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Summertime Blues for an Autism Family
School for my nonverbal son Matthew ended a few days ago and already the home life is out of control with skipping through the house where the feet barely touch the ground. Normally it would be tolerated, but this is day four of a heatwave in Los Angeles where the temps have hit triple digits and we being near downtown have endured 97 degrees.
We are grateful to have electricity since many in the valleys have had power outages. We have cold water to drink and for dunking legs in the tub and also spritzing hair on the child that never slows down. My kids are safe and are not trying to get out of the house. Nicholas is busy placing cold washcloths on the panting cat that gravitates to the hottest room in the house to sit inside a window. This also happens to be the same room that Matthew enters constantly to touch every object here and there and then play with foot locker locks and wack the walls several times with his elbow.
If a magical autism therapist arrived at my door ready to grant me three wishes I would request the following:
1. Teach Matthew that the bedroom door needs to stay closed due to the air conditioner being on. This does not mean we are going out as a closed door would indicate. It now takes hours for the bedroom to cool down due to the door being kept open all day, everyday.
On the plus side Camp starts on July 1 for six weeks and I will be able to have a cold bedroom for a good part of the day. However, this does not include the long weekend days we must endure and suffer through.
2. For me to learn how to help Matthew so that he is not elbowing the walls and wacking them all the time. He needs some form of deep pressure and his body is out of balance somewhere. I need to learn the brushing protocol - a how to video would be best.
3. A guaranteed spot at the Los Angeles Zoo High School Magnet for Nicholas starting the 2010-2011 school year. We are doing California Virtual Academy for the Middle School Years. If Nicholas is not accepted I am not sure what other options there are. He has wanted to go there since he was in the third grade and would be crushed. At least they have some volunteer gigs that start at age 16.
The good news is that Matthew handled the hour long culmination for fifth grade at the Elementary School quite well. He had some fidgets that were shared with classmates and his aide sat behind him and assisted him up the stairs in the Auditorium to get his Most Improved Student award. There was one yelp out of his mouth part way through the festivities. When Matthew went up on the stage he touched the fake plant and then did one handshake, grabbed himself and then touched the fake plant one more time before winding down the steps to take his seat in the second to last row.
The night before as I was taking Matthew out of the bathtub I heard Nicholas trying to take a message on the phone while standing in front of the bathroom door. I recognized the name as someone with the School District and took the call. I ended up putting Matt to bed without doing his nails due to being distracted with the phone call.
LAUSD offered a Middle School that is seven minutes away and we happen to pass it by on the way home from CAMP. This school is on a traditional calendar and opens in August so we can go for a tour and learn the campus beforehand. I hope that his aide will accompany us as well. Matthew will be taking the bus to school, another transition we have no experience with. I printed out loads of information from the Bus system and have perused the rules of conduct from the Board of Education in Los Angeles (page 200).
I had gone to Informal Dispute Resolution, which is part of Due Process within LAUSD because I was not happy with the Middle School placement for Matthew. My child needs a school that follows the traditional school calendar months from September to June and not a year-round school that has Septemeber and October off with no structured activities to attend to and impending regression yet again.
Tomorrow we have an appointment at summer camp to go over room assignments, new rules and learn of the field trips. The following day the Regional Center Service Coordinator comes over for the IPP. Next is Matthew's birthday and open house on June 30th with camp officially starting the following day. That is the same day I get my next break. Countdown to July first has already begun.
The issues to tackle over the summer include learning about the Bus through videos and books, buying school uniform and gym pants and trying to get Matthew to be comfortable wearing these. I have seen other kids at Middle Schools wear their gym shorts on hot days so I am hoping to start the school year off with these.
There are three weeks of down time to deal with daily activities before back to school starts. I do not have a respite worker so it looks like I will not be attending the Back to school autism conference this August in Pasadena. If you do attend, these exhibitors may be showcased. There is a two-day workshop for Paraprofessionals by Diane Twachtman-Cullen, author of How to be a Parapro. I loaned that book to the new aide when he first started this past Spring. It would be great if he could attend the workshop. I think this workshop would even benefit parents. Here is the Los Angeles Special Education Paraprofessionals Handbook.
There is also a track to teach yoga and relaxing methods on Saturday afternoon. The School track on Saturday afternoon covers Augmentative & Alternative Communication for Autism and is presented by Marshal Fenig MA, CCC-SLP. He was present at the previous Triennial IEP Matthew had three years ago and offered great tips for Matthew.
I am hopeful that the last days of summer are not a repeat of the beginning summer season.
Fun summer activities for families with ASDs - Family Behavioral Resources Autism Services Newsletter, Spring 2008
Peaceful summer - FAQ autism.com
Educational Autism Tips for Families 71 page resourceful ebook for families entering the school system with a recent autism diagnosis. Find out what issues take place over the course of a school day and meet these challenges head on.
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