They are already talking of sleepovers and spending more time together and the wife and I think it is just awesome, but though Amber was excited of having a new friend, it did not take long after her return from their visit for her to become depressed again and shut us out. We are actually hoping that this new girl will instill in Amber some sense of happiness as she seems to be well adjusted to her situation and is always cheerful, at least those times we have talked on the phone and the few times the wife has met her.

Now the bad. Amber is having more difficulty walking and the wife is afraid she cannot support her weight for long periods. The wife thinks it is time Amber start using the wheelchair whenever they are out of the house. I agree. Tami may be strong but she can only do so much and though it pains both of us Tami cannot afford to get hurt trying to support Amber. If she goes down so does the family as I cannot support Amber with my messed up leg and her brother possibly could for a short time but he has his own life to live so it comes down to whether Amber needs to use the wheelchair full time when out of the house or not. The wife and I think it is time.

To that end we have had to spend money we don't have. We have installed a ramp and carrier for the wheel chair on the wife's car. The problem is her springs are not up to the task so we are looking at adjustable air shocks, but so far have been unable to find any that fit her car. Overload springs are available at $500.00 plus tax. There was another $50.00 for the 2" to 1 1/4" inch converter for the 2" receiver of the tow hitch to fit the carrier. We already spent $375.00 for the tow hitch installed and the cost of the chair and carrier was $600.00. And we are now looking at trying to find one of those aluminum ramps they have on delivery trucks to span the stairs entering the house. Not only for Ambers chair to allow her access to the house level and which will need to be stored indoors to keep it out of the weather but also for her new friend to be able to enter the house. Amber has great difficulty going up and down stairs anymore and so would really benefit from a ramp but so far I have been unable to locate a used one and I do not think we could afford a new one. I could probably build one out of lumber but that would likely cost almost as much as an aluminum one and it would not be portable. I am thinking if we get an aluminum one we can take it to grandmas or her cousins or any where they do not have disabled access. Just load it on the Pickup and go.

Property taxes are due the end of the month (Oct) and what with our having to spend all this money just now as well as Tami having to put her car in the shop cause her heater stopped working and we have yet to find out what that will cost. At any rate there might be enough in our account to cover expenses but I think more likely I will be having to again 'borrow' money from my mother. We already spent $1025.00 we did not really have to spend with possibly another $1000.00 or more what with the overload springs and fixing whatever the heater problem is. ( The rep at the shop said if they have to tear into the dash it could be 15 hours labor or more at $100.00 an hour, so that will crush us, but Tami needs the defrosters now that nights are dropping below freezing and we do not have a garage to put the car in overnight.) With property taxes looming for our own place as well as the rentals we will definitely be 'borrowing' money from mom. I hate to use the word 'borrowing' as we have yet to be able to pay any money back and it is more like taking from someone on a fixed income herself. I feel somewhat ashamed to have to ask for the help but it is for Amber so it has to be done.

Ambers depression is growing deeper daily and her spasms are growing daily as well. She still is not able to relieve herself more than a bit here and there and has an appointment with a urologist in 2 days, as well as her GI appointment. She spent the other day at home when we put the car in the shop and did some grocery shopping and when we returned she was so depressed she was not even interested in what we had bought which usually is of great interest to the kids. They always want to know what special item they can snag before any other gets it. We got Amber some of those individually wrapped fruit pie things cause she likes to take them in her lunch. When I told her she was like : "Yea, Ok." Deadpan , No emotion. Not even a smile. We have got to find a way to get her out of this funk she is in. 

Apparently the school had a bomb threat yesterday and they did not know how to get Amber out of the building. An old friend from grade school ( they seldom say more than 'Hi' to each other anymore) was able to provide some help and eventually a teacher came to her aid but the experience got her Dystonia spasms going big time and she needed to take a pill. Also that same day another teacher in one of her classes, earlier in the day, apparently was yelling at the entire class for some reason but as Amber sits at the front of the class the noise was so loud it also got her Dystonia spasms going. It seems she can't catch a break no matter the situation.

Well when she told me I contacted the district offices and a person there was quite cordial and really seemed to want to help. Perhaps the first at the district level I didn't have to argue with to get anything done. He said he would contact the Schools insurance and if our signing a release of liability for the chair would satisfy them he had no objection to our keeping the chair at the school. 

When the wife went to pick up Amber she was told that the chair had to go by end of school the next day at the latest. So they were going to give us one more day. Apparently the VP had not been informed we were working on it through the district. In fact the VP said this had been cleared with the district??? Was it? Really? Cause I was told something quite different. So when the wife got home I called the district again to try and get some clarification. It took a while for a call back but when I got that call I was told so long as we signed a release of liability for the chair we could keep it at the school. Problem solved thanks to a District supervisor that didn't have his head up his ass like so many others, and was willing to make a few phone calls and try to make a decision that was in everybody's best interests.

