She now takes 1mg  clonozapam at bedtime to help her sleep but nothing during the day as the clonozapam makes her sleepy. We have another appointment at Seattle children's hospital as our local neurologist has run out of ideas.

Over all it was a good holiday. We had to ground the kids for a couple days for some disciplinary problems but nothing too significant. We saw lots of snow over the holidays and the kids spent a lot of time sledding on the hills. 

Neither of the kids is looking forward to school which starts today but they will just have to deal with it. We worry that Amber's spasms will get out of control again. There is little we can do about it though.

Before school ended for winter break we had a sit-down with the school IEP team and Amber is now officially on the Special ED books as 'physically disabled'. We hope this will allow us to get those accommodations we have been fighting for since school started but will not know till our next meeting in 2 weeks.

Amber has only 2 more required credits to graduate and the rest are electives. They talked of having one class be a Sped study class for Amber to get extra help in those subjects she feels she has need of help in. This would not in any way cause her not to graduate and would not interfere with her getting the credits she needs for college, should she choose to go. Though of late I am having my doubts as she is becoming more depressed and anxiety ridden at the thought of continuing her education.

At least she has done well so far and college is still an option should she choose to avail herself of it. We have still a year and a half of high school to get through and that may be the deciding factor. As of now she has not completely ruled it out but she is definitely leaning in that direction. (against college)

The problem is that with her physical disabilities I do not see a very open job market for her without higher education. Yes she will be able to get SSI and Medicaid if she does not get a job but we would rather her get higher education and a decent paying job instead of being on the public welfare programs the rest of her life. Still it will be difficult for her and maybe having the State aide would not be so bad as we will not live forever to help and guide her.

At any rate the DDD social worker said to talk with the school about 'transitional' services. Apparently the school is supposed to work with DVR to educate amber in work related skills to transition for school to a work environment till she is 21. I do not know if her taking college classes will affect this transitional services thing or not but I have a year and a half to check it out.

Amber is depressed all the time and is stating that she is going to kill herself more frequently. She said as much to a friend of hers and that friend said she was being 'selfish'. Good for that friend to not put up with Amber's bull. However it made Amber angry and caused some sever depression and spasms but I think it was worth it for Amber to know she is hurting others with her bad mood and hurtful attitude.

Of a positive note we were able to get the insurance to pay for a stand-up walker and Amber is now using this at school rather than the scooter or trying to walk on her own. I am sure she is getting teased for it but she doesn't really care what others think anymore or at least she no longer lets it show, though it most likely is having an effect on her depression.

We also were able to get on DDD's roles as a contractor so now we can get those air shocks and a loading ramp for the wheel chair. They (DDD) have OK'd us to purchase these and they state they will reimburse us for the cost. So I have ordered them online and set an appointment to have the air lift shocks installed on the wife's car. Once done we should be able to haul that mobility chair around.

 The ramp is 30 inches by 9 feet and holds up to 600 pounds but can be folded into 2 sections of 15 inches X 45 inches and weighs only about 20 pounds a section. So very portable and the wife can carry the ramp in the trunk of her car. This allows us to get the mobility chair into most anyone's house (up any steps of 4 or less)

She still complains of having no friends but she does have a few. She is just more intent on seeing the bad instead of the good. We have tried talking to her as well has her psychologist but to no avail. Her most recent evaluation was pretty much in line with her last.

She spends most of her time in her room alone and it is becoming increasingly difficult to get her to engage in activities with the family. She is becoming more despondent and has even started to forgo her school work in favor of just wallowing in self pity.

She wants to get a part time job but though this may help her socially it will be to the detriment of her school work and what few friendships she does have so I have said no, not till she graduates high school. Besides her mother is driving her to so many Dr's appointments, therapies, CIP (Community Inclusion Program through WA. Pave organization) meetings and "friend" sleepovers or get togethers, that adding a job would push mom over the edge, I think.

DDD has come through with the ramp and carrier and air shocks and has OK'd a 120 inch exercise ball that costs over $100.00 so our current DDD case worker has done more in the last year than any other has done in the previous 15 combined.

Amber did get a new leg splint that hinges at the knee. It is on loan from CTU till we can get the insurance to pay for one which will take some time if ever. Her meds have not changed and she no longer benefits from the E-Stim unit we fought so hard to get for her.

Her spasms are as bad as ever and nobody seems to have a clue as to what to do about them.

One day at a time....