via Tears In Heaven
I was having lunch the other day with one of my favorite people, my friend Ellen. She was my piano instructor for years, has since retired, but we meet up every few weeks and yak for hours. We met at our favorite coffee shop on Friday at noon and proceeded to chat until they closed the doors on us at 3:00 pm. Ellen also has a son on the spectrum, B. He is 34, has graduated college, but is still living in her basement. We talked about how mothering a child/adult on the spectrum never ends, they will always need us. This led us to an interesting question, what would our sons be like if they were not on the spectrum? If Boo did not have autism would I recognize him? You only have to spend a few seconds in his presence to know that he is not a neurotypical kid. With B, it takes a little longer, but it soon becomes clear that he marches to the beat of a very different drummer as well. Boo was diagnosed when he was 2, B was diagnosed in his early 30s. Ellen says the diagnosis explains a lot of the difficulties he had as a child and has had as a young adult. For some reason, this got me thinking about the Eric Clapton song, Tears In Heaven. “Would you know my name, if I saw you in heaven, would you be the same, if I saw you in heaven?” However, I remembered this first lyric incorrectly and thought it was “Would I know your name, if I saw you in heaven?” If there is a heaven, and everyone is made new and whole, would Boo not be on the spectrum? If he were not on the spectrum, would I know him? Everything about Boo is different, the way he moves, the noises he makes, how he flaps and drums his hands continually, the list goes on and on. Ellen and I wondered if there was a line where the autism stops and our sons start. I don’t think that there is. I think it is all one big gumbo soup. I can’t take the autism out of Boo, and I don’t want to. Someone once asked me if I had a magic wand and could wave it and “cure” Boo, would I do it? The answer is an emphatic no. Boo does not need to be cured because Boo is not sick. Boo is Boo, plain and simple. Now, if I could wave a magic wand and make his life easier and the world more tolerant of differences, I would do it in a heartbeat. Boo and B do not need cures, they need support, empathy and understanding. They need a kinder more gentle world.
So, my thanks to Mr. Clapton for giving me something to think about, even if I remembered his song incorrectly. The song was written for his late son and not about autism, but I think it is still fits. Boo, I will always love you, in heaven and on earth. I pray that I will always know you and you will always know me and feel my love. And, to my readers, if you have some time go to YouTube and pop up some Eric Clapton, he is always a pleasure to listen to.
For a person who does not like a lot of noise, Boo Bear can be one of the noisiest kids I know. On one hand, this is good, it is easy to track him. As long as I can hear him hooting and laughing I know that all is well in his world. If he suddenly gets quiet I drop everything and come running because I know he is into something that he should not be into. In an ASD household, silence is never golden, it just makes me really suspicious.
Like many kids on the spectrum, until he was on meds at age 4, Boo Bear was a lousy sleeper. Well, put it this way, he just did not sleep, at all. Robert and I were zombies for years. After we got him on the right combo of meds he finally began sleeping. On a good night he will sleep 11-12 hours. But, once in a while, something sets him off and he pulls an all nighter. Last night was one of those nights. Maybe it is because it is the end of vacation and though he has been super good for 2 weeks, he is ready to go back to school and his routine. Maybe it was because of the super moon, which was so bright on the snowfall that it was still light outside at midnight. His room does have blackout curtains, but he was up anyway. Around 8:30 he indicated to me that he was ready to go to bed. We did the usual bedtime ritual and got him tucked in, turned off the light and shut the door. Boo decided it was time to start the party. He bounced and hooted and flapped. He made his infamous banshee noises. We brought him out a couple of times. Once he wanted more to eat, another time he wanted to use the toilet and get a drink. Both times he willingly went back into his room, but he did not settle down. From 9:00 pm until 5:30 am he bounced and shrieked happily. At 5:30 I gave up on getting any sleep and headed for the gym. I had a good workout, showered, got some coffee and headed home. I walked in the door at 8:00 am and the banshee noises were still going strong. I went in to see him and was greeted with a sunny smile. He was delighted to see me! I gave him his morning meds and he disappeared downstairs to spin like a whirling dervish on his beloved swing. After half an hour of vestibular stimulation, he came back upstairs, ate ravenously and sank into a hot bath, where he is now. I am hoping this settles him a bit. This will definitely be a day where we get out and about. At is is minus 7 F outside, we may have to be mall walkers, but that is okay. I just need to get him out and moving. I suspect that once he gets back into his school schedule tomorrow things will slide back into place.
