Quirky Toddler - Worried Mom (LONG)

[Green Vixen]

Hi everyone,

 

I am sorry to bother you all but I don't really know where to turn. I have a 2 1/2 year old son that I am concerned about. Nothing is obviously "wrong" but it is a combination of lots of things that make me wonder. We have an appointment with a Developmentalist at the end of April and my son is currently in the 0-3 Early Intervention for expressive and receptive speech. When he was first evaluated at 26 months his expressive language tested at 6-9 months, and 12-18 months receptive language delay. Everything else was age appropriate or higher.

 

My son and his twin sister were born at 37 weeks and didn't spend anytime in the NICU. Between ages 12-18 months he had 6 ear infections, but the audiologist said he has no hearing problems.

 

My son can say quite a few words clearly but won't use them to communicate what he needs. He can say milk, but if he wants milk to drink he grabs my hand points to a cup, and then leads me to the fridge and points at the milk. The other option is that he will stand by the fridge and scream and scream until someone figures out what he wants. There is a lot of screaming in our house. He also only uses maybe one or two signs but will sit and watch Signing Time and will do all the signs with the show. He just doesn't use them. He also can say Mama but has never called me Mama to my face.

 

He is really into textures/sensory input and likes to explore things with his mouth, yesterday he was licking the inside of a DVD case. Last summer we also found him eating dirt, grass, etc. He will also lick books especially if they have pictures of food in it, likes to play with food, and will walk around on legos:001_huh:.

 

He is extremely independent (bordering on control freak) to the point where he gets himself pretty worked up if he can't get his way or is unable to do it himself. Once that happens he can't calm himself down, except if we can distract him with the TV. It is just so different than my other kids. They don't get something they want, they act out, and then move on. My son can't move on, he can't get himself back in control. We walk on eggshells around him.

 

I have been scouring the internet trying to find out if this sounds like a spectrum disorder, sensory disorder, etc. Nothing seems to fit him very well. He is social, makes good eye contact and cuddles. He does not seem to get overly stimulated, or dislike change and does well playing with his peers.

 

I just don't know what to do. I am feeling very overwhelmed with helping my son and doing what is best for him.

 

Thanks for reading through this long post! I'm excited to get to know everyone and watch all of our children blossom!

 

Marisa

[razorbackmama]

I would suspect some sort of sensory problem as well as a central auditory problem. He's probably too young to test for CAPD, however. (This is different from "hearing.")

 

Have you ever read the book The Out-of-Sync Child? You might find it helpful.

[wapiti]

The ear infections might have resulted in an auditory processing issue, which is really not helpful when it comes to speech and language. Other than that, sensory processing issues (of which auditory processing is a subset) would be the primary issue that comes to mind from your post, but I can't say that I'd be terribly concerned. It's not always easy to separate what rises to the level of a disorder from mild sensitivities, from age-appropriate behavior, and from personality.

 

Keep in mind that there will be a whole lot less frustration when he can finally speak easily. Sometimes even when they finally are able to talk, the amount of energy and focus it takes to execute the speech is overwhelmed by the emotion of the moment, even if the emotion of the moment is as simple as "I really, really want that cookie!!" That is, sometimes their mind is working much, much faster than their mouth, and they can't spit it out. Thus the screaming. I have found this true even with my kids who did not have speech delays, especially at that age.

 

On the personality angle, one of my kids' teachers told me I'll be really glad one day that my kids are strong-willed. I'm still waiting :glare:

 

that's my two cents :)

[razorbackmama]

Be aware that the Developmentalist may very well decide he has some sort of autistic spectrum disorder before you even get there, and everything your ds says (or doesn't LOL) or does will be viewed through that lens. I don't want to discourage you from seeing the Developmentalist, but be very aware that that is what they are looking for, and it is possible for a child to be diagnosed with an autistic spectrum disorder when they do not actually have one.

 

OK so just to clarify...he's in speech therapy right now? How long? How is it going? What does his therapist say?

[mominbc]

The ear infections might have resulted in an auditory processing issue, which is really not helpful when it comes to speech and language. Other than that, sensory processing issues (of which auditory processing is a subset) would be the primary issue that comes to mind from your post, but I can't say that I'd be terribly concerned. It's not always easy to separate what rises to the level of a disorder from mild sensitivities, from age-appropriate behavior, and from personality.

 

Keep in mind that there will be a whole lot less frustration when he can finally speak easily. Sometimes even when they finally are able to talk, the amount of energy and focus it takes to execute the speech is overwhelmed by the emotion of the moment, even if the emotion of the moment is as simple as "I really, really want that cookie!!" That is, sometimes their mind is working much, much faster than their mouth, and they can't spit it out. Thus the screaming. I have found this true even with my kids who did not have speech delays, especially at that age.

 

On the personality angle, one of my kids' teachers told me I'll be really glad one day that my kids are strong-willed. I'm still waiting :glare:

 

that's my two cents :)

 

I would check his ears too, a friend's child displayed similiar characteristcs and it was discovered he had a LOT of fluid in his ear that greatly affected his hearing and speech. After tubes were inserted he began to talk and calmed down behaviourly. Hope you can find the answer... I know that not knowing is the hardest.:grouphug: My son has severe reflux (GERD) and had all of those symptoms (as well as other GERD symptoms from birth) because he was always in so much pain...once he was put on the right amount and combonation of GERD medications he became a new child. I totally understand the walking on eggshells..it was so hard to have company because he was so unpredictable. Keep digging for answers. :)

[Crimson Wife]

My 2nd and 3rd are/were late talkers. Speech therapy really does help. Now at 5 1/2, he's within the normal range (though he still has some odd vocabulary gaps that we're working on). We're hoping for similar results for the 25 mos. old who tested in January at 9 mos. expressive and 14 mos. receptive. She's a screamer, too :glare:

[gingersmom]

Be aware that the Developmentalist may very well decide he has some sort of autistic spectrum disorder before you even get there, and everything your ds says (or doesn't LOL) or does will be viewed through that lens. I don't want to discourage you from seeing the Developmentalist, but be very aware that that is what they are looking for, and it is possible for a child to be diagnosed with an autistic spectrum disorder when they do not actually have one.

