowing others have gone through this!!  When all of your friends/family have normally developing kids, you can't help but feel isolated and doubtful.  Thank goodness for the internet because I know it was so helpful for me. Group hug!!

As far as the food goes, I've read that it can take 6+ months for the gluten to get out of a system (for my son it took 5), but I think candida is a little trickier.  Saying farewell to potatoes was rough (thank goodness for butternut squash!).  Starches appear in all sorts of gluten-free pre-made foods, so at least we're saving some money by not buying those anymore.  We're buying raw local honey as our sweetener, which has turned out to be quite nice.  We do eat eggs though... a lot of them.  I make my own coconut milk, which is a great milk substitute for us, and we use a lot of coconut oil as well as ghee.  I believe coconut oil and honey are supposed to be great at keeping yeast at bay.  It's tiresome sometimes coming up with foods to make, but Living Without Magazine is really helpful, if not the most depressingly-titled magazine ever.  They do use starches and grains (GF) though.

Because my son responded so well to the GFCF eating, I'm hopeful that he will do well with the GAPS Diet.  Another reason we're going to do the GAPS Diet is because I think DH (and I'm sure myself) would benefit greatly.  Since my MIL had said that her boys had GI issues, I can't help but think, "hey!  They have food intolerance!"  I've convinced DH to stick to a more traditional foods diet, and so far, HE is doing much better on it (less anxiety, better moods).  He's going through some stressful stuff at work, and I know if this was happening before these food changes, he would be a wreck.

One thing I forgot to mention was that each time my son was evaluated by a professional (and we met with many), they all told us the same thing:  "Your son is a bit of a mystery."  Hmm.  No one was willing to diagnose him, and while we weren't looking for a diagnosis so much as a green light to start therapies, it was still frustrating to hear "he has red flags for this, but he also does this which would eliminate him from that..."  What?  Our counselor was a little surprised when my son did land on the spectrum, but by the time he had his diagnosis, it didn't really matter.  His therapies were in full swing, and we were already doing all this stuff to help him along.  If anything, it made dealing with insurance much easier.

Just a side note, my friend recently had her son evaluated.  She was thinking he would have an Asperger's diagnosis, but after his evaluation, he didn't get that diagnosis.  They told her that Aspies don't have speech delays.  He ended up with a PDD-NOS diagnosis.

[countryduck]

Originally Posted by crunchy_mommy 

Originally Posted by countryduck 

I am interested in the details!!!  Feel free to share!!!! 

I feel like they listened to our concerns but I am not sure I was able to get everything across to them.  I DO think they focused too much on his ability to label things and repeat what they were saying.  I don't know that they truly understand that he won't talk about how he feels, what he wants/needs, he can't tell me that he doesn't want to wear that shirt or go to the zoo today.  He can only try and get frustrated and eventually throw a tantrum if I can't figure it out first.  I, too, wanted something more concrete but I guess that is just not the way EI works.  I look forward to the report and recommendations/referrals.  I am ready to get this started. 

This sounds a lot like what happened at DS's eval actually. He is very... smart. He knows a ton of things that I guess most kids his age don't know. So they were just completely blown away (laughing and testing him on the big-kid stuff just for fun) by the things he could do that I wonder whether they missed the things he has trouble with, or if they didn't have any experience with kids like him. But then the other side of me thinks, maybe I made all this up in my head, maybe I'm crazy, maybe he's just a normal kid with normal toddler problems. I go back & forth. He's very inconsistent & unpredictable so my thoughts about this are equally all over the map.

DS talks a lot and it all sounds like regular speech except that a large amount of it is repeating verbatim things he's heard before. This is NOT obvious if you talk to him just once or twice... on the plus side, he does seem to be able to express original thoughts -- well, I *think* he is, there have been some times I thought he came up with something on his own, only to discover later he heard it from someone else or read it in a book.

I would love to hear him say "I love you" spontaneously. He will sometimes say it with prompting, but never of his own accord, and in general he does not reciprocate with greetings, shows of affection, etc. But he's really teachable and we've finally taught him to hug, for ex., and responds well to prompting. I've had to give him very specific phrases to use with DH, and he's gotten good with that & is even able to globalize it, using it for other requests, although he always uses the same basic structure. I don't feel like any of these things are obvious unless you spend a long time with him on a regular basis. Generally he can pass for a very shy version of 'normal', which I guess is good & will serve him well in the future, but it's hard for me to see him not being able to fully participate in things I can tell he wants to be part of.

He didn't start sleeping or eating well until a little after he turned 2. It's funny that you all talk about formed bowels -- I can't say DS has ever had one, but it's not something I ever considered a concern. He has never had dairy and eats minimal gluten due to me being GF (though I still can't tell if he needs to be strictly GF himself). We don't do anything refined/artificial or overly processed.

