It feels like whatever time I haven’t been spending driving carpool or cooking dinner has been spent at various doctor’s offices for the last several weeks. And I’ve got another full week of doctor (and vet – yay for the dog) appointments coming up. Now it’s one thing to have a checkup or two, but an entirely different thing if every appointment you go to results in MORE home maintenance, MORE medication to remember to take, MORE forms to fill out, MORE follow-up appointments, and MORE prodding and pleading with my children to PLEASE do what the doctor has asked of them. And then it’s a whole other thing when the appointments take the better part of a day each time – then I have the obligation to explain to the teacher (again) why my child is missing yet another day of school to go to yet another doctor appointment that can’t be scheduled after school hours, because these doctors are squeezing us in and so we take whatever opening they can manage to make. It’s simply exhausting.
I read an article the other day, detailing 7 things people don’t know about the parent of a special needs child (yes, I have a special needs child – you wouldn’t know it to look at or talk to her, but trust me – she is… my highly/profoundly gifted child is special needs at the other end of the spectrum from what you would generally think of as “special needs” but she deals with just as many issues because she is so far from the norm). I identify so whole-heartedly with each point made in that article:
- I am tired. Being a parent is hard. It takes a lot out of you. But being the parent to a child like this brings a whole new level of exhaustion. The doctor appointments, therapy appointments, and home maintenance schedules are pretty much a constant thing. Add to that the 1.5 hour carpool ride home from her special school every day of the week and I’m literally exhausted at the end of every single day. There are more days than not where I wake up exhausted. Sleep is the only time I’m free from worries of the next step or the next place we need to go, which doctor to try next, which medication to try, which school to send her to, or how to help her understand what she is going through. Frequently, my sleep is interrupted by my worry and I have hours at a time during the night where sleep escapes me, simply because my brain won’t turn off and the worry won’t subside. It’s physically, mentally, and emotionally draining on a daily basis.
- I am jealous. I listen to stories of your children, and how those children seem to want and need your love and help. And I see you with your family, out doing something fun like a walk or trip to the park, and my heart twinges. I want to be able to do those things with my child, but every time we try I pay for it. The consequences outweigh the fun and so generally we don’t go places or do things together as a family. But I want to, and that makes me jealous.
- I feel alone. Even with the parents of my child’s intellectual peers, the people I thought would identify with me, I find I have only a small amount of common ground. And so I feel isolated. Our struggles are too different to compare with those of my acquaintances and therefore little of what we deal with goes beyond even my closest circle of friends and family. It is a lonely place to be.
- I am scared. I don’t know what to do to help my child. But the responsibility is mine, as her parent. I must do the best for her that I am capable, without harming my other children and while still doing the best for them as well. The next “diagnosis” may or may not be something workable. And I don’t have any idea how many more years it will be before things will become generally tolerable. And what if I haven’t made the right choice? What if the right doctor was the one I decided to stop seeing? What if the right medication was the one we opted not to try for whatever reason? What if the school I send her to isn’t enough to meet her needs and she feels anxious and repressed (because the sad fact is, this child will never tell me about those kinds of feelings)? I am confronted with an endless set of seemingly life-altering choices, and in the realm of psychology there is no hard and fast answer or path. What if I choose the wrong one? And then comes the worry of how to pay for the myriad of doctors, medications, schools, and therapists. The money supply is very finite, and it is a constant worry that the next attempt will be more than we can afford.
- I wish you would stop saying “retarded,” “short bus,” “as long as it’s healthy…” For my situation, this is more appropriated stated as I wish you would stop saying how lucky I am and how easy it must be to have such an intelligent child, or what a wonderful parent I am to have “taught” my child so much. I didn’t teach her. She wouldn’t/won’t let me. She didn’t need or even want my help. And it is all I can do to keep up with her, to keep her stimulated enough that intellectual boredom does not translate into anger and violence toward the rest of us. My child does not fit into mainstream society, especially on a social/academic level. And that is incredibly difficult to navigate, for her and for me.
- I am human. I make mistakes. I lose my cool. I hurt when my child refuses my help or love or when she lashes out and harms me. I have my own hopes and dreams and desires that have nothing whatsoever to do with this child, but I often feel they will never be realized. I have days where I think I cannot go on, and then there are the (very) few times I feel that we are maybe heading in the right direction. I need love and support just as much as anyone else, though you may not know it by looking at me.
- I want to talk about my child/It’s hard to talk about my child. I want to talk about things that go on in my home, but all too often nobody understands. Most people I meet/talk to/confide in have never dealt with a child as intense as my own, emotionally, physically, and mentally. This child is extreme. And that means we deal with extremes on a daily basis: from talk of depression and suicide to violent physical attacks to intense intellectual discussions, punctuated with drastic and often frightening mood swings. These are “normal” to us. And so, while I want to talk about my child because there is so much we are dealing with, it is hard to open up to people who can’t understand (no matter how much they might try) what we are dealing with. And so sometimes it is easier to just smile and say “things are fine” when you ask me.
Add to all that the facts that I’ve got 2 other children who each have their own set of difficult circumstances, I personally am dealing with my own (rather large) issues, and perhaps you can understand why I am so drained.
The most recent prognosis is one that will likely require years of therapy, and as such will only be productive if said child will be willing to work at it. The mere idea of another several years of therapy is in itself exhausting, not to mention the likelihood that a lot of the therapy will exacerbate several of the issues she deals with. It will likely get a lot worse before it gets better (if it ever gets better – I have my doubts).
And through all of this, my job continues to be keeping up the cheerful face. Generally, that cheer is a facade. You probably wouldn’t know it, but I happen to have quite a knack for fake-happy. And honestly, I don’t know how to be any other way. All too often it seems nobody really wants to know what’s going on. And, like I said before, it’s hard to talk about it. It’s not “normal” in the sense most people are used to.
So if you see me, and I seem a little less chipper than possibly you remember me, please know that I’m doing everything I can to make it through the day. I’m absolutely and completely exhausted.