Just think of the logistics of having to load and unload that chair every day. We would have tie it down,  cover it as well cause it rains a lot here and having to tote it around to every place we went. Not to mention that we still do not have the air ride suspension on the car and the carrier would drag at every dip in the road. The loading ramps I have for my pickup are not adequate for the chair and I would have to build or buy others that would make the loading in my pickup safer.

We have no money as we just paid property taxes and we are at this moment broke. We are having to ration what we spend for gas to just get around. Not going anyplace that is not absolutely necessary, till some more people pay their rent. The paperwork from DDD still has not arrived to try and get the air-ride suspension for the car or the ramp for the house so even if we bring the chair home we have no way to get it in the home and actually no way to even get it home and the school VP said no grace period. What did she expect we do? Carry it home on our backs?

Oh I'm sure I would have had another fight on my hands as I would demand that the school use their disabled bus to take Amber to and from school and no she would not be driving that chair down the 1/4 mile dirt road we live on to the current bus stop; they would be coming to our front door, or heads would roll. I was getting myself prepared for the fight and actually quite looking forward to it.

 Anyway this crisis is over. But not before it had Amber in a spasm frenzy and the wife almost to the point of tears and wanting to hit someone.

Anyway this bit of a crisis was averted thanks to a district official with the foresight to see what could be done before making a rash decision. Thanks.

The real crisis is Amber is becoming ever so much more despondent and depressed. She has apparently tried to hurt herself. Though it was not a blatant attempt at suicide it does concern us and we have a call in to her psychologist. I am hoping that she might have some intuitive thoughts as to what we might be able to do to help Amber cope. I don't think it likely. Meanwhile she told one of her teachers and I believe they are obligated to tell CPS so I expect to be hearing from them soon. The wife and I are at wits end trying to think of a way to get Amber out of her funk, but we have yet to come up with anything. Amber will not listen to us and her powers of self deductive reasoning and control of her emotions are limited by her disability as well as her severe depression.

Medication is not working and perhaps it might even be contributing to the depression? I don't know. She is crying more often but it would appear not from the physical pain but the emotional distraught. She sees and hears things the way she wants, rather than the way they are. She thinks most at the school are mocking her but we have been assured that the teachers are watching for that and it is not happening. At least not when they are around. We try to talk with Amber but she does not reciprocate and eventually runs to her room to pout and delve deeper into her depression. We cannot get her interested in doing anything and to make matters worse some promises made by others have been broken and she is not mature enough to handle the disappointment.

We are doing everything we can think of to try and make her smile. To try and get her back to a happy place. But she is fighting us at every turn. We have even talked of taking her out of school for a few months till she can see reason and calm down but we know this will just make her all the more upset cause as much as she denies it she does want to go to school and would be crushed if she were not able to. So we take it a day at a time and try to reassure her and try to keep her involved with the Inclusion program and seeing her Dr's and hope that she will be able to turn it around. 

When she was younger she still had CP but was able to see past her disabilities and have fun and be happy but now it seems her CP is consuming her and she is letting it. She needs to start seeing the positive again and not dwell on the bad. Though the bad does far outweigh the good.

You know I understand the CP makes her different in that she processes information in a black and white way. She gets disappointed and depressed when her tutor doesn't show cause his car broke down; when her cousin doesn't show cause she is having a bad day dealing with fibromialgia or kidney stones or her kid; when her psychologist cancels an appointment cause of an emergency; when homework is overtaxing her abilities;  when we have to fight for her through DDD or the Schools or the Dr's or whatever as parents who care are obligated to do. She sees everything as a personal issue that causes her to let her emotions get the best of her. This is the CP and I would like if she were able to just see these things like this as nothing of consequence and move on...but she can't.

I understand the spasms cause her pain . I understand the NLD makes learning a very frustrating experience and I even understand the loneliness of being a social outcast as I was an only child and had few if any friends when my dad was moving us from place to place, being a military man. 

What I don't understand is why she can't see how so many are trying to help her and how she might be able to help herself. Or see there is some positive progress on certain issues and that though it is slow we are making some headway toward relieving some of the obstacles. And I don't understand why she can't see the good as she once did when she was younger. All I want is to see a smile and have a pleasant conversation and see her happy once more. How do I get her to that place again? I know things are more difficult now and there is much more to contend with, but I know she has the ability to be happy cause she was once. I just don't know how to get back there again.

My hope is that when she graduates high school she will leave all that stress and baggage behind and start to see that life is not as bad as she wants to make it out to be. Sure there will be trials and setbacks. We all have to face them, but they will be fewer and hopefully less burdensome. A year and a half seems an eternity but that day will come and I just hope that the Dystonia is under control and Amber has not given up before then as I know that the stress and frustration she now has to face will be far less when high school is behind her. Till then we will continue to fight and try to make life as pleasant as possible for her. Amber just needs to fight too. There is a light at the end of the tunnel and Amber needs to fight to get there. Tami and I will never throw in the towel and I just hope Amber doesn't either.