Musings of a Marfan Mom



Friday was a hard, hard day. The Menininho has been at his school for close to a year and a half. It seems impossible that he’s gone from this:
first day of preschool
to this:
last day of preschool
When we first observed several schools, I knew this was the one for M. I was desperate for him to be able to attend but I wasn’t sure there would be an opening in time for him. We prayed and prayed and then got the call that a spot had opened.

M has thrived there in every sense of the word. Every teacher there has been great, but his primary teacher was truly a godsend and the director of the program has been an invaluable advocate.

Learning that our firstborn had autism rocked our world. There was a lot we didn’t know – a lot we still don’t know – but our basic hopes for him never changed: that M would be happy, be loved, and be successful in whatever capacity that meant for him. Mark & I had to turn over some control to professionals because we didn’t know how to help our son. I was distrustful in the beginning, especially given the initial issues getting services.

I think perhaps only another autism parent can understand the pain of your child rejecting you over and over again. There was a time I felt that the Menininho did not love us. He didn’t want us around, didn’t differentiate us from any other person or object. It was a dark period for me. And then, slowly, two of M’s therapists reached him, and he reached back. I can’t describe the feelings of joy and peace watching my son emerge and bond with these two therapists. So much of what he has achieved – showing his love for us, singing songs, some pretend play – is a direct result of them. M asks for his main teacher many nights before going to bed and has proclaimed her to be his best friend on more than one occasion. In turn, she is genuinely happy to see him and has really put in the effort to figure out what makes him tick and help him improve, even if at times trying to change his behaviors has been vexing and difficult.

Every child should be so lucky as the Menininho to have therapists like this. As a parent, I could not hope for better. I not only felt comfortable leaving my son at school each day, but I looked forward to it, to seeing him that happy.

I cried all Friday morning, dreading the goodbyes. M kept insisting to his teacher that she was coming to Ohio with us. She made him the most beautiful scrapbook of his time at school, complete with notes from herself and the other teachers there, and we will always treasure that.

Right now there is a gaping hole in my heart. We have been blessed beyond measure with the best school, teacher, OTs, speech therapists, early interventionist, and PT a family could want and I am going to miss them so much. They have given us a gift we can never, ever repay: hope. Our son is a different boy than he was a year and a half ago. We could never have predicted the progress he has made. There is no cure for autism and there are still many things to work on, but M is already doing things we weren’t sure he’d ever do and with the foundation he has, who knows what he’ll go on to accomplish?

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  1. Oh Maya! I was so moved by this post!
    I am always glad to hear, that things are better than expeted!


  2. My heart breaks for him. I’m so glad he had that time at that school, and have nothing but good hopes his next school rocks.


  3. I love this post. Hoping the big move brings new blessings to ease your sadness.


  4. One of the hidden blessings in having special needs children is meeting some truly inspirational people. I too know the feeling of welcoming a stranger into my life to help my sons. It is initially hard to hand over that control to someone else, to admit someone else might know better what my child needs.
    But it is truly life-changing to see these people become part of the family, people whose job it is to help but who choose to love your child as much as a blood relative.
    Saying goodbye is incredibly hard, but goodbye isn’t forever. Because they will always remember your sons and when your paths cross again it’s like a family reunion, filled with tears and laughter for all you have gone through.
    I’ve already had such moments and my boys are barely 10 months old. I know you will too.
    And though it is hard to start all over again in a new place, I can guarantee you will find some amazing therapists there. It may take some time to find them, but there are new members of your family just waiting to meet your boys.


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