 

 

 

:iagree:

 

If you can afford it I would get him into private speech therapy. I would also encourage you to go for an occupational therapy evaluation.

[EmilyinND]

This sounds very similar to my daughter. She started saying words at 10 months but wouldn't initiate conversations. She has some sensory issues. Mostly her issues are in expressive & receptive language. She went to an audiologist & although, because she was only 4, we couldn't do the entire testing for central auditory processing disorder, that is what he felt she had. Her hearing acuity was normal, but she can't filter out background noise among other things. She has been going to a speech pathologist ever since. She is 8 now & doing very well!!

[Critterfixer]

My son can say quite a few words clearly but won't use them to communicate what he needs. He can say milk, but if he wants milk to drink he grabs my hand points to a cup, and then leads me to the fridge and points at the milk. The other option is that he will stand by the fridge and scream and scream until someone figures out what he wants. There is a lot of screaming in our house. He also only uses maybe one or two signs but will sit and watch Signing Time and will do all the signs with the show. He just doesn't use them. He also can say Mama but has never called me Mama to my face.

 

He is really into textures/sensory input and likes to explore things with his mouth, yesterday he was licking the inside of a DVD case. Last summer we also found him eating dirt, grass, etc. He will also lick books especially if they have pictures of food in it, likes to play with food, and will walk around on legos:001_huh:.

 

That sounds a great deal like my DS2. He is also a twin, and like your twins he never spent time in the NICU. He did not have ear infections, but he did have a lazy eye that required surgery at 18 months. No problems and he's done great with that ever since. However, I knew he was very different from well before day one. At two he was diagnosed as autistic spectrum disorder, and I was told he would likely be considered high functioning. That said, I remember reading the list of words I was asked to evaluate (what words does your child know?) and thinking that half the words he used were not on that list! Additionally the testing procedure had some questions that I would not have expected him to have experience with, like candles on a birthday cake. To me, the testing would be suspect at an early age, and that could lead to wrong diagnosis. There is just so much brain development and organization still happening at such a young age.

 

But he did a lot of screaming when he was frustrated. Most of his frustration was centered around not being able to communicate, and some of it around things that he just couldn't stand--shoes come to mind.

 

Anyway, knowing what is wrong helps other people, it may not necessarily help you figure out how to help him! I was more or less told that "You can't help your son, leave that to us EXPERTS." How helpful.:glare:

 

It sounds like your son is really, really trying to get his point across, which makes me think he'll try hard and not give up trying, which is to his advantage. It also sounds like he is great at memorizing things, even if he doesn't know exactly what they mean. Is there any way you could connect these for him? Perhaps you could compose a list of pictures posted on the refrigerator, so that when he wants mild, he can point to the picture, and you can have him say after you, "Milk, please?"

 

The other thing I learned to do with my son, when he was really melting down on me, was to cover him with his blanket and leave him alone until he settled down somewhat.

[mominbc]

One thing that our speech therapist did suggest for our ds was to print out little pictures of things he would want...like things to drink, favorite foods, teddy, blanket, toys etc. and paste them to a piece of paper on the fridge for him to point to when he wants something.

[Ellie Snowshoe]

This sounds just like my five year old boy. He never pointed to much, but he'd drag me around and let me know what he wanted nonverbally or by signing. If your writing here, you must think this isn't the standard way toddlers communicate. I'd encourage you to trust your instincts that something is up and get him to a major medical center for a full work-up by a developmental pediatrician. I was very resentful of the people who couldn't see my toddler for the lovely little ball of quirks he was. He was happy and that's what mattered. But when he hit his second birthday with no two word phrases, I knew we were in trouble. I wish I'd been more aggressive with early intervention. There is a finite amount of time that brain and neuronal development is primed for language. Use every day of it you can, because when they're six and twelve and twenty, you're going to want to look back and think you did everything you could to help them negotiate the world they inhabit. We've been exceptionally pleased with Anna-Marie Wilems-Floet at Johns Hopkins Kennedy Krieger children's clinic. If you have the means, it's worth going to a major medical center off the bat. We floundered in our mid sized city for months with no good diagnosis or resources. Again, in retrospect we should have gone straight to KKI. Please feel free to private message me if you have questions you'd like to discuss further.

[Shifra]

I strongly suggest reading The Autism Book: What Every Parent Needs to Know About Early Detection, Treatment, Recovery, and Prevention by Robert Sears. He talks about this sequence--the child can talk but won't, the child goes to speech therapy for a long time but there is no improvement. He himself used to refer the parents/child to speech therapy, but really, all the speech therapist works on is speech. You need a more holistic evaluation. Going to the Developmental Pediatrician is vital!

 

I read once that parents are correct over 90% of the time in regard to concerns about their child. If you think that something is wrong, chances are you are correct. Don't let anyone brush you off or tell you to give it time if you feel so concerned. Go with your gut feelings; they're probably correct!

Edited March 17, 2011 by Shifra

[AmyinMD]

You've described my 3 yo son almost exactly except he does not have good eye contact. We just did a Psych work up and OT eval through the PS a route I regret taking. We've been waiting for 2.5 months and still haven't gotten any answers.

 

My ds does have a fair amount of words but just won't use them. If he wants things he gets them himself. For drinks he will get the jug out of the fridge and get his own cup and then bring me both. He does use the toilet to pee but he has never once asked to use it. He will bring me a new pull up immediately if he wets himself because I forgot to take him to the toilet.

