Friday, September 26, 2008
7 Days:Day 7: Reunited
Taken for the Flickr group, 7 Days.
Yesterday was challenging. What follows is only 1/3 of the issues we dealt with, and only the tip of this iceberg for this issue:
About 6 months ago, it became apparent that Tim's 13-year-old son Alex, who is Autistic and non-verbal, needed something more than what his then-classroom could provide so at the urging of others, we started looking at more specialized and intensive programs. Unfortunately, as our town is middle-sized and not a large city, our choices were limited. After much research and deliberation, we decided on a residential treatment facility in Indianapolis that specializes in Autism. The plan was that he would live at school during the week (with visitors almost every evening) and come home to our home and his mom's home on alternating weekends. This was an intensive intervention to teach him sign language and basic life skills that was to last only a year or two before he would return to our home and pick up with his peers here in the public school system.
At the beginning of September, after much preparation and discussion about the transition, we took him to his new school. During the course of the past 3 1/2 weeks, Alex went from a happy, social boy to a despondent, weepy boy. When we would go visit him during the week, he would sign that he was sick - he wanted to go home and thought his was his ticket out of there. We began to think that he was placed in the wrong unit or the wrong classroom and has asked for a meeting with the school to discuss other options. But when we arrived for our visit on Thursday night, and found his teacher alone in her classroom, we decided to go in and ask her how he was doing. We noticed right away that the colorful and stimulating classroom that we had toured during the summer was barren and sterile. The old teacher had left and this teacher was new. Her responses to our questions were less-than-promising. She stated that he was non-responsive in class, that he had not been using the signs he knows, but that he could pick some out on flash cards. Flash cards? Learning more signs and enhancing his communication was one of the primary reasons he was there. I'm not a teacher, but I know that using flash cards to teach Alex to communicate will not work. We were promised a Sign Language expert and that everyone in contact with Alex would know his signs. This did not happen. The teacher stated that he seemed "spaced out," "lost" and "scared." She said that he had been "targeted" by a couple kids in the class who pinched and shoved him. When asked if she thought Alex belonged in her classroom, she hesitated and couldn't give us an answer. When asked if she could provide us with a daily or weekly update, oddly enough, she didn't even have our email address. We left her classroom knowing that this teacher was incompetent to teach Alex. Disheartened, we went to get Alex out of the Autism Unit to take him off-campus for a milkshake.
At 6pm, we found our boy alone in his room, rocking (as autistic kids will tend to do) in a corner, with the lights and tv off. He had on a dirty shirt, his face was dirty, his hair greasy. He smiled at us when we walked in, but there was a cry right behind that smile. We told him we were taking him for a milkshake. He asked, "Home?" We told him that no, his mom was coming to get him tomorrow - we were just going for a milkshake. Tim changed Alex's shirt and we went to Culver's where he barely engaged with us, leaned into his dad the entire time we were there, and signed that he was sick. On the way back to his school, we called the director of the autism unit and asked for a meeting with him today. It was arranged for 1pm. When we got to the school, we walked around the track a couple of times before taking him back to his room and reading him a story. He didn't want us to go, but we told him that we would be back tomorrow and kissed him goodbye.
Leaving that child there was one of the hardest things we ever had to do. We didn't want to leave him, but we didn't want to react to the situation instead of thinking it through and responding appropriately. A lot of people had jumped thorough a lot of hoops for us to get Alex placed there, in the "best autism treatment center in central Indiana." But by the time we reached our home, we knew we were bringing him home for good today and that no promise the administration could make to us would make us feel like he was safe and well in their care.
Our meeting at 1:00 today was cancelled due to an emergency. Ten minutes after hearing that news, we were in the car on the way to Indy, with empty Rubbermaid boxes in the back. When we walked into the unit at 11:30, we asked Alex, "Want to go home?" He laughed and jumped up and down and said yes. I don't think he understood the magnitude of what we were asking until we took the boxes to his room and I started to put his clothes in one. He watched me for a minute then started grabbing things off his bed - blankie, Mr. Crabs, and his puppet Sammy, and threw them into an empty box. He was going home and he knew it. The boy that we had lost for a month was back. He giggled and laughed and hugged us and smiled all the way home.
He's asleep in the room next to ours as I type. We don't know what the future holds for Alex, but we know that it won't ever be far from us again. We know that we can't provide the best Autism treatment money can buy, but we can provide love and safety and a happy home for him. He's here to stay. This is where he belongs.
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7 comments:
Honey this is heartbreaking and terrifying. I'm so sorry he was placed in such a difficult position and that all of your research was nullified by staff changes. I know that you all had such high hopes that this program would enable Alex to be more independent and more his own person. But it sounds like his person is home now and that is good news for all of you. I hope you have more success with local programs and resources.
Paige, that just breaks my heart. One of my nephews is autistic and I know how much they've had to struggle to find the right kinds of programs for him. It shouldn't be that hard! I am glad Alex is home and happy.
I am so happy that you brought Alex home. You and Tim will give him what he needs. Paige, I believe God brought you into not only Tim's life but his boys as well. You are meant to take care of Alex. You have done such a fantastic job with Dillon and Mac, you will continue to do a great job in this role as well.
Peace my friend!
This entry brought tears to my eyes - first of sadness, and then joy. Ditto to everything Bec said. Alex will thrive with you both - nothing can top a loving, nurturing environment.
I can't decide if this is totally disappointing, or totally hopeful. Either way, I'm glad the right thing is being done!
I cant say it any better than nicole and bec already did - SO, ditto everything they said!
You are one amazing woman!
Thank you everyone!
We're spending this week picking up the pieces. We had a meeting yesterday with the local Special Services office for our school district. We left the meeting very encouraged and hopeful. Alex won't return to the school he went to last year as they have stated that there is nothing that they can do for him. He will (hopefully) start school with Mackenzie in the next few days. The program at her school not only will address his special needs and need for life-skills education, but will incorporate a sign language teacher who will hopefully help him learn sign language so he will be better able to communicate with others.
He seems to have made a full and miraculous recovery from his experience. Upon understanding that he wouldn't be going back to the school, he almost instantly perked up and returned to the happy boy that we all know and love.
We're back on track and optimistic about where we go from here.
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