I have been working on this TEFRA paperwork for the last couple of days and there are a few questions that just suck. I am so sick of answering stuff like this.
Describe how your child’s challenges affect your child and family.
I read it and then reread it. The box for the answer could hold 4 sentences tops. What can I put in this freaking box that will make it make sense. And who is going to be reading this? Does the person know what it’s like to raise a special needs child? Do I get emotional on their ass? Or logical? Seriously….how much detail can I give in 4 sentences. I moved on.
Describe your child’s developmental progress?
That one was easier. Cooper met his physical milestones on time up until jumping. Around age 2 the cognitive delays became extremely noticeable. And he has never spoken a word nor does he babble or make any sounds besides vowels. Oh, and the cherry on top…he exhibits sensory issues and extreme rigidity. His development is extremely delayed.
And lastly, do you have to watch your child more closely because of his physical or emotional needs.
It was a yes or no question. ::RAISES HAND and JUMPS UP AND DOWN:: Yup, we have to watch him more closely. Understatement of the century. Two nights ago Cooper pushed Sawyer off of the landing of our wooden play set. I went Matrix and dove and caught Sawyer with one hand. Thank God. He would have cracked his skull. To put it simply, Cooper needs constant supervision. So many parts of his understanding are like a 1-2 year old. And, he’s just downright naughty. 6 months ago he threw a D battery through our big screen TV. And wrecked it. Not a good night at our house.
Then there was a chart that asked how much help Cooper needs with different activities ranging from bathing to using the toilet to understanding others. That one just plain sucked. He needs help with all of it. And it’s all so much work.
And then I was back to the first question. How does this affect our family? Um, well…Autism has changed everything about everything. It absolutely controls our lives. We have lost relationships. Our work suffers. We drive to therapy constantly. Which isn’t working by the way. We are broke. The medical debt is crazy. It’s changed me as a person. It’s changed me as a wife and a mother to Sawyer. I worry about every single thing that one could worry about.
Like, how is he every going to go to the dentist? What if he gets lost? How will he take school pictures? What if he gets teased? What if he never talks? What if he is a 10 year old pooping in his diaper and sitting in the dirty throwing rocks? Who is going to take care of him after I die? What if I never have any grandchildren? Yes, these are real worries…that I had today…possibly in the last few hours. And what if I get an ulcer from all of this worrying?
How the F do I convey this in just a few words? I need them to know that we need this assistance to take some of the financial stress of us.
So, here is how I answered:
Cooper’s autism completely controls our family. Because of his sensory issues and his verbal delays we are completely isolated. He has therapy 3X per week and the financial burden and time commitment is huge. The stress is indescribable. He needs intensive therapy. And we need help.
That about sums it up. I wish I could send a picture of him so they could see how stinking cute and lovable he is. Maybe I’ll slip one in:-)