Think I'm parenting a kid with special needs, need some advice on next step

[fizgig]

Ok, I've posted periodically about my DS who is just about to turn 2 and I'm trying to figure out a few things:

1. How worried I should be?  How proactive do I need to be right now in terms of dx and therapies?

2. If I should be doing more, what should that be?

Background: DS has always been very spirited.  Really bad reflux as an infant, has never and still never sleeps very well (though he isn't night weaned which could be why he doesn't sleep more than a few hours at a time).  Our biggest concern is that he still isn't talking.  He babbles, has inflection, says about 5 "words" (for example, muhmuh = more milk, duh = door). 

As soon as I say speech delay people ask about autism and I'm just not sure how to respond.

He has a few sensory red flags - toe walking sometimes, a little hand flapping, not talking yet obviously.  BUT he has no other sensory issues, he is also very social.  He loves being around other kids, plays interactive games (peek-a-boo etc), he smiles and makes decent eye contact, responds appropriately to emotions (cries at the sad parts of movies, shows worry when I get hurt, etc), lots of hugs and cuddles, gazes into my eyes while nursing, etc.  But then again he is stubborn and screams like a wild banshee when his will is thwarted (no idea how much of this is being 2 and how much is a worry).  If he was talking I wouldn't be worried at all since he seems otherwise happy and social.  I mainly feel like this is a language issue (expressive and receptive) and not something more like ASD but I've lost confidence in my gut after the eval we got from a speech therapist a few weeks ago.  Now I'm moving back and forth between freaking out and thinking that he will be fine without tons of interventions.

We decided to start speech therapy about 4 weeks ago.  During the evaluation he wouldn't engage with the therapist, wouldn't follow commands I know he knows, clung to me, cried, etc.  To be honest I didn't like the therapist much and was very stressed about the process. I later found out he had an ear infection though I don't know if he did when the eval happened.  For whatever reason, he was miserable and the therapist seems to think I'm in denial and in her eval she mentioned sensory issues as part of the problem.  So I don't want to be a bad mom but I also don't want to over react.  The therapist basically said he is waaaaay behind in communication skills (she rated him at 12 months, a full year behind!).  I know he's behind but I never thought that far!  She suggested we get him to a developmental ped for a dx so we could get him in "other therapies like OT" so now I wonder about their desire to make money off me since we have pretty good insurance.

I know many of the mamas here have been through a lot of similar things and I would love advice!  Would you be getting your kid in for a dx?  Is 2 even old enough to really figure things out?  Should I be starting occupational therapy since he does have some sensory stuff happening?  Is there anything else you would be doing with your little one? Please help me figure out the next step!

[babygirlie]

My dd started Early intervention at about 17 months. No words, hand flapping, toe walking. She is now 21 months and all the evals are mostly done (still has another speech therapy eval coming up) and I think NOW we can start really working with her. My dd didn't start eye contact, eating nor walking until 16 months. I think I signed up around then since I was worried. She still hand flaps and toe walks when happy (if your child is always toe walking there could be a medical issue there) and still no words.

I think early intervention is until 3. It's free and you don't have to continue if you don't want to. They can come to your house and evalulate your child and tel you what they think.

While EI has called her autistic the hospital calls her pdd-nos due to her being so young. They also offer autism classes which I am in now and I must say I like it better than the home visits.

I don't think you have anything to lose by trying an eval. We also went to an autism children center for our medical dx and she will be re-evaluated in a year and tested for genetic issues if there are any.

My dd doesn't need much attention and I think it's too easy for me to walk away from her and forget she's even here. All the classes show me how to better interact with her and to get in there and play with her. She has never needed me for anything except to fill her bottle which she won't ask for.

[Peony]

EI gives my 21m old weekly speech therapy. He just barely missed qualifying for PT, he has low tone, but we are able to do 3 consults with a PT in the next few months which has been helpful. EI is free, if you have insurance then they do attempt to bill your insurance but if insurance won't pay then they don't charge you. EI also has very strict guidelines of you qualifies or not, usually it has to be a 25% deficit or greater. For my DS's case, because he could do motor skills even though the quality isn't great, they had to count them that he could do them, and therefore he didn't make the grade. More therapists are more willing to move numbers around some to make things work to qualify... 

Do you like your current speech therapist? She is the same one that did the eval? There does need to be a good connection between the child and therapist, if it isn't working, maybe contacting your coordinator to see if changing therapists is possible. I don't see anything to lose by having more evals. My DD1 has an SPD dx from one of the best SPD centers in the country and she didn't display many of the classic signs either. They were able to point out many other things that I did not attribute to SPD. She did go through extensive OT and does quite well with her SPD today, we no longer do OT now. 

