When was life with autism ever simple?
July 17, 2007 by Kristina Chew, PhD
Filed under Health
It has happened again.
Just when it seemed to Jim and me that we had filled out the last of those “change of address” cards for the post office, it looks like we will have to again in the not-too-distant future. It was just over a year ago that we moved into the basement of my in-laws’ house so that my son Charlie could go to school in the in-district autism program in their town. Charlie had been in an autism classroom in a different New Jersey town, in an older suburb a short train ride from New York (when we looked east at night, the sky still glowed orange, from all the city’s lights). After two years of “doing kind of ok,” it all went bad: Charlie’s academic learning ground to a complete stop; he lost skills (the use of a fork; of the bathroom); his head-banging increased and became a daily occurrence, as did calls to me from the school nurse. In November 2005 we took Charlie out of his school classroom and briefly home-schooled him until we found a placement in a small private school that closed in June of 2006. We knew the school might close and had already formulated an option, moving in with my in-laws.
I chronicled Charlie’s transition into his new home house here on my old blog, Autismland, and also his transformation into a happy, iPod-listening school boy who has been known to wait for the bus on Saturday morning, with backpack and self-packed lunch beside him. Some friends have noted that they miss the daily accounts of Charlie’s and our adventures: I am afraid that, were I post so regularly on Charlie’s days, things would seem a bit boring because, while the inevitable anxious moments arise (tomorrow contains at least two: 8 o’clock dentist appointment and my parents are leaving for their home in California), Charlie has been well. He has learned not to hit his head thanks to the good efforts of his teachers and his ABA home therapists—–and this single fact is reason enough for Jim and me to say, this move was worth it. Charlie can read about 25 single words when presented on a special reading board. He keeps calling 40 “forty-zero.” He talks in single words, short phrases, and he warbles. He is in a self-contained autism classroom with a high ratio of teacher/aides to students. We added “laundry folding” to his IEP goals as a pre-vocational skill to learn (Charlie is 10).
It has definitely been worth it.
We have to move.
Charlie loves living in his grandparents’ house. There are carpets, there is plenty of running room, there is a very large front yard and a long driveway for him to run up and down, there are three garages. Seeing this, Jim and I hesitate—fear—to move him.
My in-laws’ health has long been in decline. My father-in-law has multiple sclerosis; my mother-in-law has a history of psychiatric illness, which has long gone untreated. Until last summer, they refused to have a nurse live with them: When they fell, when my father-in-law got into a car accident, when they had stomach illnesses, when they needed milk and bagels, they called us and Jim hurried over. They both had knee replacement surgery in January 2006 and spent months in rehab; my mother-in-law became severely depressed during this time. A number of live-in nurses have occupied the room that was my younger sister-in-law’s.
Two weeks ago, I had come back early from work as I was sick myself; I lay down on the bed to take a fast nap in preparation for a busy afternoon with Charlie. Jim was still home and finishing some work on his computer before heading to his office. Veronica, who had been the nurse for a year, had suddenly given notice and, on the last day of her employment, disappeared on a long walk.
The crash made the entire ceiling shake.
(Charlie’s at school, my half-awake mind said to myself, that was not Charlie.)
There were yells and screams and I heard Jim’s voice and knew he was trying to pick up his father whose legs are very, very weak and who had been (as Jim later told me) standing for minutes in front of the refrigerator, holding the refrigerator, and without his walker. Jim got his father up. My mother-in-law cried. My in-laws have no long-term plan for what might happen to them, despite Jim’s every effort to email his sisters, who respond succinctly. We want to do our best by them, as we have for Charlie, but it is not so easy. There have been three different nurses in the past two weeks.
I guess it’s been Generation Sandwich around here.
I am leaving out a lot of details. Suffice it to say, it would be a simpler matter (certainly from a financial perspective) to stay in this house with my in-laws. But there have been feelings of ambivalence about having “others” in their house (though my in-laws do need help, and a lot of it) and, while we will (must/want to) stay in this town since Charlie has done so well in the school, we will soon be back on the road, in search of a place to call Charlie’s house. It will be out with the boxes and the moving truck—-it will be another migration, on the long road to doing the best we can by Charlie. When was life with autism ever simple?
Charlie has been doing so very well.
I remember when when my Dad fell and I had to help him up. In a coupla days he was in the hospital, and never came home. I got turfed out of a fairly comfy house as a consequence of that. I haven’t gotten over either of those things, yet.
You have my sympathies, Ma’am.
Charlie, and my son Conor, sound very similar in many respects.
ABA has been an invaluable tool in allowing us to communicate with Conor, to provide him with speech, reading, math and “life skills” and to reduce and eliminate some self aggression behavior.
Conor learns primarily in a self contained area in a regular school. He has recently, been taught by an ABA trained TA who works on programs developed by a Clinical Supervisor. Conor does visit the mainstream classroom for limited periods of time for defined activities within his range and for socialization purposes.
I’m sorry to hear this. We ourselves are looking at a major move in the next year. I am fearful about what the change will mean for my autistic child. In the past year we have finally found a great educational setting for her in which she has flourished. Now we’ll have to start over. But I don’t have the additional stresses that you do. My thoughts are with you.
