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.
Saturday, December 12, 2009
Of Christmas Programs and Starlight, Starbright
Tis the season! Let us rejoice and be glad! Merry Christmas to all and to all a happy New Year!
Of all the fond memories - and, mind you, there are many - I have from my childhood, the most fond of all coincide with this time of year. My mother made Christmas idyllic and our church services were as enchanting as they were worship filled. The decorations, the music, the mood...all so magnificent. So much love and wonder to share with my own child someday...
Planet Autism doesn't allow such sugar plum fairy filled moments or silent nights, however. All that I wanted him to enjoy and experience looks as though it is a dream impossible of fulfillment and the further I travel this road - lately - more disappointed I become.
We will never know, see or hear what it is like to watch our son perform in the children's Christmas Program with Little Lambs; we will never know, see or hear what it is like to watch our son lift up his voice in song with the children's choir; we will never know, see or hear what it is like to experience watching a performance of Tchaikovsky's Nutcracker Suite Ballet with him...the list goes on and on...all surrounded with that unanswerable question looming over my head...does he even get what it's all about/what is going on?
Someone asked me today, "have you taken your son to see Santa yet?" I chose to carefully respond (so as not to reveal our situation to this stranger and have to field, possibly, a host of other questions or sympathy) with, "no, that's a little beyond my son's ability to cope with at this point and time." My response was met with a happy, understanding chuckle and the conversation moved on. My regret did not, however.
I came very close to not decorating the house this year - all under the excuse that we are having our living and dining room walls repaired and painted, which is where the majority of the decorations have been displayed. I'm so glad I did not give in to that temptation because, when my son saw the window candelabra plugged in and lit up he took a moment to stare at it with awe and wonder (truly not the "I'm off in my own autistic world" stare) and, I think, enjoyed it's presence in the room.
Maybe he gets it...Lord, please, let it be so.
Of all the fond memories - and, mind you, there are many - I have from my childhood, the most fond of all coincide with this time of year. My mother made Christmas idyllic and our church services were as enchanting as they were worship filled. The decorations, the music, the mood...all so magnificent. So much love and wonder to share with my own child someday...
Planet Autism doesn't allow such sugar plum fairy filled moments or silent nights, however. All that I wanted him to enjoy and experience looks as though it is a dream impossible of fulfillment and the further I travel this road - lately - more disappointed I become.
We will never know, see or hear what it is like to watch our son perform in the children's Christmas Program with Little Lambs; we will never know, see or hear what it is like to watch our son lift up his voice in song with the children's choir; we will never know, see or hear what it is like to experience watching a performance of Tchaikovsky's Nutcracker Suite Ballet with him...the list goes on and on...all surrounded with that unanswerable question looming over my head...does he even get what it's all about/what is going on?
Someone asked me today, "have you taken your son to see Santa yet?" I chose to carefully respond (so as not to reveal our situation to this stranger and have to field, possibly, a host of other questions or sympathy) with, "no, that's a little beyond my son's ability to cope with at this point and time." My response was met with a happy, understanding chuckle and the conversation moved on. My regret did not, however.
I came very close to not decorating the house this year - all under the excuse that we are having our living and dining room walls repaired and painted, which is where the majority of the decorations have been displayed. I'm so glad I did not give in to that temptation because, when my son saw the window candelabra plugged in and lit up he took a moment to stare at it with awe and wonder (truly not the "I'm off in my own autistic world" stare) and, I think, enjoyed it's presence in the room.
Maybe he gets it...Lord, please, let it be so.
Wednesday, November 18, 2009
Observations
Yesterday our ABA Case Manager went to our son's school to be our eyes and ears.
We had received an extremely positive report from his Teachers last week at the P/T Conference such that I immediately issued the following ecstatic e-mail to friends and family:
"Dear Family and Friends,
We wanted to share the good news with you so that we can all rejoice together and give praise to our marvelous and wonderful God who makes all things possible…
Tonight we met with our son's Teachers. (He currently is in an inclusive atypical – all 5 children on the Autism Spectrum and a “blended” classroom – ½ typically developing; ½ with special needs/English as a second language.) They asked us for permission to have him re-evaluated in all areas because they have seen that, despite his being non-verbal, he is functioning at a much higher level than the previous years and has made significant strides in every area of his special needs.
