It's interesting how we all handle our kids challenges. We all want what's best for our kids. We push them. We fight for them. We won't give them what we know they want unless they specifically ask for it. Some of us know already that we are in for lifetime care as the physical and/or mental needs are so great. That our babies will always need a high level of care. For others, there still is the hope that they will have independent lives.
So you ask, J, just where are you going with this?? While in the grocery store recently I ran into a mom whose son is in Boy Wonder's class. She admired Sweet Baby Girl. We chatted for a bit. She then told me she was resigned to her son being a baby for the rest of her life. I had not much of a repsonse for that statement. I've met her son. He reminds me of Boy Wonder. The difference is her son is not getting all the after school therapy that Boy Wonder is getting. Her district won't pay for it and she can not afford it. The boys are not quite 5 and to hear her say she's resigned herself already saddens me. I wonder where her son would be if her school district would step up and do what's right and quite frankly APPROPRIATE.
I'm not resigned. Not just yet. There is still hope, possibilites. Maybe even a miracle or two. But resigned? Not even close!
the disparity of service to these kids is heartbreaking. no one should be resigned. certainly not at 4. kills me.
ReplyDeleteAs I wrote in my vacuum post, anything is possible! We shouldn't have to fight for our kids to receive services, but in some districts, for some services, you do what you have to. Or you move (says the one who couldn't pull it off!!) But anyway, I do hope the other mom keeps being the squeaky wheel. I was concerned when Nigel was five that he would be completely dependent as an adult, but I wasn't resigned. As parents, how could we not keep trying?
ReplyDeleteI really think she's overwhelmed. See, he's a twin and his twin brother is NT. I can't even imagine that situation. I try to gently (shut it, I am capable of tact when called for!) suggest what she should say to her district and gave her the number of our child advocate.
ReplyDeleteThey are coming to Boy Wonder's birthday party in a few weeks and I'm going to see if I can't get her to drink my Kool Aid. :-)
Seems like there are stages in the emotions of parenting a child with special needs. Hopefully, most of us push past discouragement and despair into determination to do what we can to equip our kids for life. Resignation? So sad.
ReplyDeletesad indeed that her son does not have access to the services he needs. an incredible therapist once told me that she is working intensively with a middle-aged man with autism... she still has great hopes and expectations for him. we keep fighting, keep working, keep tweaking and always, always keep hoping.
ReplyDeletei love that you described yourself as 'A sometimes good wife but mostly not so good.' i'm with you, girl! trying to be better. =)