I've had it with life on Planet Autism today!!!
The catalyst was this past weekend. I went to visit relatives, with my sister, and they were all yammering on about the latest and greatest their children and grandchildren were doing, saying, accomplishing, etc. I literally had nothing to chime in about that is even remotely comparable to report. To top it off, I felt like I was the "elephant in the room"...no one tried to brooch the subject of my son's school, his progress (or lack thereof), our lives and how we are coping. I spent more time trying not to be obvious in my watching of the infomercials which were playing on the TV behind the table we were gathered around in the kitchen.
My only comfort was the fact that, after our visit, my sister lovingly acknowledged that the whole scene had to be difficult for me and we went out for a drink and an appetizer before heading to our hotel room to turn in for the night.
I returned home to find myself very thin on patience for my son's disabilities and the seemingly endless frustration of how life just "is what it is" for him, me and my husband. Not a great way to start out a week where I am also coinciding the major part of my weaning off of the anti-depressant that put me through "hell" with its side effects this past winter and spring.
In addition, I'm so frustrated that I cannot stomach conversations with one of my best girlfriends, as of late, either. I could have screamed when she related to me that she was disappointed that it took her (typically developing) son five whole days to learn to go poop on the potty. What?!?! Are you serious?!?! We've been working on that for almost TWO YEARS now. Give me a royal break! Not to mention the fact that she was telling me all the latest amazing things her 2 month old daughter is doing...things I never realized - until now - my son never did at that age.
The week before, I had my adult (note the word - adult) ballet class and one of the ladies wasn't able to get a sitter for the night; so, she brought her daughter along. It was almost suffocating me that her daughter (younger than my son by half a year - she is going into Kindergarten this fall) was able to follow directions, played quietly, was very respectful by only whispering to her mommy if she needed to say/ask something and was able to imitate our movements. I would NEVER be able to attempt bringing my son to a class like that...even with his peers!
What am I going to do? I can't cut off my friendship, just because I'm seething with jealousy and anger over what my girlfriend's children can do and mine can't or never will; but, I am really cringing each time I see her phone number come up on the caller ID. Lord, please, have mercy! Show me the way to cope with these feelings. It's certainly not going to get any easier and I know - in my head and heart - that I can't keep waiting till 5:00 p.m. to solve my problems with a shot of rum in my Diet Coke.
On the bright side...my son is doing EXTREMELY well at his new school (which is year-round); the dark side...I'm relishing and immensely enjoying (with guilt, however) the time he is gone and I have to myself (to accomplish, without interruption or impediment, what I need and want to do). Please forgive me, Lord. Help me to continue to find joy in this journey and to inspire others in my situation to do the same. Amen!
Thursday, August 5, 2010
Sunday, January 24, 2010
Precious Lord, Take My Hand...
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...
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...
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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