Monday, June 8, 2015

A Long Overdue Step

  1. 1.
    a short period of rest or relief from something difficult or unpleasant.
    "the refugee encampments will provide some respite from the suffering"
    • a short delay permitted before an unpleasant obligation is met or a punishment is carried out.

Did you read the above?....."relief from something difficult or unpleasant"......hmmmmm..... ...."a short delay permitted before an unpleasant obligation is met or a punishment carried out."
This is what comes up when you Google the word respite. When I considered respite for Alistair two years ago the words/phrases that popped into my head were: copout, sticking your kid in a kennel type environment, sterile, random staff, incapable mother, unwanted child, placing my vulnerable nonverbal child at the hands of unknown strangers, possible abuse, ..... and the list goes on. Its incredibly hard to accept that this is OK for a mother to put their five year old child in respite. I felt that I was discarding my child that I brought into the world as I couldn't cope. So the concept of putting Alistair into a respite home was put on the back burner as a concept that would likely never get considered again. Or if I did, it would be controlled out of my own home. Well I tried that. But when you need respite its not something that may possibly happen. It has to be a guaranteed date. When you need respite its gotten to a point of necessity. I had people cancel for good personal reason last summer but it threw me. I had few to no breaks. Alistair was sick to the point he was hospitalized twice last summer. Once for up to six days. Whether others saw it or not it was the first time I actually realized my son could potentially die as a child not a middle aged man. Mind you, during Alistair's first three years of life I'd check him in bed every night to make sure he was still breathing. I expected to find him dead in those early years. But it wasn't a PTSD thing it was the way I attempted to deal with my sons reality of having an undiagnosed condition with potentials for endless unknowns. But I guess I got past that and started to feel he could pull through anything if I could keep him strong and healthy. So last summer with the endless sinus infections, which caused vomiting from nasal drip and coughing till he puked, he'd loose 15%-20% of his weight in a week. I became fragile. The summer was about being house bound. I couldn't see a future with a normalacy that I could enjoy. I sure didn't like the future I saw not only for me but my whole family. Something had to change. So what did we do.....we decided to have a baby! Ya craziness right. Well you know this pregnancy has provided me with the greatest motivation to create a positive change in my families life. I unfortunately know a great deal of parents of special needs children who are physical and mentally shattered. I didn't want that to be me. One key factor for all these parents seem to be a lack of consistent respite and support.

Its odd as I could easily talk to anyone in my situation and encourage them that acquiring respite is the most positive step one could take. That they deserve it. That their whole family would benefit from it. I could go into detail regarding how important it is to take care of oneself inorder to take care of others. But for myself I couldn't wrap my brain around the whole idea of respite. Sadly it seems to be a very common theme in the world of special needs families. What I don't think people understand is that whether your child has special needs or not they are still your child. You still care for them equally to a "typical" child. You want to protect them, advocate for them, provide the best future for them and when they can't do any of that for themselves you become immersed in a world of pushing to find create that ideal life for your child.
So as Jason's work took off early this spring, my work was cut out for me to get my ducks in a row and make a serious attempt at acquiring respite. Thankfully Alistair had been exposed to all sorts of little kidlet bugs throughout Kindergarten so this spring/summer has been a lot easier on our boy health wise. The first thing I did was sign Alistair up from 9-4 each day during the week. He goes to The Exploration Place, the museum at the local park, and has a one-on-one support worker who is fabulous. Judy has had plenty of experience with children like him so he's stimulated and loving his weeks. It was the perfect thing to do as he gets bored easy.
The next thing was to set up actual respite. At the very least I had to make an attempt so that I knew I had given it a good chance. We had been receiving respite dollars each month but when it isn't scheduled like a respite home it just doesn't do quite the same for the brain. Plus my mom was the main "respite worker" which did sit well as I wanted to sit and talk with Mom not drop Alistair and run away for a brain break. Also I couldn't just get the local 14 year old girl down the street to babysit. I needed someone comfortable with seizures, administering meds in this case, lifting a 36lb non weight baring and at times biting child, and someone that wouldn't just let him lay there all day and exist.

This past May I made the big step to trial "Children's Place". He went in for two nights right from the get go. I cried the whole time. I was an emotional wreck. It was awful. But the staff were so good. I called and visited numerous times and bawled my eyes out. What a crap mom. What a copout I am. It was heartbreaking to not be able to tell him exactly what was happening. I don't have the privilege of  having my son verbally respond in anger, understanding, or emotion. I just got "the look". Where you going Mom? UGH Bawl. Then on top of it to my surprise and lack of consideration Francis was quite upset too. "I don't want Alistair to sleep over there Mom" "Don't you want him to come home with us?" Ugh Bawl again. Ya that first weekend was a tough one. I came pretty close to yanking him out of there and heading home. Thankfully, after the first attempt I haven't looked back. Alistair seems quite content coming and going from there. I had a list of basic concerns after the first weekend and Emailed the manager. Obviously the staff were made aware of my concerns as each sleepover from then on I was well informed in all my areas of concern. The most significant aspect I had to come to realize was that this respite wasn't for Alistair but for me. Anywhere else I try to educate, streamline and perfect his environment as the majority of the world is unsure how to best work with a child like himself and its my role to advocate for him. But at respite I realized I can't expect every little detail to be ideal for Alistair. As perfecting an environment for him is not easy 5 min chat. So if he's not strapped in his chair perfectly its not the end of the world. His hips won't disengage over one weekend. If he doesn't get fed as much as I would get in him its not the end of the world. We can catch up when he gets home. If they don't have his hearing aid on during his whole stay its not earth shattering.....and the list goes on. So yes this is the best thing I've done for everyone in the family including Alistair.
I am a better mother, wife and friend.

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