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9 years into this journey and it never seems to get easier

meghans30meghans30 member
in Special Needs
In the early stages of this journey of parenting a child with special needs, I felt we would just get him some speech therapy and he would be all caught up and off into the mainstream with his peers, leaving his diagnosis behind. Over the years, Trevor has gained several dx - SPD, Apraxia of speech (this has been questioned as he does not present with any expressive language issues at age 9), PDD (dx at age 7), ADHD and anxiety :) Wow, that is a lot! Lately,  have been struggling with the thought that he will most likely always need support in the school setting . I am thankful we moved to a district willing to give him the social and academic support Trevor needs; although navigating the laws and IEPs ad everything else really could be a full time job.  We also added outside social group and work hard at making connections with peers. It's really exhausting and I am left wondering if we are doing enough. 

How many of you are part of a special needs support group? I really feel like I need to be able to vent to others in a similar position.  How can I just learn to accept and move on and stop over thinking. I want to do whatever is needed, but also wonder if there is more we could be doing.



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Re: 9 years into this journey and it never seems to get easier

  • kcisthebombdotcomkcisthebombdotcom member
    edited March 2014
    I am! I'm actually a support group whore (haha)--I go to one specific to asd and then a general one for kids who have a wide variety of special needs. This group has also been an amazing resource as well. It really does help!
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  • meghans30meghans30 member
    Thanks Auntie.  I wrote this after receiving an email regarding Trevor's "immaturity." He is currently in a substantially separate program (12 students max) for 3-5 graders who need support in the area of social skills. He receives social skills , we currently have a BCBA working to collect data to create an appropriate behavioral plan, 1:1 reading and we also attend outside behavioral training / social skills group.  

    We are hitting a point when my youngest is beginning to pass Trevor in social skills. It is hard to watch, but Kayson also helps Trevor and the two are very close.

    We are also hitting a point academically where his abstract thinking deficits are showing.  This all pretty much requires constant communication between school and home. We are considering a pragmatics eval as he has not had a speech evaluation in several years. Our former school district was a NIGHTMARE to deal with and actually refused to service him at all.  I am thankful for out advocate who has worked closely with us since kindergarten.

    The past couple of weeks have been intense and I am exhausted!
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  • meghans30meghans30 member
    Yes, the note regarding immaturity really got to me as he is diagnosed as on the spectrum!! Of course he is immature compared to his peers!  To many, Trevor really appears to be a typical 9 yo. He is polite, social and sympathetic to others. All good things, but difficult at the same time. 
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  • meghans30meghans30 member
    And Trevor's 3 year evaluation will be completed next December.  We have basically re-written his IEP since transferring districts as our previous district refused ASD services as they told us, "Some kids just like to play alone on the playground...."  It was a nightmare.
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