Archive for the ‘special needs’ Category

Bland Hair

I ran into a friend while I was out today. We visited for a bit.  Then, she asked what I’d done to my hair. I responded that I hadn’t had time to do anything. She told me that she really liked it today. She said “I love it the way it is now. It is so bland.”

Bland? Okay. I’ll bite. “What do you mean?” I asked. She said “The last time I saw you it had lots of gray streaks. It just looks better all one color.”

Then, she went on to show me her nails. She’d just spent 2 hours in the salon having her fingernails and toenails done. I complimented her and went on with my day.

It hit me then that the definition of luxury is different to everyone. She was upset because she wasn’t able to go have fake nails put on and had to settle for a gel set of nails. I feel her pain. I didn’t have the luxury of taking a bath yesterday. That, to me, is sheer luxury. Instead, I settled for a quick shower while my husband watched our son.

My son needs constant supervision. Usually, I have the hour and a half when he’s in school each day to do the things I need to do. However, he missed school yesterday so he was home all day. And, that means I get nothing done. When I say constant supervision I mean constant. I barely have the luxury of going to the restroom.

If I leave the room to go start a load of clothes, I risk him getting into some trouble. So, when he’s home, I’m pretty much glued to his side. I don’t have the luxury of washing clothes.

One of his obsessions is money. He loves money in any shape, form or fashion. He will go through the cars looking for it. He also goes through our wallets and purses searching for change or bills. When the guy at the drive through rolls his eyes when I use a debit card to pay for that $2 drink order I wish he knew I don’t have the luxury of keeping cash or change in my car or purse.

I don’t always have the time or energy to dye my hair. I don’t have the luxury of sitting in a salon chair for hours. I am just happy when I have the luxury of being able to take 20 minutes to dye my hair myself. Even if it turns out bland.



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To those who want to chastise me for trying to what’s best for my son please just try on these Tom’s. I’ll gladly give them to you for however long you’d like to wear them. When was the last time you had to stay awake because you were afraid of what your son would do if you slept? When was the last time you got sick to your stomach at the thought of how people treated your special needs child? Are you enjoying having to meet with his teachers each year just so they know what to expect? How did it go when you had to meet with the Home Ec teacher to let her know he has a tendency to take knives and scissors? Did you stomach do a flip flop when they suggested he be removed from his favorite class based on what he might do? Are the arches getting a little tight on those Tom’s yet? Are your friends with neurotypical children shunning you because your child is different? Do they “get” why you have to do the things you have to do? Oh, it look like you’re getting a bit of a blister there. How long has it been since you went out with friends? Or, even with just your husband? Oh, those shoes are getting tighter, aren’t they?
How’s the stomach doing when you find out another child is having a birthday party that your child is the only one in the class who wasn’t invited? Or, how about the unimagined yet totally true case where a parent called to let you know his child HAD to give yours an invite because of school rules but they really don’t want him there. Maybe some socks would help that chill you get when you don’t know where your child is because they lack the understanding of who a stranger is. I’m not asking you to walk a mile. Just stop and think about what I might be dealing with when you want to lash out at me for being overly protective.
I was chastised today because I do meet with my child’s teachers at the start of each year. I like to let them know what to expect from him and what to look for in seizures and that sort of thing. I went to my meeting today feeling totally defeated. It was as if every bit of air had been sucked from my body and I was just a limp shell of myself. I did try to communicate with the teacher about the seizures and the likelihood that he would walk out with a knife or something equally dangerous. Not because he has plans but he just can’t help himself. As I sat there with assistant principals and the teacher staring at me I was reminded of how I was told by this parent of a neurotypical child that I should try staying away from the school and let things happen as they should. I realized at that moment (okay, I’ve realized it before but never quite this unexpectedly) that I would never again be a “regular” parent. I was a “regular” parent for years but now I’m not. I’ll never again be the “regular” parent who can just let things sort themselves out. I have to sit and listen to the administrators and teachers decide how to handle my child, how to keep others safe from him and what the plan is for the year. So, tell me..how are those Tom’s feeling right about now? Enjoy your shoes. I hope they’re a bit more comfy for you.

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Okay, anyone who has a special needs child knows how difficult it can be to get others to understand what you go through. I’ve tried for the past 18 years to be a good volunteer at various schools in my area. My thought is that I was helping shape our future. I thought I was helping the faculty, staff and students. Not only that but I was happy to be the eyes and ears for other parents who might not make it up to the school on a daily basis.
I have had quite the “helium hand” for these past 18 years. I typically put in 1800 volunteer hours per school year. Not something to take lightly.
This is the first week back at my son’s jr high. I was asked to volunteer in the school library again this year as I did last year. I quickly agreed as I quite like the library gals. Well, today I was told that the volunteer coordinator has arranged all the needed volunteers for the library so I’m no longer needed.
If I wanted her to I’m quite sure the librarian would fight for me to stay there but why would I want her to jeopardize her job just so I can give my time when it’s not wanted? The volunteer coordinator does not like me. Let’s get that straight. She called me names, yelled at me and even threatened my son and myself in writing last year. She’s a not really the person I’d put in charge of getting volunteers into the school. But, you know the principal has his group of minions and it so happens that he would rather have her there than the 20 people I’ve heard say they won’t volunteer with her in charge. Hope he’s made the right choice.
So, this helium hand has popped. I’ve volunteered my last hours at WMJH. I helped with the bookfair set up today and I wish them well with the sale. I truly hope that the (as I call her) Wicked Witch of West Mo is happy. She won. I’m out of there.
I’m seriously hoping to have my son transferred to a different school at some point. It was only the 4th day of school and his special ed teacher told him he was going to have to repeat 8th grade. Um, she already knows this on the 4th day of school? Really?
It has been a very difficult decision for me but it was, once again, one that was made FOR me. I am not needed so why would I continue to force myself on a school?

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