 

My ds was in EI from 28 month to age 3 for receptive and expressive speech delay and we never saw much improvement from that. He is currently going to Special Ed Pre-K every afternoon for 2.5 hours. We have seen some small gains there but I know he needs more.

[wapiti]

Be aware that the Developmentalist may very well decide he has some sort of autistic spectrum disorder before you even get there, and everything your ds says (or doesn't LOL) or does will be viewed through that lens. I don't want to discourage you from seeing the Developmentalist, but be very aware that that is what they are looking for, and it is possible for a child to be diagnosed with an autistic spectrum disorder when they do not actually have one.

:iagree:

I'd be careful about this. With the crux of an autism diagnosis being a severe lack of emotional empathy (see, e.g., the Eides' "The Mislabeled Child"), I'd be wary of heading down that road for a child who in no way appears to have social issues. A speech delay plus possible sensory issues, without more, do not add up to a spectrum diagnosis. My three oldest children had speech delays, and sensory issues (especially at that age, right down to head-banging tantrums and lining up objects, etc.) and not one of them is on the spectrum.

 

I would, however, be on the lookout for LDs as the child grows toward school-age.

Edited March 17, 2011 by wapiti

[LittleIzumi]

The ear infections might have resulted in an auditory processing issue, which is really not helpful when it comes to speech and language. Other than that, sensory processing issues (of which auditory processing is a subset) would be the primary issue that comes to mind from your post, but I can't say that I'd be terribly concerned. It's not always easy to separate what rises to the level of a disorder from mild sensitivities, from age-appropriate behavior, and from personality.

 

Keep in mind that there will be a whole lot less frustration when he can finally speak easily. Sometimes even when they finally are able to talk, the amount of energy and focus it takes to execute the speech is overwhelmed by the emotion of the moment, even if the emotion of the moment is as simple as "I really, really want that cookie!!" That is, sometimes their mind is working much, much faster than their mouth, and they can't spit it out. Thus the screaming. I have found this true even with my kids who did not have speech delays, especially at that age.

 

On the personality angle, one of my kids' teachers told me I'll be really glad one day that my kids are strong-willed. I'm still waiting :glare:

 

that's my two cents :)

 

:iagree::iagree::iagree: Dd had a ton of issues that cleared up quickly when her auditory issues were addressed, esp receptive & expressive communication & also some sensory.

 

Also, does he just know the word "milk" itself or does he know it MEANS that drink in the fridge? Dd would occasionally mimic a sign or a short word for a while but it was clear she didn't know what it MEANT, just that it got a reaction from dh & I.

[razorbackmama]

:iagree:

I'd be careful about this. With the crux of an autism diagnosis being a severe lack of emotional empathy (see, e.g., the Eides' "The Mislabeled Child"), I'd be wary of heading down that road for a child who in no way appears to have social issues. A speech delay plus possible sensory issues, without more, do not add up to a spectrum diagnosis. My three oldest children had speech delays, and sensory issues (especially at that age, right down to head-banging tantrums and lining up objects, etc.) and not one of them is on the spectrum.

 

I would, however, be on the lookout for LDs as the child grows toward school-age.

 

 

YES YES TRIPLE YES. And another thing to be aware of is that if the child meets just a FEW characteristics of some autism spectrum disorder, she could end up with a PDD-NOS diagnosis even though it's REALLY only speech, sensory, etc. and not truly an autism spectrum disorder.

 

My 2nd child couldn't really talk at age 2 - had about 7 words I think. He could "say" his ABCs and rote "count" backwards from 7 (couldn't say the words, but we knew what he was saying), but he wouldn't point things out in his environment. He had a lot of echolalia. Poor eye contract. He was diagnosed with PDD-NOS at age 4. He got a SMIDGE (as in, maybe 2 months) of speech therapy and then didn't qualify for it anymore because he had progressed so much. He also started pointing things out in his environment because of Blue's Clues, of all things. (When he wanted to show us something, he'd say, "A clue a clue!" and then point it out.) Usborne's First Thousand Words was helpful, but we didn't look at it intensively or anything.

 

Eventually he literally grew out of every single behavior and now he is somewhat gifted. I recently learned that many times gifted children are diagnosed with autism when they are younger because the characteristics are very similar.

 

I say all this to say...just do a lot of research. If the lack of emotional empathy component is not present, I would not go to a developmental pediatrician because the current diagnostic criteria are so broad that a child with a bunch of different issues (but not a true autism spectrum disorder) would technically meet the criteria and receive that diagnosis. Gosh, my oldest son received it at age 13 simply because he has trouble understanding what people say to him. It's ridiculous.

 

(Now ask me how I TRULY feel LOL.)

[Crimson Wife]

He is social, makes good eye contact and cuddles. He...does well playing with his peers.

 

This really doesn't sound to me like an autistic kid.

 

I would strongly encourage you to read Thomas Sowell's The Einstein Syndrome: Bright Children Who Talk Late and see if any of the characteristics fit:

 

 

• analytical

• musical

• strong-willed and stubborn

• slow to toilet train

• loves puzzles, blocks, and Legos

• loving and affectionate but sometimes aloof

• concentrates on some tasks & ignores requests/directives to perform other tasks

• can work almost every tool and gadget in the house

• relatives who are tech geeks and/or musicians

 

My 2nd fit the classic Einstein Syndrome profile and he did grow out of his speech delay with the help of therapy.

[Splash]

Another thing to look at and see if it fits is developmental dyspraxia. This encompasses speech and motor skills/planning.

[Guest Cheryl in SoCal]

Be aware that the Developmentalist may very well decide he has some sort of autistic spectrum disorder before you even get there, and everything your ds says (or doesn't LOL) or does will be viewed through that lens. I don't want to discourage you from seeing the Developmentalist, but be very aware that that is what they are looking for, and it is possible for a child to be diagnosed with an autistic spectrum disorder when they do not actually have one.