What will happen is that he will, over the next 60 school calendar days, be evaluated by the current school teachers and therapists and they will asses what level he is at in the hopes that (they suspect) they can recommend that next year – when he enters Kindergarten – he can be placed in a typically developing child classroom with a full-time, personal, aide. This will be reviewed by his “home” school; they will run their own tests/observations as well, make their decision and then – if he is approved – create an Individual Education Program (IEP) for him in their school.
By the way, the school is only three blocks from our home and – I have to admit – I have always longed to walk him back and forth to school as the other parents do in our neighborhood.
We could hardly believe what we were hearing! This is something we only dreamed would be possible until the later years of grade school or even junior-high!
He is doing so well with his AT (Assistive Technology) device (which enables him to speak by pressing particular buttons) that he has been participating, with relevance, in classroom activities and having “conversations” with other classmates! He also incorporates his sign language and uses the PECS (Picture Exchange Communication System) when he cannot use the device to convey what he is trying to say.
They feel that, although he is still has ASD, he is only in a mild category and that his current inclusive classroom situation is too restrictive and is holding him back/teaching him inappropriate behaviors. They have observed that, in his blended classroom, he is modeling peer behavior, learning appropriate behaviors and responses, socializing in very reciprocal ways and has accelerated in his learning/participating in activities. Yes, there are still some setbacks and he can be “naughty” or uncooperative but they also feel it is because he just needs to learn how to slow down, finish a task before moving on and that he is often “bored” with the activity because he as already mastered it!
I am bursting with joy and thankfulness! I am SO grateful that we have done all that we have to make it farther than we even imagined and I am praising God that we had the resources to do so and, especially, the people around us (therapists, etc.) to make it all happen. These have been an extremely challenging three years but, looking at it with this possibility lying before us, worth all the heartache.
Please pray that he does exceedingly well during this testing period and that it truly is the right decision to have him placed in a typically developing Kindergarten next year. If that is not the case, please pray that we find the right educational program to fit his individual needs next year because it is very clear to the Teachers and Therapists that are working with him that the School based “STARS” program would not be the right fit.
Thank you for your consistent love, prayers and support! We cherish them and you tremendously!!!"
I just received an email from our Case Manager with her 2-1/2 pages of observations and have very mixed emotions...she wrote: "Overall I was happy with the progress I saw from the last school visit I went to...He handled himself very appropriately in both classrooms. He listened and paid attention to what was being told of him to do (sit down, stand up, throw it away, go to the bathroom, wash your hands, get your coat, hand up your coat). I didn’t see him paying much attention to the children in either classroom, rather to the teacher and aide, but again that could have been just today. He seemed much more vocal in the first classroom. It was during lunch and speech, but I saw more of a need to communicate through sign, pointing and grunting, speech, and only hit the buttons on the device. I do think his preferred form of communication is sign. When he used the device it was when he was instructed to, or like I said when he seemed to want to play/explore not really to request anything independently.
The second classroom he really seemed to go with the flow. He followed what others were doing, but didn’t seem to really engage with the other kids (participate in song, good morning handshake, listening when they spoke). I am not sure if today was an off day for him in regards to engaging with others, but this is what I saw. He seems very happy, I did not see ONE behavior issue in either classrooms. He seems to be happy in the place he is. He didn’t seem stressed or confused, he seemed very confident with everything and everywhere he was."
From what I understood his Teachers to be saying - at the Conference - I guess I had envisioned a more positive assessment of his performance in the classroom (especially with regard to the AT Device) than her report stated.
I'm grateful for the more objective observation and her ability to see him as a "patient" rather than a parent (whose judgment can be clouded because of their love and pride); however, I'm very worried that the Teacher's assessment may have been too positive too soon. I'm now more cautiously optimistic about what next year will bring and anxious that the test results may be "padded" in his "favor" and he'll end up floundering next year in a typically developing child Kindergarten.
I'm disheartened but not dismayed...I think I let myself fly to high and I'm finding it's a terrifying, longer, drop down than I expected.
We had received an extremely positive report from his Teachers last week at the P/T Conference such that I immediately issued the following ecstatic e-mail to friends and family:
"Dear Family and Friends,
We wanted to share the good news with you so that we can all rejoice together and give praise to our marvelous and wonderful God who makes all things possible…
Tonight we met with our son's Teachers. (He currently is in an inclusive atypical – all 5 children on the Autism Spectrum and a “blended” classroom – ½ typically developing; ½ with special needs/English as a second language.) They asked us for permission to have him re-evaluated in all areas because they have seen that, despite his being non-verbal, he is functioning at a much higher level than the previous years and has made significant strides in every area of his special needs.
