Tuesday, November 5, 2013

Time for some changes

I hit another breaking point on Friday, and canceled all my son's physical therapy appointments. My son has gotten to know our therapy routine, and when its time to drive there, he cries the whole drive there. He knows where we're going, and he protests it. He often has to be calmed during the therapy visit, and it starts to feel like a waste of time to me.

I feel that my son can only handle 8-12 weeks of therapy at a time, and then he needs a break. This has also been noted in research articles that sometimes short bursts of therapy are more effective. My son seems as though he's had enough for a while, it's just a gut feeling I have.

On top of all of this, I have been feeling sad and depressed again about my son's lack of progress. I see other children in his class progressing, and they seemed to be able to do less than Andy in the beginning. This was true when he was in the 0-3 group as well. All the other kids would be advancing so much, but not my Andy.

I'm going to finally seek out a counselor now. Before my sadness completely overtakes me. My doctor gave me a recommendation, I just have to call them. I know what it feels like to be so far in the hole that it's hard to get out, and I'm halfway there. I can just be at the grocery store and start crying in the aisles because of my son. Or driving in the car, and start crying due to sadness about Andy. It's starting to affect my normal functioning. So, it's time.


  1. I totally understand your stress right now. Definitely, see that doctor. Get some help. Just having someone who you can talk to about these issues when you can't really tell your friends is a great help.

  2. How is your little boy doing? And how are y o u holding on?

    "Bouts of depression"? Been there, done that. I am mother to a beautiful 3,5-year old son who has hypoplasia of the corpus callosum. He was only 4 months old when life gave us another painful "gift" - intractable epilepsy, tonic-clonics, and ataxia.

    He doesn't speak, he doesn't walk, he can't stand on his own. He was tested for pretty much everything - Prader Willi, West, Angelman, deVivo, Ataxia Teleangiectasia... We still don't know what hit us. He was born from a perfectly normal pregnancy in a perfectly normal family. I guess it's just fate.

    He is difficult. Any efforts at physiotherapy are a nightmare, he gets stressed and this causes more seizures. Not that the physiotherapy changes much, he is proggressing incredibly slowly and at his own pace. It is a struggle but I love him, he is my life.

    I hope I am wrong, but when I look at more recent photos of your baby boy, I think I recognize the look in his eyes. My son had been having such episodes of crying, sleeplessness and iritability prior to his first tonic-clonic seizure.

    Again, I'm probably wrong, but watch for a hot and sweaty forehead, his facing getting red all of a sudden, his pupils dilating and contracting quickly, blank stares, night cries/terrors, changes in breathing pattern, especially during the night, strangle giggles for no reason, quiet whining sounds in his sleep. My son would also trace something with his eyes, something that was not there, or keep gazing obsessively at something in the room, a lamp, a window, God knows what. He can also freeze for a fraction of a second, his hands/arms/feet can be real cold to the touch. And he could cry inconsolably, for no apparent reason, and be restless for hours. It would get so bad I would take his for a walk in his stroller at 2-3am.

    Sorry for the rant. And thank you for your blog and for your courage.