[LynnS6]

I do think it's worth getting an eval, at least for sensory issues (severe reflux is a risk factor for those), and maybe from a developmental pediatrician as well. Your therapist wasn't very tactful, but he does have a considerable language delay. I'm assuming he's had his hearing checked by an audiologist. If he hasn't, I would definitely put that on the list. If he has hearing issues, that will definitely affect his language. If he is prone to ear infections, for example, he might need tubes to hear properly.

A couple of quick questions: If you're looking and pointing at something, can he follow your point to see what you're looking at? If you're looking at something, will he be able to figure out where/what you're looking at? When you're reading a book together, does your son point to things that interest him and then look at you to 'share' his interest? If he sees something when you're together (a dog, a fire truck, or whatever else interests him), will he point it out to you?

The skills I'm asking about here are part of skills called "joint attention". Children who don't have good joint attention skills for commenting on/sharing interest in things are at greater risk for autism. Children who do have good joint attention skills are at less of a risk. Note that there's a difference in skills between a child pointing to something because s/he wants it and a child pointing to something because s/he wants to share their interest in it. Pointing to something because you want is is a good sign, but children with autism will do this. So, it's not as predictive of difficulties later. Pointing to share (or not pointing to share) is more.

The other skills to think about are receptive language skills. Do you think he understands you when you talk? Does he respond to his name? If you say "Go get your shoes" can he do it? If he wasn't himself at the evaluation, he may not have demonstrated how much he could understand, and thus be categorized as further behind than he actually is. On the other hand, if he doesn't understand much of what you say, it does make language learning tougher.

However,  I just want to reassure you that is IS possible to have language delay without autism. It's also possible to have sensory issues without autism (I've got one of those). It's possible to have both and not have autism. So, I think you need to acknowledge that autism might be a possibility, but I don't think you need to assume right now that he has autism.

Finally, I just want to say that I view a diagnosis as a way of learning to help my child be all he can be. It doesn't change who he is, but it might help me figure out how he might learn better, what makes him comfortable/uncomfortable and what makes his life fun and interesting. Regardless of his diagnosis (or of none), he'll still be your sweet boy, don't forget that.

[melissa17s]

Originally Posted by LynnS6 

However,  I just want to reassure you that is IS possible to have language delay without autism. It's also possible to have sensory issues without autism (I've got one of those). It's possible to have both and not have autism. So, I think you need to acknowledge that autism might be a possibility, but I don't think you need to assume right now that he has autism.

Finally, I just want to say that I view a diagnosis as a way of learning to help my child be all he can be. It doesn't change who he is, but it might help me figure out how he might learn better, what makes him comfortable/uncomfortable and what makes his life fun and interesting. Regardless of his diagnosis (or of none), he'll still be your sweet boy, don't forget that.

I agree with LynnS6.  My ds had speech delays.  He did not really speak until 2.5 years.  When he finally did, sometimes things he said were very unclear.  We had him tested by a speech therapist through school when he was 4 and they said he was in the range of normal; I guess I naively figured there was a big range of normal and his ped was not concerned... Turns out he was probably having seizures in the part of his brain that processes language, which appeared similar to daydreaming or staring.  He was otherwise very healthy kid. Now that he is older, we have been doing OT to help develop his eye hand coordination and muscle control that has also been effected by seizures.  

I think that it would good to get further evaluation; I do not think the therapist is concerned adding services to take advantage of your insurance.  Also, further evaluation could rule out the need for future services, if he does not need them.  It will also help answer your questions about what you need to do as a parent.  I would be proactive- read, research, listen to your options, and do what works for your family.  

[dbsam]

I agree with pp's. Language delays + sensory issues do not always equal autism.  I would have your son evaluated.

My daughter developed typically, including language, until twelve months.  She lost all speech from 12-18months.  At 18 months she started ST. At some point she also had PT, OT, and DT.(In my state it is not free but is much less expensive than private therapies.  The cost is based on income.)

She also had sensory issues, low tone, toe walking, no eye contact, etc.  At the time so many symptoms pointed to autism.  Her neurologists all said she wasn't autistic.  She does have epilepsy and her seizures affect the portion of her brain that control language.  She has also been diagnosed with OCD and anxiety issues. 

I know so many children who had/have speech delays and/or sensory issues.  I think it is very common.  EI can really help for many children.

[Linda on the move]

A lot of what you describe can be caused be chronic fluid in the ears. Kids can have fluid and not get infections and they can have so much fluid that a doctor can miss seeing it (like looking in a glass of water that is full, if you can't see the top, you cant tell if the glass is full or empty). Has this been ruled out?

His speech sounds similar to my dd's at that age. She ended up with tubes and speech therapy.

At such a young age, it can be difficult to figure out exactly what is going on, but through ei more therapies may be available

[sbgrace]

LynnS6 asked some great questions. The things that matter for autism are bigger than speech delay (and distinct...the things she mentioned might be issues in a spectrum kid with typical or advanced speech). They are bigger than sensory stuff too. A child can have sensory issues without autism or speech issues without autism (or both). It's the relational things that point to autism.

