I’m starting to get that antsy nervous feeling for my special needs child. I know what is coming soon.
Our family enjoyed a wonderful holiday season together. Walt, my special needs child, has finally started feeling better and is getting back to his smiley, somewhat talkative self after struggling with pneumonia for months. As we have started to settle back into “real life” over the past couple of weeks, I realized that part of the reason the holidays were so wonderful was because we had a short break from all of Walt’s therapies.
Though I’ve gotten to know and truly love his therapists, I realized during his first physical therapy session after the holidays why I’d been dreading taking him to his appointments. I’d thought it was the hectic hassle of arranging childcare for my other kids, getting him there on time, and getting back in time to rush the girls to dance class. I actually dread therapy because of all the reminders of how far behind he is developmentally. Despite how positive and caring his therapists are, it’s hard to watch him struggle sometimes to stay awake for a session, let alone work on head and neck control and grasping things at the age of 14 months.
Walt sleep standing at physical therapy.
As Walt was starting to feel better, I was elated to see him smile again, cough much less, and be awake and engaged more and more. (For a while there, the poor boy was basically only sleeping and coughing.) I was so grateful to see him feeling better and more like his usual self again. I just enjoyed him and having him be a part of our family celebrations.
As we are returning to our usual schedule with multiple therapy appointments each week, I’m anxiously waiting for the phone call to schedule his next 6-month review with all of his therapists from the wonderful Missouri First Steps program. Aside from worrying about trying to somewhat clean and organize our messy, cluttered home for the meeting, I am dreading going through each of his quantifiable goals and talking about how he is not meeting them yet. I barely skimmed through the goals when they were originally mailed to me, after meeting with each therapist, so I had been shocked about how bad I felt at his last meeting when I heard so blatantly how he was not only not meeting milestones, but was not even meeting his goals to work toward his developmental milestones!
Sweet Walt snuggles on Christmas Eve at church.
I remember feeling very emotional at this last review when the therapists were working on goal setting for the next six months and asked me the loaded question “What do you want for Walt?” I remember fighting back tears, and trying not to blurt out that I wanted for my special needs child to not have any of these conditions and be normal. I wanted to say that I want him to walk and talk eventually, but I didn’t say it aloud because I was afraid that they already know these goals are too far out of reach for our son and I don’t want to lose my hope. I blabbered on a bit about gross motor skills, and we wrapped up the meeting.
Later as I contemplated the question again, I tearfully (of course!) realized that Walt is already achieving what I want for him, and what I want for his sisters as well. I want him to know that he is loved, and to be able to love us back. What more is there? I know that Walt knows how much we love him when we snuggle, sing, talk, and play together. I know that he loves us, especially as he is communicating a bit more (He definitely has a hungry cry, an in-pain cry, and an “I HATE prunes face!” These are all fairly new developments). He also calms when we snuggle and gives us his beautiful smiles.
I don’t know what I’m going to say at our next review meeting, and I am still dreading it, but it helps immensely to see the big picture, and how wonderful our son, a special needs child, is actually doing, no matter what health issues and setbacks he is facing.
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Tags: parents of special needs children
