So, I just about reached the end of my rope this week...haven't had that many thoughts about suicide since each of my parents passed away. The kicker...couldn't "live" with myself thinking about what my death (due to suicide or not) would do to my son, my husband, my family, my friends. Since taking us all down with me is definitely not an option, I have to find the will to P.U.S.H. (pray until something happens) on.
This has been an extremely dark week. It started the week before, on a Friday afternoon, when the teacher called to (for the first time ever) say that our son had been struggling and was very "naughty" in the classroom. The bottom line was that he is not doing well with the testing and (already) we ought to consider private placement for him or a more restrictive environment due to his non-verbal state. What the %$#@(*)^%$@^%%!!!??? Less than three months ago he was a champion in the classroom and had come so far. What happened? Could you take a look at how you (the school) has gone about the testing process, please?
Number one: don't start the day the ASD child comes back from a two week long school break.
Number two: don't take the ASD child out of the environment the child is used to "working" in to test them. (Not to mention, the child doesn't know and has never met the person conducting the test!)
Number three: could you take into consideration of the situation, perhaps, that the ASD child had to stay home from school sick with the flu the next two days and wasn't feeling up to par upon their return?
Number four: if you know that the ASD child is non-verbal, has fine motor skill issues with Sign Language but does exceedingly well with their PECS book, don't make them have to answer with an Assistive Technology device they don't use functionally in the first place (even after 8 months of training on the device)!
After last Friday, when he is home from school, we have had our son exhibit significant self soothing stimulation; heightened frustration; sleep disturbance and serious intestinal issues (to put it as politely as I can think of at this moment). Every day this past week he has cried and protested about getting ready for and going to school. Before the testing began, these things were NEVER an issue (at the very least, an issue in the recent past).
Last night I asked my husband if he thought we could make it till our son turned 18 and was out of the house (Lord willing, living semi-independently)...his reply was "of course we can and we will, even if he's still living with us after the age of 18". Thank you, Lord, for blessing me with such a strong man. Thank you, Lord, for anti-depressant medication. (Now, if I could just get "back on track" I think I can get my plane out of this tail spin.) Precious Lord, Take My Hand...
Sunday, January 24, 2010
Tuesday, January 19, 2010
Tests, tests and more tests
I realize that it must be significantly harder for our son to go through all of the actual testing (60 school calendar days) necessary to determine what recommendation regarding placement for this fall's school year; however, filling out questionnaires that have anywhere from 50 to 300 questions regarding your child's disabilities is a mind numbing and desperately depressing task.
Although we live on Planet Autism, daily, it is still significantly disturbing to see his challenges laid out, perfectly described, in black and white. It is also very hard not to "freak out" about the future and what may/may not lie ahead.
Household cost of out-of-pocket medical expenses: $37,000 this year alone...Personal cost of mental and physical health: daily dose of anti-depressant and struggle to exercise/not over-eat...Cost of possibly seeing our son achieve some level of independent living and more than just a job bagging groceries at the local store: PRICELESS.
Although we live on Planet Autism, daily, it is still significantly disturbing to see his challenges laid out, perfectly described, in black and white. It is also very hard not to "freak out" about the future and what may/may not lie ahead.
Household cost of out-of-pocket medical expenses: $37,000 this year alone...Personal cost of mental and physical health: daily dose of anti-depressant and struggle to exercise/not over-eat...Cost of possibly seeing our son achieve some level of independent living and more than just a job bagging groceries at the local store: PRICELESS.
Thursday, January 7, 2010
Second verse...same as the first?
We've had a particularly challenging end to 2009 and my deepest hope is that 2010 carries more hope than heartache.
I had dinner with a very dear friend last night - to celebrate her effort to go back to school and subsequent graduation from college (at 41) - and was startled myself by all that had gone wrong in the month of December as I related it to her when she asked how my holidays were.
I'm afraid I'm also loosing my faith in believing that Jesus Christ truly knows (and has experienced) our sorrow, temptation and trials. He was never married; He never had children; He never raised a child with special needs and faced an unknown - sometimes "I want to run away from all of this" - frightening future. How can He truly understand? This has been a painful realization for me.
After vetting three candidates (around Thanksgiving) for the gaping holes (due to the loss of two Therapists - one who had a baby and one who was put on "bed rest" for the duration of her pregnancy) in our son's ABA Therapy Schedule, we hired someone who completely screwed us over. It was the "perfect storm"...it all fell apart during the Christmas vacation time off from school (which is almost impossible to endure because of the lack of routine - the vital element to our son's life on Planet Autism).
The first week she was to work she called in sick (understandable) and couldn't work 2 of the three days; two days of the second week, she called to say her dog had been bitten by another dog and she had to go to the Vet, and the following day her husband’s car wouldn’t start and she had to pick him up from work; the week of Christmas was really aggravating…she didn’t call or show up any of the days she was scheduled and only returned our (phone, email and text) messages the day after Christmas to say (in an email) that her Uncle was in the Hospital and she was too busy to check her messages because she was at the hospital with her family most of the time.
We understand that she had a family emergency; however, we would have appreciated it greatly had she contacted us to let us know she was unavailable to hold sessions so that we weren’t left hanging like we were. Our son doesn't take well to the "drop back and punt" schedule.