 

OK so just to clarify...he's in speech therapy right now? How long? How is it going? What does his therapist say?

It will really depend on the developmentalist. The neuro developmentalist my ds sees does not label.

Edited March 18, 2011 by Cheryl in SoCal

[razorbackmama]

It will really depend on the developmentalist. The neuro developmentalist my ds sees does not label.

Ah...by Developmentalist I mean a Developmental Pediatrician. That is very different from a neurodevelopmentalist, and you're correct, they do not use any labels.

[Guest Cheryl in SoCal]

Ah...by Developmentalist I mean a Developmental Pediatrician. That is very different from a neurodevelopmentalist, and you're correct, they do not use any labels.

Ah, that definitely makes a difference. Thanks for clarifying:001_smile:

[Green Vixen]

I would suspect some sort of sensory problem as well as a central auditory problem. He's probably too young to test for CAPD, however. (This is different from "hearing.")

 

Have you ever read the book The Out-of-Sync Child? You might find it helpful.

 

Thank you for the book suggestion, I have it on hold at the library :001_smile:. I will look into CAPD, I haven't heard of this before.

 

Marisa

[Green Vixen]

The ear infections might have resulted in an auditory processing issue, which is really not helpful when it comes to speech and language. Other than that, sensory processing issues (of which auditory processing is a subset) would be the primary issue that comes to mind from your post, but I can't say that I'd be terribly concerned. It's not always easy to separate what rises to the level of a disorder from mild sensitivities, from age-appropriate behavior, and from personality.

 

Keep in mind that there will be a whole lot less frustration when he can finally speak easily. Sometimes even when they finally are able to talk, the amount of energy and focus it takes to execute the speech is overwhelmed by the emotion of the moment, even if the emotion of the moment is as simple as "I really, really want that cookie!!" That is, sometimes their mind is working much, much faster than their mouth, and they can't spit it out. Thus the screaming. I have found this true even with my kids who did not have speech delays, especially at that age.

 

On the personality angle, one of my kids' teachers told me I'll be really glad one day that my kids are strong-willed. I'm still waiting :glare:

 

that's my two cents :)

 

Thanks for the reply! I wonder sometimes how much of this is just his personality as well? He can be pretty intense sometimes :lol:, much more so than his siblings. Everyday he does seem to be making some progress so hopefully as you said once he can speak more things will calm down.

 

Marisa

[Green Vixen]

Be aware that the Developmentalist may very well decide he has some sort of autistic spectrum disorder before you even get there, and everything your ds says (or doesn't LOL) or does will be viewed through that lens. I don't want to discourage you from seeing the Developmentalist, but be very aware that that is what they are looking for, and it is possible for a child to be diagnosed with an autistic spectrum disorder when they do not actually have one.

 

OK so just to clarify...he's in speech therapy right now? How long? How is it going? What does his therapist say?

 

Thank you for the input! I had a feeling that is what they will be looking for, and is part of the reason I want to have as much information going into the appointment as possible. I want to be able to have an educated discussion with them, particularly if I disagree with their diagnosis.

 

Marisa

[Green Vixen]

OK so just to clarify...he's in speech therapy right now? How long? How is it going? What does his therapist say?

 

Sorry I forgot to answer this part of your question. Yes, he is in speech therapy through the 0-3 EI program. A therapist comes to the house once and week and works with my son and his twin sister. She doesn't think he has "spectrum" issues from her interaction with him.

 

Marisa

[Green Vixen]

I would check his ears too, a friend's child displayed similiar characteristcs and it was discovered he had a LOT of fluid in his ear that greatly affected his hearing and speech. After tubes were inserted he began to talk and calmed down behaviourly. Hope you can find the answer... I know that not knowing is the hardest.:grouphug: My son has severe reflux (GERD) and had all of those symptoms (as well as other GERD symptoms from birth) because he was always in so much pain...once he was put on the right amount and combonation of GERD medications he became a new child. I totally understand the walking on eggshells..it was so hard to have company because he was so unpredictable. Keep digging for answers. :)

 

Thank you for your reply! An Audiologist checked his hearing last summer and said his hearing was fine, but he did have 50% negative pressure in one ear. He had said it wouldn't effect his hearing but would cause pain if anything. He has only had one ear infection since then so hopefully he tubes have "matured". I may have him rechecked again though, just to be sure everything still looks good.

 

Marisa

[Green Vixen]

My 2nd and 3rd are/were late talkers. Speech therapy really does help. Now at 5 1/2, he's within the normal range (though he still has some odd vocabulary gaps that we're working on). We're hoping for similar results for the 25 mos. old who tested in January at 9 mos. expressive and 14 mos. receptive. She's a screamer, too :glare:

 

Sorry you have a screamer as well, it can be exhausting for Mom :tongue_smilie:! They, my son and twin sister, will continue to have 0-3 services until September. We will hopefully find out at the end of the summer if they can continue with the school district speech therapy after that. We live in a small community and the waiting list for private speech therapy is 1-2 years.

 

Marisa

[Green Vixen]

:iagree:

 

If you can afford it I would get him into private speech therapy. I would also encourage you to go for an occupational therapy evaluation.

 

Thanks for your reply! We live in a small community and the wait list for private speech therapy is 1-2 years :glare:. Hopefully he can qualify for the preschool program so we can continue his therapy. I am going to ask the Developmentalist about OT, we are military so the referral process is kind of strange.

 

Marisa

[Green Vixen]

This sounds very similar to my daughter. She started saying words at 10 months but wouldn't initiate conversations. She has some sensory issues. Mostly her issues are in expressive & receptive language. She went to an audiologist & although, because she was only 4, we couldn't do the entire testing for central auditory processing disorder, that is what he felt she had. Her hearing acuity was normal, but she can't filter out background noise among other things. She has been going to a speech pathologist ever since. She is 8 now & doing very well!!

