I originally started this post on Monday, August 1. It's now Sunday, August 22! Right in the middle of it, I got a phone call from Curtis telling me that his doctor was admitting him to the hospital for two blood clots in his right thigh. I'm thrilled to report that, after a three week recovery (4 nights in the hospital and the remainder at home), Curtis is doing much better, and will be returning to work tomorrow. I find it quite ironic that I was writing a post about being tired. The past three weeks just added another element to my already challenging routine! I was going to delete it and start fresh, but as I reread the post, I realized my feelings haven't changed much. In fact, the mental and emotional fatigue has reached a new level with the start of school tomorrow. I'll hopefully address those aspects in a few days. Until then, I just want to close this post out and fill in the blanks later.
I'm tired. I'm physically, mentally, emotionally exhausted. I hate when I get to this point, and I typically try to keep it under wraps. But for some reason I want to share this time. Not to get pity, but so other families who have kids with disabilities know that they're not alone.
Spring was very, very busy in the Jordan household. Wade and I traveled to VA in March for his magnetic therapy where we stayed for two weeks. In April, we followed up with a trip to New Jersey for a week of intensive MEDEK therapy. In the midst of this, we were also preparing for his annual ARD and an assistive technology evaluation. I was on a constant "high", trying to get things done and keep everything straight. The end of the school year was right around the corner, but the stress of the ARD didn't let me enjoy it too much. We went to ARD in April and ended up asking for a new assistive technology evaluation because the first one wasn't done correctly. The school had six weeks to complete that and rewrite new goals and objectives, which meant our annual ARD was scheduled for the last week of school. Unfortunately, all members of the ARD still weren't seeing eye to eye at that meeting, so we closed it out and will have a new ARD at the beginning of this school year to write more appropriate goals and objectives. The bottom line--they recommended that Wade attended a general ed pre-K class next year instead of a self-contained special education class. I'm all for that. However, they didn't think we needed to address academic goals because they think he's in line cognitively with typical four years. I totally agree he knows a lot, but he's still not going to be able to access the curriculum the way a child without physical disabilities can. And for that reason, he needs goals and objectives to help him with this. Luckily the general ed teacher at the meeting agreed with me. There's also still the matter of communication. We will be starting the school year without a recommended device by the school. I am thrilled that they recognize how smart Wade is, but without a plan in place on how he is going to express this knowledge and access the curriculum, we're not going to get very far. Needless to say, we left the meeting with some things unresolved. Which means I have had all summer to dwell on what's going to happen in just a few weeks when school resumes.
So, that's where a lot of my mental exhaustion stems from; trying to make decisions for Wade that are in his best interest. Decisions that are going to set him up for success, not failure. Decisions that, even at the young age of four, can potentially affect the rest of his life. One thing that I don't think teachers understand is that the decisions that they are helping make for my child affect them (the teachers) for one year. After the school year is over, Wade will move on up to the next teacher. However, those same decisions affect Wade, as well as our family, forever. That's not to say that the decisions made by the teachers are done so lightly. I completely understand that they throw their heart and sole into their kiddos. But at the end of the day, they get to go home. As parents to a child with a disability, we never get a break. Which leads to my emotional fatigue.
My life forever changed on May 22, 2007. Never in a million years would I have dreamed that my time would be consumed with therapy appointments, doctor appointments, ARD meetings, advocacy meetings, etc. I thought these first years would be monopolized by play groups, mommy meet-ups, birthday parties, and fun outings. I thought my biggest concern would be which park we would go to on Saturday. The life that I thought I had so much control over came crashing down. This definitely isn't the life I would have chosen, but it is the life God gave me. I can honestly say that I wouldn't trade if for the world. However, that doesn't mean that I don't like it sometimes. That I don't wish I didn't have to worry about all the things I worry about. Even a simple task of running to the store can be an obstacle. I hope and pray that once I get to the store I can find an accessible place to park. Not so we don't have to walk as far to get to the door, but so I have a place to lower the wheelchair ramp so that Wade can get out of the van. Then I hope that the store is set up in a way that the aisles are big enough to navigate. In the midst of that thought, I try to figure out how I'm going to carry all of my purchases to the register without everything crashing to the floor.
I worry about things that I don't think I should really have to worry about right now. I know that every parent thinks about who will take care of their children if something were to happen to them. But it seems like a double whammy to me. My child comes with a lot of strings attached. It's hard to not think that his disability will be a burden on the person/people who will take care of him. Just from a financial standpoint, it's a burden. So, instead of just focusing on life insurance for us and a college savings account for him, I'm figuring out the best way to allocate money and adjusting his special needs trust so that even if he has money in his name through a trust, he can still qualify for other services before diving into that account. And besides the financial side, I have plans and visions and dreams for Wade. I'm willing to fight for them. I'm his mom. Someone else isn't going to have the same visions I do, and they're not going to have the same fight I have.
Then there's the whole emotional aspect of people looking at Wade as being "different". Sometimes I don't feel like going anywhere because I don't want to have to interact with people in public. Sometimes I try not to make eye contact because I don't want to see pity in people's eyes. I don't want the obligatory smile as I push Wade in his wheelchair. But whether I like it or not, I do it. It's good for Wade to be around people, and it's good for people to be around Wade. Quite honestly, Wade just attracts people. Every single time we go out, someone engages us in conversation, and Wade eats it up. He giggles and smiles and kicks his feet in excitement as he tries so hard to form some words. He's quite the social butterfly!
And that's where I left this blog nearly three weeks ago. I could elaborate more on the emotional exhaustion, but I'll leave that for some future posts! I'm sure with school starting tomorrow, I'll have tons to write about.
Just to skim the topic of physical exhaustion, Wade is heavy. Not because he weighs so much, but because he's dead weight. When you carry him, he doesn't support himself, so it's like carrying a sack of potatoes...or 10!!! Because of that, I'm worn out. We basically have to do everything for him. It's like having the needs of a baby in a four year old's body. In order to feed him, we have to carry him to the table. In order to bathe him, we have to carry him to the bath. In order to put him to bed, we have to lift him up. If he wants to play with toys, we have to help him. If he wants to use his iPad, we have to hold it. If he wants to get around the house/other environments, we have to carry him. Of course, he has adaptive equipment (wheelchairs, strollers, gait trainers, etc.) to assist him with these things, but we (Curtis and I) still have to do the majority of the work at this point. The list goes on and on. It takes a lot of upper body strength to care for Wade, and quite honestly, it's something I lack in! The truth of the matter is, he's only going to get bigger and heavier. At the end of the day, I can't wait to get to bed. Sometimes I even wake up in the mornings anxious for bedtime:-)
However, when it's all said and done--no matter how tired I am--this is my life, and I'm truly blessed. It's not always pretty or easy, but it's full of hope and inspiration and life lessons. Just this afternoon someone said, "I don't know how you do it." I think it's something parents of kids with disabilities hear quite often. Sometimes I don't know how I do it, but I just do. And you would too if you were me.
AAC Posts from PrAACtical Week 18: May, 2016
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