Will keep you all in my prayers dear Kristina..
I am sure every thing will work it self out.
” Charlie has been doing so very well.”
And I am positive that he will keep ‘going great guns’.. I really am!
Life is never simple with any child, particularly one with special needs. I’m in a similar situation because I’ll be graduating in the next two years and will need to find a full-time faculty position. But, I love my house, my neighborhood, and especially, my sons’ school. I hear these stories about fighting with school administrators, teachers, school counselors… I haven’t had to fight with anyone here, yet. I’m enormously pleased with our school and the way they have gone above and beyond to help us.
It’s never simple and never easy. I’ll keep sending positive energy you and your family’s way.
Well I hear it’s a buyers market right now. Wish you all the best and hope you find the perfect home in the same town.
I’m sorry that you have to go through the turmoil of moving, but I am going to hope that you find a place that is even better than where you are now. You will still have Charlie’s great school, and perhaps now you will have some of the things you and Jim really want in an abode, coupled with things that Charlie wants. It’s easy for us to see life exclusively in term of the well being of our kids. This move may be an opportunity for Jim and you to improve you own well being. I bet that will be a good thing for all three of you.
Kristina, your post is very moving and in many ways very relevant to our situation.
You’re not alone and if you ever decide to relocate to Washingotn, DC please look us up. DC has some great universties for employment considerations for you and Jim and an active ASD community.
You represent the Sandwich Generation perfectly, unfortunately. I wish you good luck — and saying that sounds so trite. If only there were an easier way.
I have several close friends who have autistic spectrum children. So many sacrifices, so many joys.
I would like to offer a program to parents and others who are caregivers at a retreat I am developing.
It would be great if I could get some of your feedback on the idea and whether or not you think it would fly…
Thanks!
I know how hard this is. We’ve had to move twice in the past year and the transitional period was not easy.
Sending prayers and best wishes your way.
Nooooooooo!
I wish that all of you didn’t have to go thru this. Because of course, even after you move, Jim’s family will still assume that you and Jim will be his parents’ primary caregivers. Only now it will be that much harder, as you will not be in the same house.
I wish you well in finding something suitable for all of you.
Regards,
Joe
SUCH a difficult set of decisions. Wishing much strength to all of you as you take the next steps.
I would not presume to be confident that all will be smooth, but it strikes me that the three of you are such a great team that, in the long run, all will be well.
Heartfelt Blessings –
A, M’s dad
It’s going to take me awhile to respond to so much kindness and community. Families moving in search of something better is a theme I keep returning to—-it is not a huge move for us at all this time and we are very settled with Charlie’s school situation, but I still often feel that the ground keeps shifting beneath my feet.
Justthisguy, thanks for your good wishes—-Jim is still feeling the back pain. Harold, our sons do sound similar. Charlie spends his entire schoolday in a self-contained classroom—-not all of the students in his class do; I’m all right with him only being in a self-contained setting, though perhaps there may be some mainstream options for him someday.
Charlie did fabulous at the dentist, mostly thanks to his ABA therapist being there and as a result of doing a “dentist program” in his home ABA sessions.
Oh boy. It sure does seem like the ground is constantly shifting under one’s feet, yes. I hope that Jim’s parents are doing OK and that the three of you (you, Jim, Charlie) find an even better home. I agree with VAB that this is an opportunity for you and Jim to create a sense of home for yourselves, too. I am sure there will be bumps along the way and some scary moments beforeyou get there, but I am also absolutely confident that you will all come out in a better place on the other side. I’ll keep you in my prayers. xoxo
Wishing you the best of luck. I hope you (the three of you) are able to find a home that you love. I can only imagine how difficult it is to try and help Jim’s parents and still take care of your own family unit. How wonderful that Charlie will stay at the same school. Hopefully that same-ness will help him with the move.
Hello, Kristina,
I just read your communication on moving. For some reason, I have had you in my thoughts and prayers for the past few days – thought it might be because we are going to Barnegat Light for the week-end and I feel nervous about how Matthew will do despite his “love” of the ocean. We find Long Beach Island to be a spiritually strengthening place for us and will be in Loveladies at the end of August. I just keep thinking about the interconnectedness with others when I read your messages. When we moved to Bucks County from Philadelphia so that Matthew Aloysius would be in a school district which has made a committment to the education of children with autism, we could not buy a house because we were having difficulty selling ours in Philadelphia. I prayed like nobody’s business and the realtor found us this ranch house to rent. It serves our needs very well and Matthew has a big backyard. However, the lady who owns it lives in England and will not sell it to us. We live with the realization that we may be asked to leave at any time (ninety days to vacate) and so I search for a house to buy. Anyway, you will continue to be in my prayers every day. Best wishes. Joan Ryan
I’m so sorry to hear about your upcoming transition. I know (from our current endeavor) that these are hard decisions to reach and act on. I will be praying for your search to be easy and to include a successful program for Charlie.
I just read a blip from entertainment weekly. came across the blisstree site.
my son William, 11. Diagnosised with severe autism at age of 3.
How is your son doing?
question did the trip to mognolia fix your son. What are the changes, improves in your son since the trip? Should i take my son to experience the same ritual as you did for your son with the shaman ritual.
my name is lynell michelle wilcox