 

That is wonderful she is doing so well now, it gives me hope my little ones will improve! I will definitely be asking about CAPD at our appointment in April. Thanks for the reply!

 

Marisa

[SEP]

I think 'quirky' is an appropriate word for this. I have five children and my last two are b/g twins, delivered at 37 weeks, w/ no nicu time either. my other 2 are 'normal' developmentally and my eldest is 'gifted' by technical standards, just to give you background.

 

at around 14 m i had my b twin evaluated at our peds b/c he wasn't developing like my other children in gross motor and exp/rec speech. she said he was at the level of a 10 m. and i agreed. i am kind of a child development nerd and read all sorts of books on the subject just for fun, even before i had kids. i wanted to make sure that i wasn't being blind to my sweet boy's needs.

 

she said that as long as the gap doesn't widen as they progress then things are okay. i could tell that she was fishing for autism with the questions that she asked b/c i had read several books for a friend years ago. i did not suspect autism, but i also wanted to see how he 'measured' up.

 

i'm glad that i did not follow up w/ any other appointments b/c he's progressing just fine. is he where my other children were? no. however, he understands most of what i ask and he talks more bit by bit. i see progress. he is a quiet child who wanders around a lot, but he's always listening, even if he doesn't seem like it.

 

however, he is difficult in many of the same ways you describe. there is a lot of screaming when he cannot communicate. he does not understand reasoning at all, yet. he is sensitive to sensory type stuff. however, my dad and father in law were both ocd. my husband has anxiety and my eldest daughter had several sensory issues that she has overcome/dealt with/keeps secret now that she's older.

 

my eldest is my most 'difficult' child b/c i never know what might send her into hysterical tears, clothing has to be a certain way, etc... but she's my brightest child.

 

you need to do what you feel is best, but be careful not to box him in at such a young age. if you are homeschooling then 'labels' for the sake of services is not nearly as important as when a child is in school.

 

one of the smartest kids i know didn't talk until he was 3. no exaggeration.

[Green Vixen]

That sounds a great deal like my DS2. He is also a twin, and like your twins he never spent time in the NICU. He did not have ear infections, but he did have a lazy eye that required surgery at 18 months. No problems and he's done great with that ever since. However, I knew he was very different from well before day one. At two he was diagnosed as autistic spectrum disorder, and I was told he would likely be considered high functioning. That said, I remember reading the list of words I was asked to evaluate (what words does your child know?) and thinking that half the words he used were not on that list! Additionally the testing procedure had some questions that I would not have expected him to have experience with, like candles on a birthday cake. To me, the testing would be suspect at an early age, and that could lead to wrong diagnosis. There is just so much brain development and organization still happening at such a young age.

 

But he did a lot of screaming when he was frustrated. Most of his frustration was centered around not being able to communicate, and some of it around things that he just couldn't stand--shoes come to mind.

 

Anyway, knowing what is wrong helps other people, it may not necessarily help you figure out how to help him! I was more or less told that "You can't help your son, leave that to us EXPERTS." How helpful.:glare:

 

It sounds like your son is really, really trying to get his point across, which makes me think he'll try hard and not give up trying, which is to his advantage. It also sounds like he is great at memorizing things, even if he doesn't know exactly what they mean. Is there any way you could connect these for him? Perhaps you could compose a list of pictures posted on the refrigerator, so that when he wants mild, he can point to the picture, and you can have him say after you, "Milk, please?"

 

The other thing I learned to do with my son, when he was really melting down on me, was to cover him with his blanket and leave him alone until he settled down somewhat.

 

That is funny you mentioned your son was "different" from day one. I also feel this way about my son as do many people that meet him. He never really seemed like a baby, more of an adult trapped in a baby's body :lol:. Very alert and wise for such a little guy.

 

We do have a picture board on the refrigerator, pantry and cuboards but he just points to all of the pictures and doesn't seem to associate the picture with the object. We have just started using PECs with him so we'll see if that helps.

 

Thanks for your comments!

 

Marisa

[Green Vixen]

One thing that our speech therapist did suggest for our ds was to print out little pictures of things he would want...like things to drink, favorite foods, teddy, blanket, toys etc. and paste them to a piece of paper on the fridge for him to point to when he wants something.

 

Thanks for your suggestion! We have actually tried this without much success. He just points to all of the words and doesn't associate the picture with the item. We are now trying PECs so hopefully that reinforcement will work.

 

Marisa

[Green Vixen]

This sounds just like my five year old boy. He never pointed to much, but he'd drag me around and let me know what he wanted nonverbally or by signing. If your writing here, you must think this isn't the standard way toddlers communicate. I'd encourage you to trust your instincts that something is up and get him to a major medical center for a full work-up by a developmental pediatrician. I was very resentful of the people who couldn't see my toddler for the lovely little ball of quirks he was. He was happy and that's what mattered. But when he hit his second birthday with no two word phrases, I knew we were in trouble. I wish I'd been more aggressive with early intervention. There is a finite amount of time that brain and neuronal development is primed for language. Use every day of it you can, because when they're six and twelve and twenty, you're going to want to look back and think you did everything you could to help them negotiate the world they inhabit. We've been exceptionally pleased with Anna-Marie Wilems-Floet at Johns Hopkins Kennedy Krieger children's clinic. If you have the means, it's worth going to a major medical center off the bat. We floundered in our mid sized city for months with no good diagnosis or resources. Again, in retrospect we should have gone straight to KKI. Please feel free to private message me if you have questions you'd like to discuss further.

 

Thank you for the recommendations! Unfortunately we are stationed in Alaska and there are very few resources here for any special needs of any kind :glare:. We are moving next year so I hope wherever we are stationed will be closer to adequate facilities.