The “straw that broke the camel’s back” was when we returned home on the Sunday after Christmas. I left her a voice mail to confirm that she would be working with our son that week and ask if she could additionally do a session Monday afternoon (since that Therapist wanted to switch to the morning session time). She didn’t even give me the respect of returning my phone call and emailed me back that she couldn't work any of her sessions because she and her husband had decided to go to Michigan for her mother-in-law’s birthday!
When exactly had she planned on informing us of this? Why would she commit to those sessions and then back out without trying to find a sub? If I hadn’t tried to contact her, would she have even called or emailed us in her absence? So, we emailed her that we would “no longer be requiring her services” and have actually not heard from her since.
If she thought that she had taken on too much for her schedule and wanted to quit, I wish that she would have just been up front about it instead of wasting our time and allowed us to find another Therapist. We think her actions were inconsiderate and very unprofessional. The one who suffers the most is our son…when his schedule/routine is changed unexpectedly it is extremely challenging and it hurts me that he is so frustrated and upset by it. (Not to mention the high stress level which is inevitable that comes along with it for us.)
During all of this, we were supposed to have our plaster walls repaired and painted in our living room/dining room. The guy we hired didn't show or call; we had to hire another person to do the repairs (at twice the cost) and ended up doing all the painting ourselves.
In addition, while we were traveling to and from our relatives homes for the holiday, our car was hit by another car. It was a pretty crappy Christmas. At least we were able to stay focused on our blessings...we have a home that is paid for with heat, clothing and food in abundance. We have family and friends who are supportive and loving. We have a son who is actually very loving and social (a rarity for those with Autism). We have a strong marriage.
So, as I go into this next year I need to remind myself of those blessings...don't we all? It's the only way to keep pressing on while being pressed down.
I had dinner with a very dear friend last night - to celebrate her effort to go back to school and subsequent graduation from college (at 41) - and was startled myself by all that had gone wrong in the month of December as I related it to her when she asked how my holidays were.
I'm afraid I'm also loosing my faith in believing that Jesus Christ truly knows (and has experienced) our sorrow, temptation and trials. He was never married; He never had children; He never raised a child with special needs and faced an unknown - sometimes "I want to run away from all of this" - frightening future. How can He truly understand? This has been a painful realization for me.
After vetting three candidates (around Thanksgiving) for the gaping holes (due to the loss of two Therapists - one who had a baby and one who was put on "bed rest" for the duration of her pregnancy) in our son's ABA Therapy Schedule, we hired someone who completely screwed us over. It was the "perfect storm"...it all fell apart during the Christmas vacation time off from school (which is almost impossible to endure because of the lack of routine - the vital element to our son's life on Planet Autism).
The first week she was to work she called in sick (understandable) and couldn't work 2 of the three days; two days of the second week, she called to say her dog had been bitten by another dog and she had to go to the Vet, and the following day her husband’s car wouldn’t start and she had to pick him up from work; the week of Christmas was really aggravating…she didn’t call or show up any of the days she was scheduled and only returned our (phone, email and text) messages the day after Christmas to say (in an email) that her Uncle was in the Hospital and she was too busy to check her messages because she was at the hospital with her family most of the time.
We understand that she had a family emergency; however, we would have appreciated it greatly had she contacted us to let us know she was unavailable to hold sessions so that we weren’t left hanging like we were. Our son doesn't take well to the "drop back and punt" schedule.
The “straw that broke the camel’s back” was when we returned home on the Sunday after Christmas. I left her a voice mail to confirm that she would be working with our son that week and ask if she could additionally do a session Monday afternoon (since that Therapist wanted to switch to the morning session time). She didn’t even give me the respect of returning my phone call and emailed me back that she couldn't work any of her sessions because she and her husband had decided to go to Michigan for her mother-in-law’s birthday!
When exactly had she planned on informing us of this? Why would she commit to those sessions and then back out without trying to find a sub? If I hadn’t tried to contact her, would she have even called or emailed us in her absence? So, we emailed her that we would “no longer be requiring her services” and have actually not heard from her since.
If she thought that she had taken on too much for her schedule and wanted to quit, I wish that she would have just been up front about it instead of wasting our time and allowed us to find another Therapist. We think her actions were inconsiderate and very unprofessional. The one who suffers the most is our son…when his schedule/routine is changed unexpectedly it is extremely challenging and it hurts me that he is so frustrated and upset by it. (Not to mention the high stress level which is inevitable that comes along with it for us.)
During all of this, we were supposed to have our plaster walls repaired and painted in our living room/dining room. The guy we hired didn't show or call; we had to hire another person to do the repairs (at twice the cost) and ended up doing all the painting ourselves.
In addition, while we were traveling to and from our relatives homes for the holiday, our car was hit by another car. It was a pretty crappy Christmas. At least we were able to stay focused on our blessings...we have a home that is paid for with heat, clothing and food in abundance. We have family and friends who are supportive and loving. We have a son who is actually very loving and social (a rarity for those with Autism). We have a strong marriage.
So, as I go into this next year I need to remind myself of those blessings...don't we all? It's the only way to keep pressing on while being pressed down.
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