Responding to name, pointing things out to share, looking to you to figure out from your face if "it's ok" or not when unsure of something, looking to you when he's excited about something new (to you, to toy, to you, to toy, to you...), nonverbal use (shaking head yes/no, pointing, waving, etc.) being typical for age...these are the autism indicators. These are the things more important than hand flapping or lack of speech when a person is looking at autism spectrum stuff.

I'm sorry the therapist was such a bad experience.

[fizgig]

Thank you for all the feedback!  We just started with a new ST that I really like so far.  I guess at this point I'm just on the fence about a developmental ped and if we should start all that.  Those of you whose kids were having seizures - could you identify them?  That kind of thing is a real concern for me, I want to make sure this isn't medical but I have no reason to believe that it is.
 

Lynn, to answer your questions, yes he definitely has joint attention.  He follows my gaze, follows pointing, points to things and then looks at me to make sure I'm also looking.  If something is scary he looks at me to see how to react.  Mind you these are relatively new - I would say around 20 months.  But its getting more extensive each day.  These kinds of things are why I suspect non-ADS but then am at a loss as to what it is.

A couple of quick questions: If you're looking and pointing at something, can he follow your point to see what you're looking at? If you're looking at something, will he be able to figure out where/what you're looking at? When you're reading a book together, does your son point to things that interest him and then look at you to 'share' his interest? If he sees something when you're together (a dog, a fire truck, or whatever else interests him), will he point it out to you?

[melissa17s]

Originally Posted by fizgig 

Thank you for all the feedback!  We just started with a new ST that I really like so far.  I guess at this point I'm just on the fence about a developmental ped and if we should start all that.  Those of you whose kids were having seizures - could you identify them?  That kind of thing is a real concern for me, I want to make sure this isn't medical but I have no reason to believe that it is.
 

I am glad you like your new ST, and you might consider asking them, if they feel you need the tests recommended by the original ST.  To test for epilepsy, you need an eeg, which reads the brain waves.  Also, usually a ct-scan and mri to rule out possibility of tumor/lesion causing seizures.  I did not realize my ds was having seizures because the were short and similar to daydreaming, and he was not dx until this past summer at age 9.  However, the dr. felt he has had epilepsy since he was young and that the speech delay was likely related based on the origin of his seizures being in the language center of his brain.  Not all seizures effect that part of the brain- I think it may be chance that dbsam's dd and my ds have very similar characteristics.  I only brought it up to highlight that speech delay can be caused by issues besides autism.  If you have medical concerns, then you should definitely talk to your ped. about them.  

[khaoskat]

You would be amazed how much sleep deprivation affects a child, and gives you symptoms that mimic other disorders (autism; adhd; ODD).  I have had two children who have had sleep issues, and I can tell you that when my children have not had enough sleep, they can be very spirited....

And you should call your local Early Intervention Program, and get him started in that.  At his age, he should be saying more.  Our Ped always told us that by age 2 they should ave at least five two word phrases (like more milk)...

Ask your pediatrician for a referral for a sleep study and figure out, other than nursing, if there is a sleep issue.

[dbsam]

Originally Posted by fizgig 

Those of you whose kids were having seizures - could you identify them?  That kind of thing is a real concern for me, I want to make sure this isn't medical but I have no reason to believe that it is. 

Like Melissa17, I brought up the seizures just to say your son's symptoms can be many things. 

My daughter started having seizures within twenty-four hours of a round of vaccinations.  I did not document well, because the ped kept telling me they were not seizures and c/n/h been caused by the vaccines.  She was in the NICU after birth (preemie) and had no seizures.  After her vax, 4 or 6 month I cannot remember, I noticed her hands trembling slightly.  She also spaced out/stared but it was very subtle.  I brought it up repeatedly but the ped kept telling me it c/n/b seizures because she was developmentally on target (besides the speech loss) and they occurred on both sides of her body (and I wanted to believe him).  Just prior to age three, one of her therapists noticed what I had been noticing and also noticed her feet were also trembling.  She wrote a note to the doctor, I showed up at his office and demanded an order for an EEG that day. The short EEG showed many seizures.  The long-term EEG done later that week showed she was seizing night and day.  But they were barely noticeable except the very slight trembling, staring, confusion, etc. 

Anyway...I didn't mean to go on and on.  My daughter is doing really well now and to summarize an answer to your question (I know too late), I noticed some indication of seizures but no one else, including my husband, did. 

I'm glad you switched ST's.  Having a therapist that works well with your child and you is so important.  I was talking with my sister this afternoon...her son is 18 months and sounds so much like your son.  She recently had him evaluated by our state program, not a dev ped, and started him in ST.  Within a month she is noticing improvement.

My son also had a language delay, for him I think his brain was focusing on other things - like your son he had severe reflux and horrible sleep patterns.  He also has mild CP and I think sometimes when your body is working on one issue, for my son it was physical movement, something else gets put on hold.