 

If you don't mind my asking what was your son diagnosed with? I also feel that people don't see my quirky boy as being as special as I do. It doesn't help that he has an extremely outgoing, cuddly, pixie twin sister. People always pay attention to her and he gets left out quite a bit.:sad:.

 

Thanks again!

 

Marisa

[Green Vixen]

I strongly suggest reading The Autism Book: What Every Parent Needs to Know About Early Detection, Treatment, Recovery, and Prevention by Robert Sears. He talks about this sequence--the child can talk but won't, the child goes to speech therapy for a long time but there is no improvement. He himself used to refer the parents/child to speech therapy, but really, all the speech therapist works on is speech. You need a more holistic evaluation. Going to the Developmental Pediatrician is vital!

 

I read once that parents are correct over 90% of the time in regard to concerns about their child. If you think that something is wrong, chances are you are correct. Don't let anyone brush you off or tell you to give it time if you feel so concerned. Go with your gut feelings; they're probably correct!

 

Thank you for the book recommendation! I love Dr Sears and didn't realize he wrote an Autism book. My son's evaluation with the Developmentalist is at the end of April, so hopefully we'll have some answers.

 

Marisa

[Green Vixen]

You've described my 3 yo son almost exactly except he does not have good eye contact. We just did a Psych work up and OT eval through the PS a route I regret taking. We've been waiting for 2.5 months and still haven't gotten any answers.

 

My ds does have a fair amount of words but just won't use them. If he wants things he gets them himself. For drinks he will get the jug out of the fridge and get his own cup and then bring me both. He does use the toilet to pee but he has never once asked to use it. He will bring me a new pull up immediately if he wets himself because I forgot to take him to the toilet.

 

My ds was in EI from 28 month to age 3 for receptive and expressive speech delay and we never saw much improvement from that. He is currently going to Special Ed Pre-K every afternoon for 2.5 hours. We have seen some small gains there but I know he needs more.

 

Have you guys heard anything from the evaluation yet? I'll PM you :001_smile:.

 

Marisa

[Green Vixen]

:iagree:

I'd be careful about this. With the crux of an autism diagnosis being a severe lack of emotional empathy (see, e.g., the Eides' "The Mislabeled Child"), I'd be wary of heading down that road for a child who in no way appears to have social issues. A speech delay plus possible sensory issues, without more, do not add up to a spectrum diagnosis. My three oldest children had speech delays, and sensory issues (especially at that age, right down to head-banging tantrums and lining up objects, etc.) and not one of them is on the spectrum.

 

I would, however, be on the lookout for LDs as the child grows toward school-age.

 

I am worried about this also, that they will assume he is on the spectrum and attribute any behaviors he has to that diagnosis. I am familiar enough with the medical community to take whatever they say with a grain of salt :lol:. Thanks for letting me know to watch for possible LDs, I will do that!

 

Marisa

[Green Vixen]

:iagree::iagree::iagree: Dd had a ton of issues that cleared up quickly when her auditory issues were addressed, esp receptive & expressive communication & also some sensory.

 

Also, does he just know the word "milk" itself or does he know it MEANS that drink in the fridge? Dd would occasionally mimic a sign or a short word for a while but it was clear she didn't know what it MEANT, just that it got a reaction from dh & I.

 

Thanks for your reply! He has only had one ear infections since his appointment with the Audiologist last summer, so it seems like all of that should be cleared up. Though I don't know if all the infections slowed down his progress and he is just catching up now?

 

He seems to understand what a word means because he can point to it in a book, it is just using it while communicating his needs that he struggles with.

 

Marisa

[Green Vixen]

YES YES TRIPLE YES. And another thing to be aware of is that if the child meets just a FEW characteristics of some autism spectrum disorder, she could end up with a PDD-NOS diagnosis even though it's REALLY only speech, sensory, etc. and not truly an autism spectrum disorder.

 

My 2nd child couldn't really talk at age 2 - had about 7 words I think. He could "say" his ABCs and rote "count" backwards from 7 (couldn't say the words, but we knew what he was saying), but he wouldn't point things out in his environment. He had a lot of echolalia. Poor eye contract. He was diagnosed with PDD-NOS at age 4. He got a SMIDGE (as in, maybe 2 months) of speech therapy and then didn't qualify for it anymore because he had progressed so much. He also started pointing things out in his environment because of Blue's Clues, of all things. (When he wanted to show us something, he'd say, "A clue a clue!" and then point it out.) Usborne's First Thousand Words was helpful, but we didn't look at it intensively or anything.

 

Eventually he literally grew out of every single behavior and now he is somewhat gifted. I recently learned that many times gifted children are diagnosed with autism when they are younger because the characteristics are very similar.

 

I say all this to say...just do a lot of research. If the lack of emotional empathy component is not present, I would not go to a developmental pediatrician because the current diagnostic criteria are so broad that a child with a bunch of different issues (but not a true autism spectrum disorder) would technically meet the criteria and receive that diagnosis. Gosh, my oldest son received it at age 13 simply because he has trouble understanding what people say to him. It's ridiculous.

 

(Now ask me how I TRULY feel LOL.)

 

Thanks for sharing your experience with your kids! I am a worried they will label him with PPD-NOS or another spectrum disorder but we live in a community with few resources so the Developmentalist is one of our only choices. Plus we are military so they are the first step in getting referrals for any other therapies or specialists.

 

I do wonder sometimes if he is "gifted" in some ways. He reminds my whole family so much of my Dad who is a pharmasist AND a lawyer, and he is a little quirky too!

 

I hope he grows out of the behaviors and problems as he gets older like yours did. I just want to make sure if there is a problem, I am on top of it :001_smile:.

 

Marisa

[Green Vixen]

This really doesn't sound to me like an autistic kid.

