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sad

lemen99lemen99 member
in Special Needs

Andrew had his first parent-teacher conference today. His teacher has all good things to say. He has mastered a lot of the skills on the sheet (covers kids up to 4 years old) and the rest were emerging. He is doing some skills not even listed, like how he can name all of the letters. He's made a lot of progress in the 5 months he has been at school. Goals were to continue working on social aspects as well as helping him learn to mimic (verbally, physically, any type of mimicking is super hard for him.) He is always well-behaved and follows the rules. All in all, we were pretty happy about it.

And now, I am emptying his backpack, and I'm reading the note from his speech therapist (at school) from today. (This is an ST, not his teacher.)

She writes a special note on it outlining 5 different behaviors that she thinks we need to bring up to Dr. E (developmental pedi) the next time we see him, which is in a week.

All of the bullet points are social/speech related. For example one of them is that she says it's very difficult to get his eye contact, and difficult to maintain it. Other examples are how his speech has improved drastically, however it's often not functional, is "echolalic" and "perseverates". He needs models and prompts to initiate play with peers and needs "cued" through the communication exchange with a peer.

Just when I think things seem to get better and think I am worrying too much, I'm reminded again of things that still just aren't right Sad I hate to say that I almost feel like I want some kind of diagnosis or answer at this point so I can just accept it and talk to other moms with similar concerns and move on. I don't know exactly what it would be, but I definitely feel that things aren't quite normal. I feel like everyone keeps bringing up concerns that point to something unknown and bigger.

I already know the developmental pedi is watching him for a possible mild CP diagnosis.  I wonder about a social disorder.

I feel fine most of the time and just know that Andrew is Andrew, he's happy, he's silly, he's overcome a lot, and he has some more to overcome. I think he just has the best personality - and he's friggin' adorable - I love being around him.

But then things like this happen and they really upset me. Things could be so much worse but I have to wonder why my body had to boot him out so early. I'm just tired of worrying and I feel bad that he has to go through it.

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Re: sad

  • realisticdreamsrealisticdreams member

    I can't speak in regards to an ASD diagnosis. I do happen to know a little something about mild CP although P's was diagnosed very young, they told us.that the average child will not be dx until after age 2, if it is mild.  

    I also am on the debbie downer boat today with Peyton's bladder results and feeling like my body failed her somehow.  

    So I just wanted to say, I get the sad part, and it sucks, and it's ok to feel sad for a little while.

    Andrew has made great strides, and i'm sure he will achieve anything he wants in life with you by his side.

     

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • lemen99lemen99 member

    That's what I thought, auntie.  Thanks for the feedback both of you.


    His appt is next week and I know he's already potentially diagnosing with mild CP and he is concerned about some social things we have mentioned, but will mention these knew bullet points as well.  I'm sure something (or multiple things) are not right. 

     

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  • kar5162kar5162 member

    Big hugs.  Andrew has already fought so much and acheived so many things.  It sounds like overall he's improved tremendously since he started school and he's still very young.  Ultimately a diagnosis of mild CP or mild autism or anything else doesn't really capture the child he is and the person he will become. 

    I've followed your story (as a lurcker) since I found the preemie board a few months after my son was born and have always been so impressed with Andrew's fighting power and how well you've dealt with all of the challenges you've faced with him.  He sounds like an amazing little boy who will continue to amaze his doctors and you.

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  • lemen99lemen99 member
    imagekar5162:

    Big hugs.  Andrew has already fought so much and acheived so many things.  It sounds like overall he's improved tremendously since he started school and he's still very young.  Ultimately a diagnosis of mild CP or mild autism or anything else doesn't really capture the child he is and the person he will become. 

    I've followed your story (as a lurcker) since I found the preemie board a few months after my son was born and have always been so impressed with Andrew's fighting power and how well you've dealt with all of the challenges you've faced with him.  He sounds like an amazing little boy who will continue to amaze his doctors and you.

    You're so sweet.  Thank you! :)

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