I'm sorry you seem to be getting nowhere with the professionals who should be helping you. I agree there is reason for concern. At the same time, there are a lot of positives, like pretend play and imitation.
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While preparing for your next visit from EI and your next appointment with the developmental pediatrician, make even more observations. These checklists might help. If any issues have been resolved or developmental milestones met through sheer long-term hard work (for example, the way you worked on waving), make sure that the evaluator is aware of that.
http://www.childbrain.com/pddq6.shtml the ever popular childbrain quiz
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=128&a=2226 - CHAT diagnostic screening for 18 month olds.
www.cdc.gov/actearly - developmental milestones in all areas.
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The speech and eating issues might signal low oral muscle tone. Your speech therapist may not have specialized training in this area -- you might have to seek out a specialized speech-language pathologist.
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What state are you in? Other people in that state might have tips about dealing with EI. Otherwise, here's a national brochure that might be helpful:
http://www.nichcy.org/pubs/parent/pa2.pdf
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As far as what you can do other than PECS, a lot of people on this forum swear by the Floortime approach. Here's a basic description with a link to how to get started, in case you're interested:
http://autism.about.com/od/developmentaltreatments/a/floorti meplay.htm
Good luck with everything!
I forgot to mention that a hearing test should be done if it hasn't been done yet. The neurologist association recommends it in ALL cases of suspected developmental delay.Hearing test - "a formal audiologic assessment should include behavioral audiometric measures, assessment of middle ear function, and electrophysiologic procedures using experienced pediatric audiologists with current audiologic testing methods and technologies."
Hello there ~
I have a 23-month-old son, Collin, who I’m worried sick about at the moment. He’s been followed by a developmental pediatrician since he was 15 months old when I first started having concerns about his development, and he has been enrolled in speech therapy now since the beginning of June (about an hour once a week). We are getting no help from Early Intervention at all. We pay for the speech therapy out of pocket through a private provider, and all we get from EI is a coordinator coming out once a month to check up on things (which most of the time she cancels those appointments ten minutes before it’s time for her to come). Collin has not been diagnosed with anything by the developmental pediatrician, but his speech therapist has given us a tentative diagnosis of apraxia of speech (I think she came up with this diagnosis due to his speech delay, obviously, and also the fact that he cannot blow bubbles, a horn, or pucker his lips for kisses). However, reading all I have about autism, I do think he has some red flags, and I’m beginning to get panicked that he isn’t getting all the help he needs.
My concerns about my son are the fact that he has no words at all, not even mama or dada. He does not shake or nod his head for yes/no. His receptive language seems okay, as he definitely understands more than he can say, but I still am not sure if it’s completely age appropriate. We get more consistent responses out of him with familiar requests/words, though sometimes he can surprise me with what he understands.
He sometimes will not turn towards you if you call his name. If you repeatedly say his name, he gets visibly frustrated but still refuses to turn towards you. Other times, he turns and responds immediately. He sometimes will get frustrated easily if a toy isn't cooperating the way he wants it to and will throw or kick the toy, and today I actually seen him bite a toy out of sheer frustration.
He follows a point very well and does point to objects, but most often for requests. He does not usually point to show, except occasionally he will point to an object in a book when you ask him to. Also, when he’s pointing, he will only sometimes look at you. We tried to teach him to wave for months and thought he could not do it at all. However, we were in a store one day when a lady approached him and started talking to him, and he waved at her, but has only waved spontaneously at someone three or four times since. He still refuses to wave upon request. He does, however, always wave his hands if you ask him if he wants to go bye-bye.
Collin was a late walker (16 months) and had a very big issue with starting solids. He was on baby food for quite a while because he would gag and vomit with anything with texture in it. He is now much more open to tasting and eating new foods, although still will not try everything you put in front of him. He does have a wide variety of textures he will eat now, though.
Some positive behaviors are he brings us books, toys, and things he needs help with on a very regular basis. His play skills are very good, and he has some emergence of pretend play skills, as he will pretend to feed a doll, puts things on his head and ours as if they are hats, puts a spoon in a cup and stirs it and will then put the spoon in his mouth, and he loves to feed us and give us drinks out of his sippy cup. He imitates our actions sometimes and gets a kick out of faking a cough while he’s eating because he knows that immediately gets my attention. He is easily engaged in activities and interaction.
He’s very interested in people, and, if confronted with a stranger or someone who’s unfamiliar, he comes to us for reassurance, and then warms up to the new person after a while. He’s very interested in other kids but still is not playing or doing a lot of interacting with them yet.
He doesn’t have any unusual repetitive behaviors, except he rocks himself back and forth to sleep (though both his dad and I both did that, as well, as babies/toddlers). When he’s barefoot, he will often walk on his tip-toes, but it’s transient in that he will take a few steps on his toes and then back down to his feet again. He has no problems when his routine is interrupted at all. He also will sometimes bang his head against things if he’s upset, but he does it lightly so as to not really hurt himself.
