Positive Change

After a hospital stay a couple weeks ago (4 days) to figure out if her behavior was actually seizure related, behavior, or both, they concluded it was behavior. They blame it largely on the fact she is on the Autism Spectrum and the developmental delay she has. I was devastated. I felt like we were back to square one. Basically the doctor said we just need to cope with it all, and that it could go away in anywhere from 6 months to a year. I was so hoping they could give us some extra help, make some kind of suggestions or start her in some kind of therapy. I had to process it all, and figure out what to do next. It was like I was mourning-I cried for days. But I got up dusted myself off, and started using some new tactics to see if it could help her.

Its been a week now of trying new things and at this point it seems to be working-thank goodness for that! Also I believe her medication (for the seizures and its also a mood stabilizer) is working better for her.

Gillian has NEVER been affectionate. The past several days, she has walked up to me and hugs me multiple times in a day now. I can't tell you how good that feels. My son was like that alot, and still is. For my girl to be doing this is a dream come true. I will take all of them that she gives me. She normally has never given hugs unsolicited. There have been many times I have wanted to hug her and she would not let me, so I was so excited.

This past weekend I was alone as my husband was gone out of town. I was extremely stressed out, I had no idea how I would handle it. He always helps me with Gilly on the weekends.

Amazingly, Gillian did so well. No trouble at all. We had fun, and for the first time in a looooooooong time, I enjoyed her.

I have spoken to her school principal about making some changes to help her at school. At first I thought I would have to put her in the special ed class-actually I was geared up to do so. But, they are going to pull her out for longer than they have been (she's only been getting 55 minutes per day) and work with her. They can pull her out up to 3 hours per school day before she is considered qualified for Special ed. I am going with the flow. I meet with the teacher and others next week to put that plan in place so that next school year we are good to go.

Homework is a real problem too-I need to talk to them about adding some extra time for her homework too. I already told the teacher I will not work on it with her if it causes us (her and us) extra anxiety. Sometimes its a fight to get her to do it , so some extra time would be helpful.

I have been so grateful for the support I have gotten from wonderful friends during this awful last couple of months. I now feel like things are looking up. Trying not to get too excited though-I have learned my lesson, because it never seems to last long :(

Have to vent-Angry, Upset, etc

I just have to vent, to get something off my chest.

First off, let me tell you what really sent me flying. It was recently suggested that I "attend a parenting class" or that I should "pick up Parent's magazine" and read it for advice.

Well, Parents magazine does not offer advice on parenting a "special needs" child. Strategies that work for "normal" children just do not work for these kids. You need to use special tactics with these kids. They are just not wired like other kids.

And Parenting classes? What the hell good is that going to do? Those again, are for NORMAL kids. I have yet to see a parenting class for a kid with special needs.

Bottom line, I am HURT. Deeply hurt. This came from a long time friend. Even though I don't think her intentions were bad, it does not change the fact that I was hurt. I think I have heard it all now. Apparently its not okay to be overwhelmed. Its a normal reaction to having to raise a special needs child. Its overwhelming, and ever changing. One day to the next is never the same. One day something may work, or even a week or two, then that changes.
Then we have to figure out something else that works-that can take time and much frustration.
Its all trial and error. We feel like we are walking on eggshells alot around here.

Here is an example I found online that kind of sums it up:

"The mother of this child was so upset and frustrated that she didn’t know where to turn, and was so overwhelmed by it all that she was in tears and at the end of her tether."

That is how I feel some days. Honestly! If anyone lived like this they would too, I promise you that! Its NORMAL, Dammit!


But its not the first time someone has said something like that to me. I have also been told I should be put on antidepressants (just a short time ago, when I was waiting to see if Gillian was having seizures). Now what the hell is that going to achieve? Do you honestly think that would change the situation? NO. Absolutely not.

I will be honest, I tend to withdraw a little now and again, when things are not going well.
That is my way of coping, and there is nothing wrong with that. I think we all handle things differently. Sometimes I just need time to think, to reflect, and to try to solve what is happening. I also don't like to go out and smile if I don't mean it. I am not a good faker, so I figure whats the use faking it. Doesn't mean I am giving up (which I have also been told I am doing).

I can tell you, this is VERY difficult to live with. The good days are REALLY good. Sometimes they go for a few days or a few weeks or a few months. The bad days are REALLY bad. Again-these can last a few days to a few months. My own mom stayed here for 3 weeks and she got a taste of what I deal with every day. She could not believe it. I have to say, its been worse now than when she was here.
Its hard for someone with perfect kids to understand how hard it is to live with this day to day. Some days, its honestly hard to find something to be happy about, in the midst of this crap.
I may be happy about some things, but its so hard for me to smile on the bad days, especially when things have been bad for a while.

Things are hard right now. I don't know how to help my daughter. I worry about her future.
I wonder what will come next. For people who don't live with her and probably don't see a tantrum episode or other things out of her probably think "How hard can she be?" I guess the saying is true when they say "Walk a mile in my shoes."

Everything with Gillian right now is hard and often takes alot of fighting with her. Getting her up on time to go to school. Getting her to take her meds. Getting her to get dressed. Getting her to comb her hair and brush her teeth. Then she is off to school. The school calls VERY frequently about EVERY little thing. Then we get her home. Gotta fight to take her pills again. Homework time. Its like fighting tooth and nail to get her to do anything. And dinner-very hard to get her to eat. That also is a fight.
Bedtime does not always come easy either.

Now you tell me, would you be smiling if you had to deal with that every day? I think not.

So We Thought.......Yeah Right.

I am just venting here, I don't know what else to do.
Here we sit, on the 2nd anti-seizure medication. Last week
I was hopeful, I saw some positive change. This weekend, she
has started acting up again. EXTRA hyper, Impulsive, refuses to eat (that is bad, since she takes 10 pills a day). I am throwing my arms up in the air. I don't know what to do.
I want them to figure out if this is the seizures, or if its behavior or both. I wish they would just hospitalize her so they can do some more tests to determine this (there is a way) and be able to actually see how she is. Then maybe they can try another medication on her and see how she does. I am so frustrated. I just want her to be able to function, and I want a sane house!
Its not that way right now by any means. She is saying "I don't like mommy" and that kills me inside. She said that today in front of quite a few people (talk about embarrassing). If she only understood how I agonize over her each minute of the day, how much I do for her each day to make sure she has all the care she needs, trying to do all I can to make her happy,etc. I know she is young and just doesn't get it. But, that does not change the fact that it made me feel like crap and that it hurt. I just want my girl back!
I am a bit panicked, as my husband is leaving to go out of state in a couple weeks and lord knows how I am going to handle her then. For all I know we may both end up in the hospital!