I laughed. I laughed so hard that I had tears running down my face. We are in such a pathetic state in our house right now due to summer "break" from school/services for our older son that life has just spiraled downward. Last night, hanging by a thread, my husband shared with me his disgust, and I melted into a puddle of laughter.
At the start of the "break", feeling not quite my best but optimistic, I faced the day with a willing smile and promised him, yes, I will take him where he wants to go. His schedule is different for a little while. However, he is OKAY, and we are going to have FUN!
Fun my fanny.
I loathe breaks. My son loathes breaks. My other son wants to live life in a perpetual break, but Lord ALMIGHTY, that child DOES NOT NEED the flexibility of breaks! We need structure, this family! We need therapy! We need picture schedules and occupational therapy! We need mommy therapy, my friends, because without it, by Friday,just five days into the break, older son is demanding, "Car. Car. Car. Car. Car. Car," seemingly non-stop. Sigh, and mama's hair is standing on end.
The car provides movement. It provides vibration. It is calm. It is a sensory comfort to him that I know he needs. He uses it when he's bored. He uses it when he is sick. He uses it when he feels general unrest. Yes, I DO understand that.
The problem is that my coping skills do not outlast his inability to cope. He truly can't handle a break in his school and the therapy he gets there. It has thrown his body off center. He doesn't know how to feel, and he is latching onto anything to make him feel better. As the break progresses, his desire for car rides has become so great that it has inevitably turned into a compulsion.
There is a difference between wanting and needing something to make you feel better and pursuing that thing because you are so internally driven to do it/get it that you'd rather die trying to have it than risk not having it at all. The latter is a compulsion. Try as I may, I can't break a compulsion.
It's morning. He's awake. I start the stairs with his morning dose of medicine.
"Car," I hear.
No, I tell him. Not now. He still needs his medicine. He has to eat. He hasn't gone to the bathroom, dressed or even come downstairs. This works on the first day. On the second day he cries. On the third day he is downstairs sitting by the door eating his breakfast. By Friday, he is refusing breakfast, screaming and tugging at the door.
With my bag of tricks depleted, I face the day with the challenge to make the car a happy place for my younger son and me as we help my older son get through the day peacefully.
That gets me to thinking: perhaps I can turn my portion of the car into a Mobile Mom Cave!
Supplies! I need supplies! Hm, candles aren't safe. A nice pair of driving shoes (giggle). Electronics that younger son can only play in the car so that he isn't grumbling about coming with us. Yes, this is the plan. I feel a shopping trip coming on as I plot to turn this bowl of lemons into a nice tall glass of lemonade--with an umbrella---OH! being carried by a Mobile Mom Cave Man Servant!!
Fresh attitude, here I come!
Your unbelievable level of continuing strength is a testament to parental love. I know that you sometimes feel that you have reached the end of your patience, but then you find a little more--enough to get you through the morning--and by lunchtime, you find enough to carry you through the evening.
ReplyDeleteIt's ridiculous that there are no services for your son during school breaks. His therapy isn't simply a nice little part of school--it's a vital part of his medical care and shouldn't be subject to interruptions, which are clearly very difficult for him. We need to fight for better accessibility to year-round care for kids who need it.
Is there any substitute that may provide what the car does--the movement and vibration and calm? A child-size car that he could ride in the yard, maybe?
I hope that one day soon, real answers are found that can ease your son's discomfort and make life easier for him and all of the other kids who struggle every day to feel okay. There must be something. There simply has to be.
♥
Once a child hits school age, the focus regarding services is to give what is needed in order to succeed in school. Home is not the school district's concern. Parents really must advocate to make sure a child's IEP goals are well rounded so that the child is able to succeed not only in school but outside of school as well. Of course, there are good teachers and therapists out there that want the same, however, not everyone does. It all depends upon the level of fire one has in one's belly to do it, I suppose.
ReplyDeleteWith that said, school break services would fall to the shoulder's of the parents to provide. It's expensive. We did it for a while, but, sadly, there is only so much families like mine can afford when considering that this is a life-long condition.
Today, I thought I would try a vibrating/massage seat overlay. Perhaps the vibration and watching some carousel videos on his ipad would soothe him?
My heart goes out to you every time I read your blog...which by the way, I absolutely adore. I can relate to most everything you write about either through my experiences with my own son or through the individuals that I care for at work.
ReplyDeleteLike Beth, I am at a loss as to why your son does not qualify for extended school year. I know every situation is different but my Bear (with some patience and extra support) could almost easily make it through the break with out going to 'summer program'. In fact, he's at the age where he realizes that no one else is going to school and wants to stay home too. ESY makes life easier for us but, as a team, his father and I could handle the summer. You guys, in my personal and professional opinion NEED ESY or respite...or something!!! And I can't understand why your school district isn't writing it into his IEP.
Do you have any agencies nearby that serve the developmentally disabled? Maybe they could help with finding a program or looking for alternative means to finance a program that would help? I know that in my particular area of upstate NY...we are saturated with such places but to what degree they can assist is not my area of expertise.
I think your vibrating seat overlay is a great idea and definitely worth a try!
Yes, he DOES qualify for extended year services. That is why this break is "just" two weeks. It is the break between the school year and start of summer. We will have another--likely three weeks--at the end of summer services and the start of a new school year.
ReplyDeleteSorry for any confusion.