 

I would strongly encourage you to read Thomas Sowell's The Einstein Syndrome: Bright Children Who Talk Late and see if any of the characteristics fit:

 

 

• analytical

• musical

• strong-willed and stubborn

• slow to toilet train

• loves puzzles, blocks, and Legos

• loving and affectionate but sometimes aloof

• concentrates on some tasks & ignores requests/directives to perform other tasks

• can work almost every tool and gadget in the house

• relatives who are tech geeks and/or musicians

My 2nd fit the classic Einstein Syndrome profile and he did grow out of his speech delay with the help of therapy.

 

Thanks for the recommendation! I have actually been very curious about this book and joined the latetalkers forum. As I was commenting on in another post, I do wonder if he is gifted. He just seems to look at the world from such a different perspective. Since he was a baby he has been so alert and seemed more like an adult than a baby. He reminds all of my family of my father who is also quirky and is a pharmasist and a lawyer!

 

I guess only time will tell with my little guy! One thing I love about homeschooling is that kids can be a little different and still thrive, do things at their own pace and be surrounded by people that believe in them!

 

Marisa

[Green Vixen]

Another thing to look at and see if it fits is developmental dyspraxia. This encompasses speech and motor skills/planning.

 

Thanks, I'll look into that!

 

Marisa

[Crimson Wife]

I will definitely be asking about CAPD at our appointment in April.

 

Just an FYI- CAPD cannot be accurately diagnosed until the child is at least 5, and often not until age 7.

[Green Vixen]

It will really depend on the developmentalist. The neuro developmentalist my ds sees does not label.

 

It is good to hear they don't all label!

 

Marisa

[Critterfixer]

I also feel that people don't see my quirky boy as being as special as I do. It doesn't help that he has an extremely outgoing, cuddly, pixie twin sister. People always pay attention to her and he gets left out quite a bit.:sad:.

 

This is so sad. I remember feeling the same way when my boy was noticed only for his "strangeness" and the unusual way he would pace around the edge of a fenced playground, oblivious to the kids playing in the center. Now he is more likely to just run and join in whatever game is being played with fearless abandon, but I often wonder what other people can't see in this little boy who knows the sound of snow and compares the relative softness of cats. It makes me wonder all over again why people put everything that is beautiful in a diagnostic box.

 

That is funny you mentioned your son was "different" from day one. I also feel this way about my son as do many people that meet him. He never really seemed like a baby, more of an adult trapped in a baby's body :lol:. Very alert and wise for such a little guy.

 

Before day one, really. He was so quiet that for four months nobody knew he was there. We noticed fairly quickly that he had a great interest in patterns of stripes and in things that moved in circles an waves. I have a neat picture of him sitting on the floor tracing the patterns that the sun made in front of him when he was about a year of age. The first toy truck he got he immediately turned over and proceeded to "work" on it, rotating every wheel with great care. He has expressed interest in being an engineer, and given his affinity for things that "go round" I can't wait to take him out to a wind farm!:)

[Green Vixen]

I think 'quirky' is an appropriate word for this. I have five children and my last two are b/g twins, delivered at 37 weeks, w/ no nicu time either. my other 2 are 'normal' developmentally and my eldest is 'gifted' by technical standards, just to give you background.

 

at around 14 m i had my b twin evaluated at our peds b/c he wasn't developing like my other children in gross motor and exp/rec speech. she said he was at the level of a 10 m. and i agreed. i am kind of a child development nerd and read all sorts of books on the subject just for fun, even before i had kids. i wanted to make sure that i wasn't being blind to my sweet boy's needs.

 

she said that as long as the gap doesn't widen as they progress then things are okay. i could tell that she was fishing for autism with the questions that she asked b/c i had read several books for a friend years ago. i did not suspect autism, but i also wanted to see how he 'measured' up.

 

i'm glad that i did not follow up w/ any other appointments b/c he's progressing just fine. is he where my other children were? no. however, he understands most of what i ask and he talks more bit by bit. i see progress. he is a quiet child who wanders around a lot, but he's always listening, even if he doesn't seem like it.

 

however, he is difficult in many of the same ways you describe. there is a lot of screaming when he cannot communicate. he does not understand reasoning at all, yet. he is sensitive to sensory type stuff. however, my dad and father in law were both ocd. my husband has anxiety and my eldest daughter had several sensory issues that she has overcome/dealt with/keeps secret now that she's older.

 

my eldest is my most 'difficult' child b/c i never know what might send her into hysterical tears, clothing has to be a certain way, etc... but she's my brightest child.

 

you need to do what you feel is best, but be careful not to box him in at such a young age. if you are homeschooling then 'labels' for the sake of services is not nearly as important as when a child is in school.

 

one of the smartest kids i know didn't talk until he was 3. no exaggeration.

 

I can't believe how many twins have speech issues, even though those that were not premature! Does your girl twin have any difficulties or just your son? My girl twin is also having some speech delays in expressive speech, she also had a lot of ear infections from 12-18 months so I think it may have had some effect on her speech.

 

I don't think my son has Autism, nor does his Speech Therapist or our Pediatrician. I just want to make sure nothing else is going on, but I am worried the Developmentalist will look at some of his issues as being on the spectrum. I was worried about potential labeling but as you said since I'm planning on homeschooling so the label would just be to acquire services.

 

Thanks for sharing your journey with me!

 

Marisa

[Green Vixen]

Hi Critterfixer,

 

I loved this quote:

 

but I often wonder what other people can't see in this little boy who knows the sound of snow and compares the relative softness of cats.

 

All children are special no matter what package they come in, it's too bad not everyone can see this! Luckily my son isn't obviously different, just not as social as his sister. It is hard to watch her get all of the attention though and my son just longingly looks from the sidelines. My family is very good about sharing the attention equally between my three kids, so this doesn't come up too often.

 

Take care and I look forward to sharing this journey with our special children!

