Friday, September 24, 2010

With any luck, you'll never know...

what it is like on a day to day basis, dealing with special needs. It's exhausting. It's extremely stressful. It takes a huge toll on your mind and body. It's non-stop all day long. And often there is no help, because who can you leave your child with when even their own parents can't take it?

Thursday, September 23, 2010

Coming soon...

the results of all the questions, forms, test, etc.! Next Friday at 1pm I meet with the doc to go over his findings. Our PCM also finally put in the referral for OT. So hopefully we will have some answers soon!

Monday, September 20, 2010

The looks

As any parent knows, when your kids act up in public, you get dirty looks. Generally, you can ignore these, because you know you are doing what you can to correct the behavior. What are you supposed to do though when your 6 year old acts just like a 2 year old and your 2 year old acts like a 2 year old on steroids? It seems no matter what I do, I can not control my kids. My 6 year old can not sit in a chair for more than 30 seconds at a time. She is up and running and jumping and talking no matter how many times she is told to sit quietly. My almost-3 year old refuses to sit, runs away all the time, completely disregards any possible danger, doesn't stop when yelled at or called, thinks it's hilarious when you have to chase him down, laughs when you try to tell him what to do or yell at him for bad behavior, and is just plain very loud and active all the time.
At the clinic today, my kids once again embarrassed the crap out of me. They were clearly disturbing other people with their loudness and constant motion, but nothing I did or said made any difference. I tried to hold my son on my lap and he fought me, screaming that I was hurting him! My arms were wrapped around his waist and the only pressure was from him fighting to get away.

We spent 1 1/2 hours total at the clinic, between seeing the doc, going to the lab for a urine sample (which is a freaking horror story of it's own) and waiting for medicine. By the time we left, I barely made it to the car before the tears started.

I get looks everywhere we go. I don't even understand why my kids act the way they do, so how can I expect others to? I would hope it is enough that I am trying to discipline them, calm them, whatever, the entire time we are out, but I know it's not enough by all of the looks I get that clearly say, "what the hell is wrong with you and your children?!"

We went to a Special Needs Information Fair this weekend. Once we get a diagnosis for my daughter (and probably for my son in the future, because he is getting horrible about things), I am going to take some advice and have cards made up that I can give to the people who love giving me "the look". Cards that explain that there is a medical reason why my child acts this way, and that it's not for lack of proper parenting.

In the meantime, I ask that we all try to be more tolerant of the kids who are annoying us when we are out and about. There are so many unseen and not obvious medical conditions that can cause kids (and even adults, to be fair), to truly not be able to control themselves. Try giving the parents a look of support and understanding, maybe even actually tell them you appreciate how hard they are trying to keep their kids from bothering everyone else. At the very least, don't assume that they are lousy parents and that their kids must just be wild, crazy, undisciplined animals. Because that parent may very well be standing on the edge, ready to fall into the abyss.

Thursday, September 16, 2010

Why SPD?

In case anyone is wondering why I agree with the SPD diagnosis...

My daughter has always been very picky about her clothes and shoes. The past year and a half it has really escalated. She has 2 pairs of jeans that she will wear, and on some days even those drive her crazy. When I take her shoe shopping, she will try on literally 20-something pairs at 4 different stores and still not find a pair that "feels right". She has to have her shoes on very tight - if she had her way, she's wear a size smaller than she actually needs. She has been wearing a size 12 for a while now. After much searching we finally found a pair of shoes for her this summer, that she rarely complained about. She wore those shoes out playing outside, so we went to find new ones. After many hours of searching, we finally ended up buying the exact same shoes she wore out, in the exact same size. The shoes are maybe a month old now and most days she completely melts down when she has to put on her shoes because they aren't tight enough. She stretches the velcro so tight all the time that the straps are too stretched out to fasten anymore, unless she doesn't pull them really tight, which she just can't handle.

She has been late for school once already this year because she had a huge tantrum over her jeans not being tight enough. The same adjustable waist jeans she has been wearing for the past 6 months or more, and have been patched on the knees because we cannot find new jeans that don't drive her absolutely insane.

I had to take her to the counselor's office once already this year with us both in tears because her shoes were "not tight enough" and after 20 minutes of it at home I finally had to get her in the car and drive to school with us both crying. She refused to go to class because her shoes didn't feel right - the counselor and I did get her to go, but she ended up going with her shoes unfastened until recess.

Oh, and when I say she melts down over these things, I mean that the instant she puts on the "offensive" item, she will start wriggling all around, whining, trying to fidget it into just the right spot so it feels right, to no avail, and she will quickly progress to screaming and crying. With her shoes she will stomp her feet and practically dance around trying to make them feel better. She will adjust them a million times. Most days she leaves for school still "grumping" about her shoes.

So apparently, this whole SPD thing would mean that these "tantrums" as we call them are not her being stubborn, they are because the shoes or jeans or whatever are literally driving her crazy. Her nervous system or brain can't process things properly so it can feel to her as if there are nails in her shoes or pins on her jeans. Let me tell you, it is so hard when she is having these fits, because there is nothing we can do! She has to wear clothes, and she has to wear shoes. We have no choice right now but to force her to wear what is obviously causing her extreme discomfort. If we do get the official diagnosis of SPD, she will go to Occupational Therapy and we will also likely be taught how to "brush" her to retrain her nervous system to handle different sensations properly.

Here's a site that has a lot of great information...

Tuesday, September 14, 2010


Our psychologist thinks my daughter may have Sensory Processing Disorder. She certainly does fit the bill for it in many ways. We're waiting on a referral to Occupational Therapy for a thorough evaluation.
He met with her today for the first time. I have met with him alone once and with my husband two additional times before now. Based on everything we have told him, and his meeting with her today, he does think there is something deeper to this than just her being stubborn about things. He will meet with her again next week. For now he will not give me any idea what he thinks it could be, because he says he would still be guessing at this point. Honestly, I'd kind of like him to guess so I can at least know what he is thinking!
I hate waiting, but apparently that is what we must do. In the meantime, we need to work on having more patience with the, uh, idiosyncrasies, because she truly may not be able to help herself.

Friday, September 10, 2010

Our new challenge

I realize I have seriously neglected this blog. Every time I try to get back to it, I fail! Due to recent events, I am anticipating the need to have a place to document events and feelings once again, so I thought now was a good time to stop in and let anyone still lurking in the wings that I plan to come back! It will all depend on time really.
We finally pursued therapy for the problems we have been having with our daughter, who just turned 6. We have now received a tentative diagnosis of Sensory Integration Disorder, which we will be having a complete evaluation done for once we get our referrals in place. We are still working with the therapist to determine what, if any, other issues are causing the problems with our daughter.
That's about it in a nutshell.