Friday, September 24, 2010

Not knowing how to help hurts my heart.

I am having a really hard time today.

It started last night when I took B and D out to eat. B is a special needs child. She has developmental delays and behaves much more like a very immature 7 year old then an 11 year old. She tends to get worked up easy and forget things and gets confused often.

We went to a pizza place that has an arcade since her school was doing a fundraiser there. I gave B 4 quarters at a time and told her play games and come back to check in to get more when she was done. She was doing fine. When the food came she inhaled it so she could go play some more. I gave her more quarters and told her to check back in.

I took my time eating, Devan ate, the check came, I gave the server my card, he brought it back along with a to-go box, I signed the slip, packed up the leftover food, he brought me a soda in a to-go cup, I got Devan cleaned up, got my stuff together and started looking for B. At this point she had been gone at least 30 minutes. Now where we were located she couldn't leave and not get past me but still I feel a small knot of worry form in the pit of my stomach.

I had to use the restroom but I didnt' want to leave the table because I thought if she came back and they were cleaning up the table without me there she may panic so I waited. Finally I got up and went to look in the arcade... no B. I went into the ladies restroom... no B. I looked around the restaurant... no B. I checked the arcade again... NO B!

At this point the knot is my stomach is growing so I go back and check the ladies restroom. When I didn't find her I thought of how she tends to get mixed up and decided to stick my head in the men's restroom just in case but still no B. The knot is getting tighter. The restaurant is not that big and I couldn't find her.

I ask a server to check the kitchen in case she wondered back there. He came back quickly saying no one had seen a girl go back there. I asked about where the exits were. Since he said no one had gone through the kitchen that only left the main door and the patio to leave through both of which meant she had to pass me to get to so it was a long shot but at this point I am desperate. I checked the patio but she wasn't there.

I went up to the hostess and described my daughter and told her she is special needs and if she sees her stop her from going anywhere. I then started searching for any of B's friends so they could help but I didn't see any. Finally I noticed someone who looked slightly familiar in the arcade leaning against the glass. I go in the arcade and there is B... standing between 2 video games where it was impossible to see her!

The knot of worry relaxed... but only for a moment. Now that I knew she was alright I was pissed off! Here I am searching for her, dragging a struggling toddler around looking for her, and a heartbeat away from having my bladder explode.

I asked her what she was doing and she said "Playing with my friends".
I asked her if she knew she was supposed to check in and she said "yes".

It's not that she didn't know she needed to check in. Now the problem is did she disobey the check in rule because it slipped her mind due to her  issues remembering and following directions or was she being a normal 11 year old who just lost track of time or didn't care to check in.

As I ask her questions trying to determine this it gets clear that I won't find out. B tells you whatever you want to hear, so when I asked sarcastically "Where you trying to get me upset?" she says "yes". Now how do you handle that?!?!

We have spent years and countless hours and dollars trying to find out exactly what is wrong with B. We know she doesn't learn the way other kids do. But we have yet to get a specific diagnosis. We have been told "mentally deficient", "intellectually challenged" and "mentally challenged". It all comes down to MR (Mental Retardation) which is the extremely broad label and offensive to boot!

The neurologist has ruled out several things... like walking seizures and several chromosome disorders and malformations of the brain. (And let me tell you this junk is expensive even with insurance.) Basically it's harder to test for something then it is to just rule out things. We are still going through tests. Right now the doctor is trying to treat her symptoms because you can't really treat the cause.

She is currently on ADHD medicine (which we call her Chill Pill) because it was supposed to help with self control and focus. Let me say that after 2 months on it... I don't think it's working. It seemed to be at first but I don't see much improvement.

The hardest part of all this is how I handle it. I don't know what to do for her. I don't know how to discipline her because I never know what is a result of her disability or what is her just being a kid. I don't know how to help her. I fee like I smother her in an effort to help and protect her and then I try to back off but when I do something always happens to make me feel like I shouldn't have given her such leeway.

I wish the doctor could just tell me what I should do for her. What should expect of her? What should I not expect? I told James at the next doctor appointment these are the things we have to find out or else we need a new doctor. I feel like I am failing her and it hurts my heart. And that is why I am having such a bad day. Because even though I love her with all my heart I still feel helpless when it comes to her. It's heart breaking.

As a mom we feel like we should have all the answers and when we don't we feel like failures. We realize we set expectations of ourselves unreasonably high but we still do it and when we fall short we beat ourselves up about it. And yet we never allow ourselves to lower the bar. Not when it comes to our children. And maybe that's a good thing. As long as we expect to have all the answers and always get it right we will continue to strive for perfection. Yeah, we will probably never make it but we will be amazing parents in the attempt.

1 comment:

  1. I am a special education teacher (on leave for now to stay home with my little boy.) She probably needs some sort of visual or auditory reminder to "check in." My former students (that were close in age to your daughters) would not have been able to remember to check in without some sort of aid. I do not think she was being a typical pre-teen or trying to fool you. Feel free to email me ( if you need any strategies or aids to help your daughter become more independent. You are a wonderful mom for setting the bar high & working hard to help her to achieve success & independence! I applaud your efforts!