What will happen is that he will, over the next 60 school calendar days, be evaluated by the current school teachers and therapists and they will asses what level he is at in the hopes that (they suspect) they can recommend that next year – when he enters Kindergarten – he can be placed in a typically developing child classroom with a full-time, personal, aide. This will be reviewed by his “home” school; they will run their own tests/observations as well, make their decision and then – if he is approved – create an Individual Education Program (IEP) for him in their school.
By the way, the school is only three blocks from our home and – I have to admit – I have always longed to walk him back and forth to school as the other parents do in our neighborhood.
We could hardly believe what we were hearing! This is something we only dreamed would be possible until the later years of grade school or even junior-high!
He is doing so well with his AT (Assistive Technology) device (which enables him to speak by pressing particular buttons) that he has been participating, with relevance, in classroom activities and having “conversations” with other classmates! He also incorporates his sign language and uses the PECS (Picture Exchange Communication System) when he cannot use the device to convey what he is trying to say.
They feel that, although he is still has ASD, he is only in a mild category and that his current inclusive classroom situation is too restrictive and is holding him back/teaching him inappropriate behaviors. They have observed that, in his blended classroom, he is modeling peer behavior, learning appropriate behaviors and responses, socializing in very reciprocal ways and has accelerated in his learning/participating in activities. Yes, there are still some setbacks and he can be “naughty” or uncooperative but they also feel it is because he just needs to learn how to slow down, finish a task before moving on and that he is often “bored” with the activity because he as already mastered it!
I am bursting with joy and thankfulness! I am SO grateful that we have done all that we have to make it farther than we even imagined and I am praising God that we had the resources to do so and, especially, the people around us (therapists, etc.) to make it all happen. These have been an extremely challenging three years but, looking at it with this possibility lying before us, worth all the heartache.
Please pray that he does exceedingly well during this testing period and that it truly is the right decision to have him placed in a typically developing Kindergarten next year. If that is not the case, please pray that we find the right educational program to fit his individual needs next year because it is very clear to the Teachers and Therapists that are working with him that the School based “STARS” program would not be the right fit.
Thank you for your consistent love, prayers and support! We cherish them and you tremendously!!!"
I just received an email from our Case Manager with her 2-1/2 pages of observations and have very mixed emotions...she wrote: "Overall I was happy with the progress I saw from the last school visit I went to...He handled himself very appropriately in both classrooms. He listened and paid attention to what was being told of him to do (sit down, stand up, throw it away, go to the bathroom, wash your hands, get your coat, hand up your coat). I didn’t see him paying much attention to the children in either classroom, rather to the teacher and aide, but again that could have been just today. He seemed much more vocal in the first classroom. It was during lunch and speech, but I saw more of a need to communicate through sign, pointing and grunting, speech, and only hit the buttons on the device. I do think his preferred form of communication is sign. When he used the device it was when he was instructed to, or like I said when he seemed to want to play/explore not really to request anything independently.
The second classroom he really seemed to go with the flow. He followed what others were doing, but didn’t seem to really engage with the other kids (participate in song, good morning handshake, listening when they spoke). I am not sure if today was an off day for him in regards to engaging with others, but this is what I saw. He seems very happy, I did not see ONE behavior issue in either classrooms. He seems to be happy in the place he is. He didn’t seem stressed or confused, he seemed very confident with everything and everywhere he was."
From what I understood his Teachers to be saying - at the Conference - I guess I had envisioned a more positive assessment of his performance in the classroom (especially with regard to the AT Device) than her report stated.
I'm grateful for the more objective observation and her ability to see him as a "patient" rather than a parent (whose judgment can be clouded because of their love and pride); however, I'm very worried that the Teacher's assessment may have been too positive too soon. I'm now more cautiously optimistic about what next year will bring and anxious that the test results may be "padded" in his "favor" and he'll end up floundering next year in a typically developing child Kindergarten.
I'm disheartened but not dismayed...I think I let myself fly to high and I'm finding it's a terrifying, longer, drop down than I expected.