So, I am curious, do other ASD families have pet banshees that only come out at night? Do they come out more strongly when it is a super moon? I am pretty sure that I did not order a banshee for the occasion and Robert said he did not, either. This leaves one of the three dogs as a possible culprit. My suspicion is that Max, our Springer Spaniel, probably figured out how to access Amazon and ordered a banshee. Okay, Amazon, the party is over. What is your return policy? I would like to return one shrieking banshee. I will happily keep the kid, but the banshee needs to leave. I just don’t have enough coffee at my disposal to handle another night of banshee noises. Thanks!
All I want for Christmas is impeachment, but that is not what this blog is about. I can still hope, though! Tonight was a typical Saturday night chez Herndon. Boo was rocketing back and forth between the kitchen for food and his swing where he could properly hoot and twirl. Robert and Mouse were off at a Christmas party, but Boo and I were rocking our inner introvert. Eventually, I corralled Boo and headed him towards the bathtub. His nails resembled talons, particularly one thumb nail that he was not letting anyone near. I had my sights set on that nail. Well, all I got was that one nail. Boo was not going to let me near the rest of them. I gave up and he happily let me shampoo his hair. He is all about a good scalp massage. While I was thus engaged I thought to myself, “All I want for Christmas is my kid to be able to cut his own nails.” I realized immediately that I wished in vain. He does not have coordination to button his shirt, let alone cut his nails. Oh well. I guess I am his life long nail clipper. My awesome sister-in-law also has a kiddo on the spectrum with nail issues. She got around this when she discovered that he likes mani pedis. It is a bit expensive, but it solved the problem. Somehow, I just can’t picture taking Boo to an upscale salon and turning him loose.
So, what do I really want for Christmas, both for Boo and for my family? I want my home to be a peaceful, welcoming haven. We don’t usually have family for the holidays, but I make a point to invite people over who also do not have family in the area. I invite them to invite their friends. Sometimes I only have a handful of folks, sometimes I have a houseful. This year Mouse is having a friend from school over. Her parents are on the outs and she prefers to hang out over here. Her mom and younger siblings are going to Mexico, her dad is staying home and she decided she would rather be with us. Very good. There is always room for another chair at the table and a place for more gifts under the tree. So, I want peace. I want Boo to feel this peace. Christmas is hard for him because it disrupts the flow of school and his PCAs are not around. He does not like to open presents and he does not like his schedule disturbed. Over the years he has been better able to accept the changes that Christmas brings, but it is not his favorite season. I don’t care that he does not want to open gifts. I have a few things I hope he will enjoy and I will leave them out for him, unwrapped, so he can approach them at his leisure. I want decent weather so I can take Boo out for the long walks that he craves. He does not like to play in the snow or go sledding but he can walk for miles. I want acceptance for my child and for all the other children and adults on the spectrum. I want acceptance for those who march to the beat of their own tuba, because their music is beautiful, too. I want universal health care (yes I am getting a bit political here) so parents don’t have to worry how to pay for the therapies and doctors that their child so desperately needs. No one should have to mortgage their home so their child can have speech and occupational therapy. I want peace for all of you who so faithfully follow my blog, and for your children too, on or off the spectrum. So, I may never see the day where Boo cuts his own nails, and it is not that important a wish anyway. But, I can hope, pray and work for peace, in my house and in my neighborhood. Won’t you join me and do the same?
Last Sunday Boo participated in his first state level Special Olympics meet. Over the summer we participated in softball which he was so so about. This fall we did bowling, which he loved! He does ramp bowling with his PCA, A. Ramp bowling is actually harder than it looks. One has to line up the ramp and push the ball with one hand while holding onto the ramp with the other. Boo needed a lot of hand over hand practice at first but as the fall went on I could see him gaining both skill and confidence.
The meet was last Sunday in Lakeville. Boo was scheduled to bowl at 9:00 in the morning. Like any teen boy, he loves his sleep so I did not know how he would do with being routed out of bed early on a weekend. He does however, love A, so he was willing to get out of bed for her. We loaded up the car with treats, the Ipad, extra clothes and anything we thought might be useful and headed out. Once we got there we found that the place was busy but not overwhelming. We got in a little practice and found that this particular lane did not have the nasty curve that our usual lane had. There were some preliminary announcements and the national anthem. Boo stood for the anthem but for reasons known only to him, sang along making pterodactyl noises. Whatever, it made him happy.
