Friday, August 30, 2013

Special Needs Parents are grieving

I went to a local support group that a teacher of special needs children started for us parents, and it has been good. The teacher just started a facebook page and set up a once a month meeting at the library for us, and it is what we needed. I would suggest that anyone start one with parents at your child's school if you don't have one. Meet at a coffee house, or library, or one another's houses. It is very necessary.

Special needs parents are grieving. The process is long and may never really end. I tend to bounce around the different stages of grief. There have been many months when I walk around with a smile on my face but I am dying on the inside. My tears just start to well up so quickly when talking about my son.

I remember so many times, just visiting the special needs programs with my eyes so misty. "I can't believe this is real", "I can't believe my son has to be here", were my thoughts. My son is not only disabled, he is severely, multiply disabled. That is the reality.

I would sit down in meetings with therapists, or school staff members and go through my sons history and just be trying so hard not to cry. I was just absolutely dying inside. It has gotten better over the years, now that he is four. I still get teary, but I can dry it up more quickly.

We are grieving the loss of a normal child, plain and simple. I am lucky that I get to have a normal daughter, as well as my special son. I have a separate pain for her, because she is constantly reminding me that I don't give her the attention she needs and desires. She says, " I wish I was disabled too, so you'd love me as much as you love Andy". It kills me. It truly rips me apart inside.

Despite all the hurt, Andy and Gabby truly love each other, and she is the light of his life. They were meant to be together, as he was meant to be with us.


  1. Hi Amy
    I have been following your blog for a about a month. I too have a son with developmental delay. Hang in there, it does get better every year. Michael is almost eight now and fully functional - walks; talks; feeds himself etc. We still have really hard days don't get me wrong. But somehow it passes.

    I know what you mean about grieving. When Michael was about 4 I went through something very similar. At the end of it all though is acceptance which will bring you some peace. I took up running- saved my mind from thinking so much and worrying myself sick. Good luck and take care.

  2. Hi Amy, I just came across your blog while looking up info on supplements for developemental delays. This particular entry about grieving has really touched me. My daughter is 8 years old and has been diagnosed with PDD-NOS (on the ASD spectrum) as well as ADHD and a global developmental delay, and a speech delay. We've been riding the special needs train for 6 years now. I absolutely adore my daughter (and my 2 "normal" sons), but I totally get what you mean about grieving. I have never been able to sit through an IEP meeting at her school without crying. I can't help her do homework without crying. I cry when I don't understand her speech or see her struggle. I'm crying right now typing this.

    But then she does or says something new and wonderful, like asking me to take her to Japan when she's big (?!), and I rejoice with the "normalness" of the thing she's done. And there it is, I'm relieved of the grief for a minute. So yes, it does pass. I'm not quite to the point of "acceptance" as Serendipity is, but I'm getting closer.

    I'm just so glad that there are other parents out there that "get it". We may not be able to fix our kids problems, but at least we can know that there is a kinship out here. Reading your post has motivated me to ask my daughter's teacher about forming a special needs parents group. We all need someone to talk to (and cry with). Thanks for this. XO