A family member reached out to me this morning for some advice. She has a daughter very much like my own. She is about five-years-old (still in pre-school) with a mood/behavior disorder and high functioning autism. 

Last night, my family member took her daughter to her first soccer practice. Shortly after arriving, she had a melt-down. It was not as severe as some, but she was quite loud, and she did do some flapping. In the midst of this, my family member heard another parent remark, "Oh, we have one of those on our team." You read that right, one of those. My family member did not react to the hateful words, choosing to just get out of there as quickly as possible.

I was livid! And heartbroken for my family members.

I was at work, and so, I shared the story with some of my co-workers as we were leaving for lunch. I was certain they would all be as furious as I.

Some weren't. Some said they would have probably made the same remark. They said they wouldn't just say something like that if a child was having a meltdown though. They would also say it if a child was exhibiting poor skills on the field or didn't want to get dirty. Or any number of reasons. I questioned them, asking, "You would seriously put down a five-year-old in front of the child and/or his or her parent?" 

The answer was yes. 

I could feel my eyes fill with tears, and I had to stop talking. The subject was changed, and we carried on with our lunch plans.

But I was hurt. And very, very sad.

After lunch, one of my co-workers asked me if I had been upset by their comments, and I, generally very non-confrontational in nature, said, "Yes, very." We discussed the issues a bit more. 

I told her that the conversation at lunch had solidified my resolve to keep fighting for awareness and acceptance of children with special needs. She asked, with genuine curiosity, what awareness and acceptance could do for kids like mine. I told her that I am hopeful that these children will be treated with kindness, compassion, patience, and understanding. I told her that children emulate what their parents do and say, and if a parent feels that it is acceptable to say something negative to or about a child that is different than his or her own, his or her child will grow up doing the same thing. 

I don't think our conversation changed her mind on the topic. I do appreciate her willingness to listen to me though. I know that she did not want me to be upset; we just have a difference of opinion.

It's funny though...a couple of days ago, I was sent information about the Dallas Stars having a charity night with free tickets for families with special needs children. I told the girl who sent me the information that I was so grateful that awareness of families like mine has led to companies reaching out and offering special opportunities to experience events that they never would have before. And it is true. Movie theaters often hold special viewings for kids with autism or sensory processing disorders. Museums have special events for kids with autism. A local organization held special Santa visits away from the hustle and bustle of the mall this past Christmas. The list goes on and on. 

Awareness is spreading.  Acceptance though? I think we have a long way to go. And for that reason, for my children, for the millions of special children and families out there, I will not give up.

Today, I learned that I must keep fighting.
 
 
I was doing so well with regular updates here! And then....I stopped. I will get back into writing regularly again! If I publicly commit like that, I have to do it, right?

I thought I'd write about Laura again today. Some of you are aware that in an attempt to motivate her to make good choices at school, I set a very high bar for her...if she could have 20 days in a row of good behavior at school, she would get her ears pierced. We got very close our first go around. If I remember correctly, I think she had 14 good days in a row! And then, she stopped.

So we began again. And again. And again. And again.

She started to get bad reports every day. In addition to bad behavior, though, she also was not doing her schoolwork. Previously, her academics really had not been negatively impacted. Sure, she might have to do her work in another room with an aide, but the work was done. That was not happening anymore.

We went to Open House last week at school. When her teacher saw us, she said, "I'm sorry I didn't have the chance to call you today." I replied, "It was that bad today?" Apparently, yes, it was. Her teacher told us that she has been completely unable to focus, has been incredibly hyperactive, swings her arms wildly, can't stand in line, plays in the sink's water (even rubbing the water all over her face), she jumps and twirls, the list went on and on. Her teacher expressed great concern that she was now struggling academically. 

At home, we have also noticed some changes. Laura has always walked high on her tippy-toes, but it has changed. She now prefers to walk on the knuckles of her toes. It looks incredibly painful, but this is her preferred method of transportation. She shows zero signs of discomfort and struggles to stop herself from doing it when we tell her to stop. 
She also makes strange noises with her throat and sinuses.  She suffers from severe acid reflux and has her entire life. I know what that looks and sounds like. This is different. We've also had some issues with a throat clearing vocal tic from ADHD meds. Again, this is something different. 

She bites her fingernails to nubs, picks and peels her toenails off, and refuses to let scabs heal. Here is a recent example of a scab that she has had for probably five months now. Warning: It's not pretty!
Picture
The scab itself is small--most of what you see here is dried, smeared blood. This was right before her bath one evening.
Her teacher has spoken to us about her scab picking before. She says that she tries to limit her to one band-aid a day, but then she ends up covered in blood, like this. We have seemed to find a way to help though--finally! Tom has been putting liquid bandage on it. It stings, and she doesn't like it. It's still not healed, but it's finally looking better. 

The way she was walking was so worrisome to me. I assumed it was a sensory-seeking behavior. She has always been fearless, impulsive, and constantly craving stimulation of some kind. I feared that she would now cause serious damage. I spoke to an OT (Occupational Therapist) while at Koby's ARD meeting, and she told me that she definitely would cause serious damage. 

I called our therapy company and requested an OT evaluation. It was conducted last week, and she will begin services in about two weeks. She plans to work on her fine motor skills and self-regulation skills. She may teach her how to brush herself. I'm eager for therapy to begin and am very hopeful it will help. She believes the noises she is making are another sensory seeking behavior--she suggested it could be a physical or auditory experience that she is getting from it. 

In the meantime, Laura has a psychiatrist appointment in two days. The major shift in her behavior came and continued after her last medication change. We are constantly trying to find the just-right formula for her. We are definitely not there. We are always trying to avoid the vocal tic from returning, but at this point, I'm wondering if the vocal tic may be something we have to accept if the medication is helping her to have better control of herself. We will discuss possible medication changes at the appointment. 

In addition, we are in the process of moving her out of play therapy and into cognitive behavioral therapy every week. It's a gradual process, but we are now having her in a weekly, one-on-one session. Before, she and Troy had joint or shortened bi-weekly sessions. I'm hoping that this will also help her.

All this to say--my beautiful daughter has some very real challenges. And though I am trying desperately to help her overcome them, some days, some weeks, I wonder if we will. I do know this: I love her far too much to give up. And I know she WILL get those ears pierced one day!