Monday, November 2, 2009
Playground Etiquette
What a horrendous week...traveling is not good for every soul; especially those inflicted with Autism. Although we have been living on Planet Autism for nearly five years now, it never fails to take us by surprise the depth of distress that our son experiences from time to time.
Without fail, each time we travel, it takes him up to 72 hours to decompress (get back into the routine) upon our return home. This week...it has taken MUCH longer and it nearly broke me.
In my son's defense, there were a lot of transitions while we were away, he didn't sleep well at all and, when we returned, three of his therapy sessions were canceled and his school schedule was different (a half day on Thursday and Halloween activities throughout the week).
Halloween...a "beloved" holiday by most - I have VERY fond memories as a child of Trick-or-Treating with my best neighborhood friend in my lovingly hand sewn costumes by my Mother. I don't think the festivities or concept of it all even remotely was understandable to my son. He just delighted in being able to go on every neighbor's porch and ring every doorbell without restriction.
He had more meltdowns and defiance this week than I can recall. It was taxing on both of us as parents and we prayed fervently for relief and a better week on the horizon. He's getting so much bigger now and, physically, these episodes are getting harder to help him through. He's not even five yet and over half my height and weighs 45 lbs. What am I going to do when he's too big to pick up or, God forbid, he pushes me away and won't let me console him with deep pressure input?
Yesterday, while we were at the local mall play area, my son was happily (vocally) stimming while he played and a little girl came right up to his face and shouted "be quiet" along with a few other things. When she left his presence to go down the slide, and he followed after her, she kicked at him before going down the slide. When she bounded back up the stairs, I stopped her and firmly (but - truly - soft spoken) said to her "Excuse me, little girl, you don't have to be mean to my son...he cannot speak and does not understand."
Moments later, I saw her lamenting to her mother and she never went back on the play equipment...she gathered her shoes up - with a very sad face - and left after five minutes.
Initially, I felt justified. Today, I feel like I could have gone further and handled it "better"...coming over to explain his disorder and trying to gently educate her on tolerance/acceptance of others.
I'm torn this morning and not sure what to do with these emotions. It's not the first time I have encountered a situation like this and it's not even the meanest thing some little kid has said or done to him at a playground. He's not even 5 yet...what am I going to do as people get crueler and treat him without understanding?!?
God, I love my child but I hate Autism wholeheartedly.
Without fail, each time we travel, it takes him up to 72 hours to decompress (get back into the routine) upon our return home. This week...it has taken MUCH longer and it nearly broke me.
In my son's defense, there were a lot of transitions while we were away, he didn't sleep well at all and, when we returned, three of his therapy sessions were canceled and his school schedule was different (a half day on Thursday and Halloween activities throughout the week).
Halloween...a "beloved" holiday by most - I have VERY fond memories as a child of Trick-or-Treating with my best neighborhood friend in my lovingly hand sewn costumes by my Mother. I don't think the festivities or concept of it all even remotely was understandable to my son. He just delighted in being able to go on every neighbor's porch and ring every doorbell without restriction.
He had more meltdowns and defiance this week than I can recall. It was taxing on both of us as parents and we prayed fervently for relief and a better week on the horizon. He's getting so much bigger now and, physically, these episodes are getting harder to help him through. He's not even five yet and over half my height and weighs 45 lbs. What am I going to do when he's too big to pick up or, God forbid, he pushes me away and won't let me console him with deep pressure input?
Yesterday, while we were at the local mall play area, my son was happily (vocally) stimming while he played and a little girl came right up to his face and shouted "be quiet" along with a few other things. When she left his presence to go down the slide, and he followed after her, she kicked at him before going down the slide. When she bounded back up the stairs, I stopped her and firmly (but - truly - soft spoken) said to her "Excuse me, little girl, you don't have to be mean to my son...he cannot speak and does not understand."
Moments later, I saw her lamenting to her mother and she never went back on the play equipment...she gathered her shoes up - with a very sad face - and left after five minutes.
Initially, I felt justified. Today, I feel like I could have gone further and handled it "better"...coming over to explain his disorder and trying to gently educate her on tolerance/acceptance of others.
I'm torn this morning and not sure what to do with these emotions. It's not the first time I have encountered a situation like this and it's not even the meanest thing some little kid has said or done to him at a playground. He's not even 5 yet...what am I going to do as people get crueler and treat him without understanding?!?
God, I love my child but I hate Autism wholeheartedly.
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