He had his third appointment with the developmental doctor today, and she gave him a little mini-evaluation with some toys to see how he interacted. She said that, at this stage, he seems more ahead socially than he is in communication, although she does agree that he does have some social deficits but thinks that may be due to his language delay. She wants to wait another 3 months to see where he is then. If he stays the same or his communication takes off and the social deficits don’t clear up, she is going to do the ADOS. She said if he is autistic, it’s mild.
Sorry about the length of this, but my mind is very scattered right now and I really feel we are just getting nowhere. We’ve been involved in this process since he was 15 months old and we still aren’t seeing any improvements, and now we have to wait another 3 months. I want to make an appointment for a 2nd opinion, but pretty much know we wouldn't be able to get in there in 3 months time anyway.
I'm going to be starting PECS with him this week. Is there anything else I should be doing with him while we're in limbo? Do my son's symptoms warrant me to get really tough about this and start demanding more from EI (if we can even get it because I honestly have no idea what their purpose is at this point)? I feel like we're in a time crunch here if he does have autism to get him help at the earliest possible time and so much time has already been wasted.
Thanks for any insight anyone can provide to me right now, as I don't even know where to turn at this point, and I'm starting to feel desperate.
~ Sonja
I would TRY to get an ASD diagnoiss as that is what will open up a world of free therapy for you
Videorecord/make notes of things that concern you -
Ohterwise a bunk of moms are doing Floortime and RDI with their kids and you can always do a bunch of things without investing a lot of dollars
Sonja
Sending you a BIG hug - this must be tough - your son does appear to have some red flags but some real great strengths as well
we got the same run around when my son was 23 months - a lot of docs dont know what ASD Looks like and so they thought that just becasue he was very related to us and engaged with me - he could not possibly have ASD
we persisted and persisted and finally had a diagnosis at 27 months - of course I wish I knew the things I knoew now
Orexample instead of waiting around I would have gone to any psychologist from my insurance and just got the daignosis and used that to get services from EI instead of just hanging around for appointmennts
Sonja,
Your son has some great skills & a few red flags..nothing he cant overcome though without good therapy. Even if you dont have the diagnoses you can still start some ABA for him..our dd was a lot like yours..no repetitive things, language but receptive normal..toe walker..affectionate but very aloof and could appear deaf at times..she is now high functioning pdd-nos...we got her ABA and speech for 3 years and she is totally age appropriate now & above. While trying to get a full eval from dev. pediatrician I would read the book:
"Let me hear your voice" by Catherine Maurice..she inspired me to do ABA with my dd and she totally recovered her two kids from autism using this therapy. Try modeling everything and narrarating all you do for him verbally so he can pick up meaning:) Make lots of pics of all his activities, foods, and places..people he knows and make little photo albums for him or posters for him to point to..
Baby bumble bee dvd are a wonderful way to kick start speech! Sarah had severe expressive language and severe articulation...she totally overcame it:) Our kids make huge strides and can overcome many of the obstacles of autism with early intervention. This is a great board with plenty of valuable information to help you:)
Best of luck! Keep us posted!
EI in every state is different. However, IDEA 2004 now has guidelines that every state must follow. To read these guidelines, go to http://idea.ed.gov/static/partCNprm and click on WORD or PDF
Can you tell us why EI in your state has rejected your son? They must give him a full evaluation. By age 3, your state MUST have fully evaluated him for Part B (preschool and beyond) services, which means they have to have his evaluation started by 60 days before his 3rd birthday. Call your school district to find out how soon he can be evaluated through them.
Remember that doctors really work for us and our kids. Try to find one that will listen and respect you.Thank you, everyone, for your great replies.
Our EI coordinator came over today, and she did a review. She completed the Ages & Stages questionnaire for him, and his only deficits were in communication. She also did the M-CHAT, and on first glance he passed that (as only missing one, which was a critical item, for sure), but there were things on there that I marked as a positive or that yes he had that skill (i.e. pointing to requests, to show, etc.) that he DOES do, but it's the quality of it that I'm concerned about (the not looking at me when he does it), not to mention I don't think he does it as often as typical kids his age.
He was given an evaluation when he first entered the EI program at around 16 months old. A woman came out and gave him the Brigance eval. He passed as within normal limits on all categories, though he barely passed the speech. His coordinator will be setting up a second evaluation next week since he has made no improvements since that first eval. His coordinator explained to me that since he tested within normal limits on that first evaluation that he was categorized as "at-risk" instead of "early intervention." So I guess that's why he hasn't received any services. I've heard very poor things about EI in my county, and my experience with them hasn't been great either. I asked the developmental pediatrician yesterday if having an autism diagnosis would entitle him to more services through my county, and she said probably not.
So I have a little boy who even I'm very confused about. He seems to be very borderline. If he does come out of this with an autism diagnosis, I have no idea what our options are in terms of therapy if EI does not provide us with anything more, and that is causing me some panic.
Oh, and I have taken the childbrain quiz, and he scored an 82, which said may indicate mild PDD.
Ditto to what everyone else says. Our dd was first given dx's of speech