holdingtomorrow

our journey of hope and healing through autism

A momentous day

Yesterday was a momentous day.

Yesterday, I sat before a panel of 8 professionals (including  a speech therapist, occupational therapist, psychologist, and physiotherapist).  For an hour they asked me questions about Hannah.  How do her challenges impact daily living?   How do they impact her relationships and interactions with peers?  How is your family’s participation in the community affected by Hannah’s autism? How does she sleep?

I mentioned improvements, but also spoke of the difficulties.  How the changes in Hannah’s nervous system make  dressing, tooth and hair brushing, eating, and sleeping painful processes.  That outside her immediate family, she lacks many of the skills necessary to connect with others.  That the consequences of her challenges follow us to every place we go- to church, the pool, the library, and entirely prevent us from going other places.

They asked specific questions, and I gave detailed answers .   By the end of the hour, their questions had lead me through a catalog of hard experiences.  By the end, I was struggling to hold back the tears.  You see, my main way of coping with the difficulties brought on by Hannah’s autism, is to focus on the progress.  On each new skill I see emerging, even if I only see it 10% of the time.  On the tremendous potential there is. One the hope that there is for healing autism.  But it is HARD.  Some days, it is beyond hard.  By the end of the appointment, the realization washed over me that I am so tired. So, so tired.  Tired from the strain of trying to be the ideal parent, always responding with what will gently nudge  Hannah’s development forward.  I am weary of attempting to hold my head high in public, when Hannah tantrums like a 2 year old, when I feel like sobbing because the fight for my child’s future is so relentless. For the hurt that I feel when well meaning acquaintances tell me to look on the bright side, because it means that they don’t see that I am working harder than I ever have before to be grateful for the progress and good things.

Late yesterday afternoon, one of the panel members called to let me know that Hannah has been approved for intensive therapy funding, what they call “Specialized Services”.  The Specialized Services funding is guaranteed for one year, and will cover speech, occupational and behavioral therapy in the mornings 5 days a week for the next year.  This is in addition to the PUF funding that Hannah has that covers her afternoon therapy that focuses on skills that need to be developed to function in the school system.  I’m overwhelmed with gratitude.  For the past year, I have been the mom, and daily therapist, and for the past 5 months, the special diet chef.  Yes, all moms take on these roles, but Hannah’s autism turns up the degree of intensity  so that some days it is like living in a furnace.  I am so grateful that for the next year, I get to have a whole team of people help Hannah progress.

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5 comments on “A momentous day

  1. Jenny
    October 19, 2012

    I am so glad!!!! That is wonderful news! Love you!!!!

    I don’t know if you are interested in reading fiction about autism, and I don’t know if it would be helpful or would hurt, but I just read a beautifully written book about a mother whose child had autism. It was called Love Anthony by Lisa Genova. I won’t be at all offended if you decide not to read it, but I really enjoyed it very much.

  2. Donna J. Dingwall
    November 9, 2012

    I can appreciate just how hard you have worked and will work. Our Father in Heaven smiles down upon you my dear sister. You are and will be truly blessed for all your efforts. xo

  3. Pingback: Then and Now- 1 years progress | holdingtomorrow

  4. Puneet
    December 19, 2014

    I follow Donna in that I can appreciate how difficult it must be. You are a tremendous parent. Hannah is so incredibly lucky to have you, I cannot reiterate that enough. With that in mind, please take good care of yourself. Your self-care is also important to Hannah’s progress.

    I am so glad you will be getting help from a team of professionals this year. It’s good to know that a group of experts will focus on Hannah’s development.

    • holdingtomorrow
      December 20, 2014

      Hi Puneet!
      It’s so good to hear from you! The post about the team was an old one- just to contrast where things are now. We haven’t been doing therapy this school year and seem to be doing just fine. 🙂 Let me know if you’re around and want to come for a visit. 🙂

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This entry was posted on October 11, 2012 by in feelings, hard things, things to celebrate, What's Up Lately and tagged , .
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