Special Needs

First Post

Hi everyone,

I have lurked around on this board for some time and feel as if I have gotten some great information and resources from you all. 

I'm feeling a bit lost and very defeated lately. My son (age 28 months--only child) is definitely different. He has not yet received a diagnosis although he is receiving several types of therapy. He has not seen the pediatrician since his 2 year checkup, and a brief once-over by the pedi led him to believe that he was "OK," just a little behind developmentally. I entered him into the EI program myself when he was 18 months. He currently receives speech therapy (once/month) and special instruction (twice/month). Just recently he has begun OT (twice/month) for sensory issues. During the EI visits, the therapists basically just play with him and encourage him to speak (what I do with him on a day-to-day basis). We have only had 2 OT visits so far but they have not given me very much information. He has spent time touching things with different textures, digging around in buckets of rice and beans, and playing with toys (while throwing a few tantrums of course).

 I have seen a SLOW improvement with several things. He now has several words (maybe around 30?) and mimics funny sounds and can mimic intonation with several songs. There are maybe about 10 things that he can point to and say the name of (ex: apple). 

However, his behavior is APPALLING. I get nervous to take him out in public because he throws so many fits. He's big for his age and strong...it's hard for me to constrain him most of the time because I'm very small. He will do the whole "go limp" tactic and fall out on the floor. It looks like I don't have any control over my child. There are times when he is sweet and loving, and there are times when he can turn into a super-terror. He was in MDO one morning/week in the spring, has had the summer off, and will start back at two mornings/week in September. I am so nervous that his behavior is going to be ridiculous.

I know some of this is normal 2 year old stuff, but I am getting anxious over getting a diagnosis. He is delayed verbally obviously, and based on his OT eval he has some different developmental delays. I feel like he will never catch up and I find myself getting more and more down about it every day.

I feel as if I'm talking myself in circles here. I don't know what exactly I wanted to post about, but wanted to put myself out there to some people who know where I'm coming from and who can offer support. 

Should I be doing something more? Should I push for diagnosis? Who would be the one to finally tell me that he is on spectrum? I'm so scared for the future for my little boy.

Re: First Post

  • have you tried a developmental pediatrician?  They can point you in the right direction, and get more specific with a diagnosis if indicated.
  • We are dealing with this also, so I definitely understand what you are saying (even if you think you are typing in circles). Welcome! I'm fairly new as well, getting a PDD-NOS and dyspraxia diagnoses for our son.
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  • image-auntie-:

    You mention OT; is he being treated for SID/SPD or fine motor deficits or both? A sensory diet (touching textures) is appropriate for a kid with a SPD who is avoidant but a waste for other kids usually.

    Thanks for the welcome everybody. Auntie, he is receiving OT for sensory issues but they told me he has some developmental delays as well. We have only just started OT so we have not gotten very much information yet. They told me that he was delayed because he could not do things such as draw a circle and make a shape out of blocks (all he wants to do is stack the blocks). I was unaware that he was supposed to be able to do these things yet...ugh. They say that he is sensory avoidant in certain areas but I have not received a copy of his evaluation yet so I don't remember in which areas exactly. There are definitely some things he doesn't enjoy touching and he is a very picky eater. I can see some sensory seeking behaviors in him as well, though. 

    I have requested The Out of Sync Child from the library and I hope reading this might help me out with some of my questions.

    Can I just call for an appointment with a developmental pediatrician? I know they have long wait times. Is this something I should discuss with the EI team or his regular pediatrician?

    When are diagnoses usually given? I don't want to jump the gun on this too early, but I see younger and younger children receiving diagnoses. I thought closer to age 3 would be typical (he is 2 years 4 months), but I'm not sure.

    Thank all of you again.

  • Hi, and welcome.

    I have a young child with Autism. DS was diagnosed when he was almost 14 months which is very early and not common. However, due to his presentation (and my paranoia) we saw the developmental pedi this early.

    I called the dev. pedi that was recommended by a board in my state (not in my city though - had to travel to Dallas) and called him up. For me it was important that he took insurance (he did) and had the right credentials. He listened to my concerns on the phone and we scheduled a meeting. My son was evaluated and diagnosed.

    ECI in TX does not diagnose, and the services are not great. We also pay for it here (albeit on a sliding scale). Since the diagnosis we are receiving intensive therapy (25 hours a week right now).

    Diagnosis opens doors to servies, and for me, it helped me explain and excuse weird behavior. Now I know that it is not DS, it is his disease. No difference, but makes me feel better and be a bit more patient.

    Good luck, please post again if you have any questions!!!!

  • Hi! I just wanted to say hello and welcome as well.  Please trust that this period of time of un-knowns is the worst and it will get better with time.  I would also recommend to get an appt with Develop Pedi.  In my case, insurance covered only a small portion, but it's best to go with someone who really knows their stuf.  Unfortunately, many of the best ones will not take your insurance - that's the nature of the beast.  It seems like most of the specialists we see are not the best insurance-wise.  But, at least you trust they know what they're doing.  Research in your state who you should see, who has the best credentials and reputation - and schedule with them.  We paid $800 for our first appointment.

    Good luck and ask any questions!

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