Boo did not seem spooked about being in a new place and bowled really well. His highest score in practice was an 80 and that is what he bowled in our first game. In his second game he bowled a 98! I was amazed. I was also very touched by how helpful all of the volunteers were. After our two games all of the athletes were taken into a different room with a podium. I was further amazed when Boo was awarded a gold medal. He stood on the podium with A to have the medal hung around his neck. He looked a little surprised but handled it fine.
Special Olympics gave all the athletes a free meal pass but by then it was getting more crowded and busy. There was a McDonalds just across the parking lot and we figured that Boo would be much happier going there and having fries, so off we went. As we came in, the breakfast menu was still up. Would I be able to get Boo his beloved fries? I asked the teen behind the counter if it were too early to get french fries. He gave me and Boo (who was proudly wearing his medal around his neck) a beautiful smile and said, “Ma’am, if you can wait two minutes I will get you and your son some fries.” I thanked him profusely. Several minutes later the three of us were at table happily eating fries. Boo seemed very pleased with himself.
Now we are between sports for a bit. Winter sports are either floor hockey or skiing, neither of which I can see Boo enjoying. However, A is taking him swimming and weight lifting at least once a week and his swimming is improving by leaps and bounds. In the spring we will give competitive swimming a try. I know that Boo really enjoyed his time bowling. He will often go to the communication part of his Ipad and make it say, “Special Olympics, bowling.” He will also ask for A, as she was the one that got him into the sport. Though the season is over we will continue to bowl off and on. It is something Boo truly enjoys and a nice way to pass the time on a cold or snowy afternoon. To anyone out there who has a child on the spectrum or a child with special needs, I highly recommend you give Special Olympics a try. I never thought that Boo would be interested in an organized sport, but once again my boy surprised me. Little by little he is finding his tribe.
For many children Halloween is a holiday that is looked forward to with huge anticipation. As a child and even as an adult, I get ridiculously excited about it. I start thinking about costumes in August. When I was a teacher, I could not wait until October 1 so I could decorate my room for the holiday. Yes, I am a bit obsessed. So, I could not wait to share my excitement with my offspring. To my utter shock Boo Bear hated Halloween and wanted to have nothing to do with it. To his credit, Halloween probably does not make much sense to a person on the spectrum. 364 days of the year one is not supposed to go knock on random strangers doors. That is against the rules. People don’t normally wear spooky or silly masks on their faces. And, isn’t there a rule about not taking candy from strangers? So, to Boo, Halloween made no sense and he wanted nothing to do with it. Mouse loved Halloween, so we would thoroughly enjoy dressing up and ransacking the neighborhood for candy. Boo was very happy to stay home.
Last year Boo’s PCA came in costume on Halloween. Boo thought that was a bit strange but okay. D, the PCA, wanted to take him out for treats. I was a bit dubious but agreed to let him try. I put Boo in his Superman cape and let him go. I expected that they would be back in 10 minutes. An hour later they returned with a bulging sack of treats. I was amazed. D said that after the first few houses Boo quickly caught one. He would ring the bell, smile widely and sign for candy. Some nice adult would put treats in his bag. He would smile again and then go on to the next house. Magic!
In my last blog I talked about Boo going to celebrate the birthday of a friend at MOA. This same friend wanted to trick or treat with Boo. Once again, Boo put on his Superman cape and headed out the door with his PCA, A. They had a glorious time. The boys were able to go up to the doors by themselves and sign for candy. They received quite a haul. The evening eventually wound down when Ravi was turning blue with cold. Boo and A came home, tired but very happy.
So, this is just another example of living outside the diagnosis and Boo doing things that I had never dreamed that he would do. Two weeks ago I never thought he would stay out late at the mall with friends. Last week I was amazed that he willingly embraced Halloween in all its sticky glory. I have said before and I will say again, the future has not yet been written. No one can forecast the future of a child when they are three years old, no one. All children are full of surprises and grow and learn at their own pace. Next week Boo will compete in the state meet for his first Special Olympics. I never thought that would happen either. I will be sure to post all the details right here.
Source: The future is not yet written