He has a lot of trouble with transitions and unpredictable environments. He is often OK with adults around but when there are kids running every which way, he tends to really withdraw. He doesn't play like other kids do -- he is obsessed with mechanical things and has almost no interest in toys. He carries around and sleeps with a pair of sunglasses, spends a lot of time looking at lights and fans, things like that. He tends to keep a 2' radius around him at all times and would rather play alone (with random non-toy things) than with or near other kids.

He has a lot of sensory issues (especially to noise) but his responses depend on how things are going. During the EI eval, one of the therapists was trying to rile him up by doing things like carrying him like a football & flipping him upside down. She couldn't get a rise out of him -- of course not, because those are kinds of things I do to calm him down!!! I don't think she even realized that the things she was doing with him were likely the reason he was so calm & 'normal' during the eval, and I didn't think to mention it for some reason.

So basically what I got out of the eval was that he is far ahead verbally/cognitively and well within range or beyond with fine & gross motor skills. I knew that already. He was 'diagnosed' with mixed developmental delay. I am so grateful they took my thoughts & experiences into account -- I feel like many professionals just disregard the parents' opinions. They gave us some homework and their ideas are already helping a bit, which is awesome. So obviously it wasn't time wasted, by any stretch, and if things become more evident during the course of services, we can modify/add additional services if needed. It was just weird going into it expecting them to call it something like severe social/emotional delay or even HFA, and I felt really disconcerted when they settled on such a vague 'diagnosis' and treatment plan.

Isn't it funny how your child can come across SO different in the presence of others?  And also how we can't recall everything we know/want to say?

I too have been back & forth with 'is this just a variation of normal?' or 'is this really what it seems?'.   

Thank you for sharing that.  For some reason it helps to hear other people's experiences.

[crunchy_mommy]

Originally Posted by countryduck 

Isn't it funny how your child can come across SO different in the presence of others?  And also how we can't recall everything we know/want to say?

I too have been back & forth with 'is this just a variation of normal?' or 'is this really what it seems?'.   

Thank you for sharing that.  For some reason it helps to hear other people's experiences.

I'm glad it helps, thank you for sharing too!!

[Lollybrat]

Originally Posted by countryduck 

Thank you SO much for replying.  I really appreciate any input you have to offer.  I really don't think they understood my concerns completely.  I actually had suspected both apraxia & possibly hyperlexia as well.  I live in a rural area and our CDSA probably doesn't see many (if any) families dealing with these types of things.  I am looking forward to the ST & OT to help him out for sure!  I am just afraid of wasting away valuable time if this is/could be apraxia, ya know?  I want a qualified person to decide and, if needed, help us work with him using effective techniques.  How often does your son have OT & ST?

Sorry it's taken me so long to come back. Obviously I cannot tell you if your child has apraxia and/or hyperlexia. But I can share how that combination has affected my son's development.

My son's dyspraxia (apraxia) affects all areas: oral-motor, gross motor, and fine motor. Due to the oral motor difficulties, DS was unable to latch effectively and later had a really hard time transitioning to table foods. Teaching him tasks like to blow bubbles and to suck through a straw took a long time with intense sessions. He made a lot of sounds, but never did reduplicative babbling ("mamamama" or "babababa" for example).

Just after DS turned two, he started using his ABC blocks to spell words like emergency, helicopter, and motorcycle. When we were out in the community, DS could follow written directions like "use other door" and "keep off the grass". DS was still nonverbal at that point, but we and his therapists were working on teaching him to sign. At first, DS was not interested in signing, but once he learned the manual alphabet, his interest took off. He learned about 100 signs and could finger spell anything.

A few months before he turned 3, DS started talking. It was mostly echolalia and scripted speech. He spelled out a lot of words instead os saying them. For example, DS would stand in front of the fridge and yell "M-I-L-K". He called us "M-O-M" and "D-A-D-D-Y" (spelled out). We had to teach him to use words instead of strings of letters.

DS's reading ability was pretty amazing. It started as sight reading, but by the time he was 3 it was obvious that he had figured out phonics. We were even more surprized to realize that he could read cursive as printing. DS has a mild visual impairment, so his early reading really was extraordinary.

We took full advantage of DS's reading. We have used white boards, cue cards, and written notes to teach verbal language, as well as everything else. We use social stories to teach adaptive skills and social skills. When DS was 4, he got a children's dictionary as a gift. He quickly memorized it and would recite definitions as a way of initiating conversation. The dictionary included a very good explaination of parts of speech and we were able to use this to teach DS how words go together to make new sentences.

Pragmatic language (the social use of language) remains difficult for DS, even now at age 7. He still has a hard time with WH questions and does not ask questions to gain new information. He still uses a lot of scripted speech. But he has so many scripts that many people do not realize that he is reciting memorized lines. Also, he still has some articulation difficulties and it is hard for strangers to understand him at times. But he continues to work hard and make good progress.

Having teachers and therapists who understand both dyspraxia and hyperlexia has been key to helping his development. He gets ST and OT twice a week at school (one session group, one session individual). During school breaks we do private ST and OT once a week, when we can get it covered by insurance.