 

Marisa

[SEP]

I can't believe how many twins have speech issues, even though those that were not premature! Does your girl twin have any difficulties or just your son? My girl twin is also having some speech delays in expressive speech, she also had a lot of ear infections from 12-18 months so I think it may have had some effect on her speech.

 

I don't think my son has Autism, nor does his Speech Therapist or our Pediatrician. I just want to make sure nothing else is going on, but I am worried the Developmentalist will look at some of his issues as being on the spectrum. I was worried about potential labeling but as you said since I'm planning on homeschooling so the label would just be to acquire services.

 

Thanks for sharing your journey with me!

 

Marisa

 

my daughter is ahead of him, but not where my other daugthers were at the same age.

 

I think twins are different than singletons.

[razorbackmama]

Also be aware that some people (though fortunately the number is shrinking) do not believe that CAPD even exists.:glare: My son's speech therapist informed me that ASHA doesn't recognize it. I told her, "Funny, I actually learned a lot about it on their website.":lol:

[MilkMaid]

Be aware that the Developmentalist may very well decide he has some sort of autistic spectrum disorder before you even get there, and everything your ds says (or doesn't LOL) or does will be viewed through that lens. I don't want to discourage you from seeing the Developmentalist, but be very aware that that is what they are looking for, and it is possible for a child to be diagnosed with an autistic spectrum disorder when they do not actually have one.

 

OK so just to clarify...he's in speech therapy right now? How long? How is it going? What does his therapist say?

 

I agree totally. Don't just take the Developmentalist word if the diagnosis is autism or something else that is a serious matter. Second opinion never hurt anyone!!!

[razorbackmama]

I agree totally. Don't just take the Developmentalist word if the diagnosis is autism or something else that is a serious matter. Second opinion never hurt anyone!!!

Case in point: my ds was diagnosed with PDD-NOS, some sort of sleep disorder, and mild anxiety. The PDD-NOS was based solely on his communication struggles - he has NO other symptoms.

 

He has since been diagnosed with CAPD...um gee...communication problems, anyone?

 

The anxiety was based on a questionnaire they had him fill out. He flat out told me that he didn't understand the questions on it. So of course he filled them out weird.

 

He also does NOT have a sleep disorder. The doctor and I discussed that he probably didn't sleep well the NIGHT BEFORE and then that colored his thinking (or again, he didn't understand the questions they were asking him). Yet the dr. diagnosed him with a sleep disorder anyway. (Any sleep disorder he has is because he won't go to bed.:lol: )

 

We there literally less than 10-15 minutes, and when I described ds, the dr. would reframe what I was seeing in PDD terms. "Is it that he can't control his impulses, or is it REALLY that he just DOESN'T CARE about what he does to others?" Etc.

 

If it weren't 6 months later, honestly I'd be filing a grievance and asking for my and my insurance's money back.:glare:

[Ellie Snowshoe]

Thank you for the recommendations! Unfortunately we are stationed in Alaska and there are very few resources here for any special needs of any kind :glare:. We are moving next year so I hope wherever we are stationed will be closer to adequate facilities.

 

If you don't mind my asking what was your son diagnosed with? I also feel that people don't see my quirky boy as being as special as I do. It doesn't help that he has an extremely outgoing, cuddly, pixie twin sister. People always pay attention to her and he gets left out quite a bit.:sad:.

 

Thanks again!

 

Marisa

 

Hi There,

 

Air Force, huh, if you ever get stationed in Spokane, let us know, I'll take you out for coffee. I just wrote this long thing and it got eaten by my computer, so I'll try again, if it get's reposted oh well.

 

His official diagnosis is static encephalopathy, but the consensus is he has autism. That took me a long time to accept. The word just has so much pathology, it sounds like it refers to something less than a whole, wonderful, child. It's just not the case. My team at KKI was very good at not labeling him at all. All they care about is identifying and correcting his functional difficulties. Little guy has problems acquiring and correctly using language. Engaging with other people appropriately. And a laundry list of minor issues from food aversions to poor fine motor and low muscle tone. But he's hilarious and sweet and the teachers pet.

 

I reject the notion that because he has empathy he doesn't have autism. Today in school a child was told to go to the reading nook for some alone time because he was having trouble playing nicely. My guy went over, put his hand on his back and said "I sorry you can't play . . ." The fact that he can't look at him when he said it, and his voice isn't modulated, is a tip off he has autism. Glancing eye contact is coming along, but that's it. But he's starting to imitate their play, and do more pretending at home. He's doing great. He get's emotional, but he has problems regulating his emotions correctly. Tonight, he watched the video for "Rainbabies" and it made him sad. Now if you asked him what it was about, he'd give you a blank stare, because he just can't tell you. He can't use language in context. We had to teach him to use the word "No" correctly when he was three, but he could sing the entire postman pat theme. It took us months of intense lessons (we did a play therapy with DTT and it worked GREAT for us) to get him to process two step directions "clap your hands then touch your nose" He'd start the second one and totally forget about the first. It was a lot of work, but he's getting there. And by "there" I mean learning the skills he'll need to negotiate his environment for the rest of his life. I'll never forget I was eating Ben and Jerry's cookie dough ice cream in front of his babysitter (who is a guy) and I did the stupid thing of looking at the calories and I said "holy moly, 270 calories, vanilla only has 200 . . ." and my sitter looked at me askance and said "Yeah, but you get cookie dough . . . that's totally worth it." Parenting a quirky kid is like eating cookie dough ice cream, it's a little tougher on you than you thought, but totally worth it.

 

We wish you the best. His little pixie sister motor mouth has to get to bed. I just want to reiterate that taking him to a place with comprehensive services was the best thing we ever did. If you have family in a major metro area you might think about asking them for help. And while we educate him at home, he goes to school to learn how to be part of a community. If he is anything like my boy, they need that more than anything. Good Luck

Edited March 29, 2011 by Ellie Snowshoe