Wednesday, January 28, 2009

Advice to the holier-than-thou

When you have one of those children, you are a constant target for unsolicited advice, looks of disbelief, and other things from the rest of the human population that really grate on your nerves. So, its been one of those days, my sarcasm is at its absolute worst, so you get to be the lucky recipient of my advice. I'll try to hold the profanity to the absolute minimum. And, since its been a while since I've reminded you poor helpless readers that keep showing up here, this is MY blog. You came here voluntarily and you can leave the same way. :)

1) First, if you are a person that feels inclined to give advice to a parent with a special needs child.......don't. Unless you are in a professional position to do so. No matter how well-intended the advice is, I maintain that 99.9999% of it is worthless, and probably has already been tried. Plus there is the little problem that the advice givers almost always wait to give the advice when the child is "putting on a show" somewhere. Frankly, if my daughter is wailing at me about wanting her 90th treat during a basketball game and I am holding my ground telling her "no", I don't really give a darn what you think I should do. Deal with it. And the fact that I gave her the first 89 treats trying to avoid this scene does not mean that I'm a bad parent. It just means that I'm very tired and was.....well.......trying to avoid this scene.

2) If my child is on a special diet meant to help her, do not act like I'm abusing her and do not ask rude questions such as, "What CAN she eat?" Nobody in their right mind goes out of their way to place their child on a restrictive diet without a good reason. Its a heckuva lot of work for the parents, and can be astronomically expensive to feed a child a restricted diet. And, while this isn't really "fun", it is also not abusive to feed your child fresh vegetables vs. hamburger helper. I'm not looking for your sympathy, but view my child's diet similarly to what you would a diabetic diet--it is medically necessary for my child's health. And do NOT sabotage my efforts by slipping my child one little cookie when you think I'm not looking. Just as an example, believe it or not, a little bit of gluten for a gluten-free child can do incredible damage to their GI system that takes days/weeks to reverse. This is not a game! If you are seriously interested in the health reasons behind our decisions, I'd be happy to share some information. Otherwise, bite your tongue. She gets plenty of cookies/candies/junk that falls within the parameters of the diet and I have to say, some of it tastes darn good. People think they could recognize GF food? Bet I could fool them!! :)

3) I don't want your sympathy. Period. This is my child and she has Sensory Processing Disorder. It is part of what makes her who she is, and to deny the SPD is to deny the person she was meant to be. My husband and I are dedicated to helping her succeed. This is not a terminal illness, so she will likely lead a lengthy life with this disorder. Don't try to convince us that we should just "relax" or that "everything will be fine". We get one shot at this. We can't wait until she is 12 and say, "Oh crap, lets go back to when she was 4 and do that therapy thing." I know of no parent that regrets doing everything they could for their child as early as possible. I know of lots of parents that wish they had done more. If we screw this up, it won't be you that she's living with at age 32, so nobody has a bigger stake in this than us.

4) If you want to help us, learn about SPD and how it applies to you. We ALL have sensory issues. Its part of what makes us human and different from one another. I can't tolerate the feeling of cottage cheese in my mouth. Cold....lumpy.......EEEEEWWWWW. That is a sensory issue. Mike hates the sound of chalk writing on a chalkboard. To the point that it raises goosebumps. That is a sensory issue. We all have them. It becomes a disorder when the sensory issues are so overwhelming that they interfere with normal daily functioning. Be attentive to other people. Sensory issues are everywhere and easy to spot, once you know what to look for. MANY children/adults with SPD are living life undiagnosed, and wondering why they are different. SPD doesn't go away, but with understanding and therapy, most people can learn to live normal lives. An auditorally-sensitive person may never be able to tolerate working in a noisy sawmill. A tactilely-sensitive person may not be able to tolerate working long days cutting hair due to the feel of the hair on their hands. But this is how we ALL choose our careers and make our life choices........we avoid the things we don't like and gravitate towards the things we do. It can be that simple. With comprehension and understanding of the disorder.

5) Lastly, if I am flippant, sarcastic, or rude to you--don't take it personally. The few below are actual questions I remember being asked with my own sarcastic responses below:

Q: Where's Jennica? Didn't you bring her to Dane's graduation?
My A: "Yeah.....but she's duct-taped to a flagpole out in front. We should probably go get her." (I got a great "look" for this one! :O And, heck NO, we didn't take her. Mike and I actually wanted to watch our son graduate rather than chase her around the gymnasium. )

Q: What CAN she eat?
My A: "Cashews. She eats a lot of cashews." (Folks.........there are a LOT of foods in the world that don't contain gluten and dairy products. Expand your horizons a bit.)

Q: We'll pray for you.
My A: "Great! God is already doing great things for us. He has given us the ability to read books, find specialists, and make solid decisions about the best course of action for her!" (This is not meant to offend those that DO pray for us. It is just a reflection of my sarcastic annoyance for people that seem to sit around helplessly waiting for God's healing hand. I believe that God gave us the brains to help ourselves, too. Its sort of a balance-thing for me. Praying for the money to pay for all the non-covered therapy tools/dietary supplements/books/etc. would be good!)

So forgive me a little sarcasm. We deal weekly with very heavy choices. This week, we learned that our daughter has a coping strategy for spinning that we never knew existed in anyone, much less her. (It allows her to shut out significant vestibular input to the inner ear and integrates with her vision. Confused? Join the crowd. We see that specialist on Monday so stay tuned.) We live a gluten-free/casein-free diet in this house and there are no days off. Pizza on a Friday night after a long week is not an option. There is no "run by McDonalds" on the way home. (French fries are soaked in milk and rolled in wheat flour.) We have four children and a minimum of 4 athletic events each week, not counting practices. We both work full-time jobs (mentally-necessary as well as monetarily). We are currently awaiting results on a wide variety of lab tests that will help us chart our course over the next 6-12 months for her physical health. She takes a massive amount of vitamins/minerals daily to replace what is not available in our watered-down, pesticide-ridden, antibiotic-filled food. (Short of moving to Timbuktu, starting a farm, and living in an old school bus, I haven't figured out a way yet to improve our food quality any more than we already have.) The best results for SPD and related neuro-based disorders come from an integrated medical approach. The body must be in its absolute best physical health for the brain to receive all the nutritional support it needs to get all the sensory input flowing through the synapse connections necessary. And while we get every part of the body functioning correctly, we continue to explore and define her strengths and weaknesses and discover where we need to focus our therapy. So.......forgive my sarcasm, smile, and talk about what a jerk I am later. Frankly, I'm too busy focusing on my family and whats truly important to care what you think anyway. :)

1 comment:

The Beast Mom said...

Just catching up on your blog.

Thanks for the honest post.