Today my son started respite care. This means that twice a week, Monday and Wednesday, for an hour and half, my son goes out into the community with his worker Justin. This not only gets my son out and about and helps them work on his life skills, but it gives me a little break. I am with my son twenty-four hours a day, six days a week (one day a week I am at work). It can get exhausting. I don’t have a 9 to 5. I have a from son up until son down. Because SJ is such a high elopement risk, despite our best efforts and safety measures, if SJ is awake that means I am awake. This can be so draining on those days were SJ sleeps from two in the morning until four in the morning and is up before and after that. This can happen in multiple day stretches. It’s exhausting to say the least, trying to function as a wife and mother on only two hours of sleep for days on end.
For those of you wondering about school, SJ is homeschooled. We had a terrible experience with the school system here. My son was working on potty training and since he was the first one on the bus every morning this meant a couple of hours on the school bus. To avoid my son having accidents on the bus when he had no access to a bathroom, I sent my son to school in a pull-up. His teacher did not like this, she called me and asked me not to send him to school in a diaper because “it confuses him”. I tried to explain my reasoning but she would not have it. I sent him to school without a diaper and in underwear. This led to multiple accidents on the bus. Every morning my son would get to school she would call me saying I had sent him to school in wet and dirty pants. I tried to explain to her that he had dry pants on when he left but had an accident on the two hour bus ride but she did not want to hear it. It got to the point where every morning he got to school she would take him in the bathroom and inspect his body for any and every mark she could find. My son bites himself in his meltdowns, this leads to bite mark bruises on his arms. She would take pictures and send them to me accusing me of biting my son. She made multiple CPS complaints on this. She even would call and have him sent home from school because “he is having a bad day” and they couldn’t handle him. CPS and I decided it would be best to pull him out of school and homeschool him.
So yes, it can be exhausting. I am a mom, a wife, a teacher, a caregiver. I am many things, but I am also only one person. Having this hour and half break to get things done around the house that need it, such as cleaning or laundry, is much needed. It is almost impossible to do these things when SJ and I are home alone. Our laundry room is in our basement and in the short amount of time it takes me to go down there and throw in a load of laundry anything can happen, and SJ is fast! Cleaning is impossible. I have to always have eyes on SJ. I have to stop whatever I am doing to see what he is up to. This break is needed.
I have so many fears that go along with respite care. SJ requires so much care and someone who is quick to react when he tries to take off. I personally cannot catch him when he runs off. What if Justin and SJ go to the park and SJ takes off on him too? There is a fast river there at the park and SJ loves the water. What if SJ were to get hurt? What if he runs away? What if SJ has a meltdown and hurts his worker? What if, what if, what if? All the what if’s race through my head. I keep my phone on me, turned to maximum volume just incase I get that dreaded phone call.
Justin picks up SJ just as he is finishing his breakfast. SJ must sense the nervousness in me because he won’t go with him out to the car. I have to take SJ out there myself and buckle him in. Does the van had child lock doors? SJ will open the van doors while you are driving down the road. Do you want his seatbelt lock? Do you need his booster seat? Do you have my number? All the questions I asked. I don’t leave SJ with many people, I don’t trust many people with his level of needs. I get nervous. Most people think I overexaggerate the level of his needs, until they spend just a few minutes with him. He has a lot of needs and most people cannot handle the level of care he requires. He has been to daycare before, and been kicked out of daycare within a couple of hours because his needs are too great. Would this work? Would Justin be able to handle SJ?
They drive off, I watch from the living room window. I feel my breath catch in my chest. I felt like I stopped breathing until SJ returned. I sat in a chair and took it all in. Silence. Quiet. Peace. These are all such stranger concepts to me. My house has NEVER been quiet. It has always been filled with SJ’s feet running up and down the hallway, or his happy noises he makes when he vocalizes. This is eerie. I don’t like it. I have gotten so used to not having a quiet home, this just feels wrong. I sit there and watch the clock. What do I do with my time? Do I enjoy the quiet? Do I take a long hot shower? Do I clean? Do I do laundry? Do I take a nap? All things I want to do, all things that need to be done, but all I can do is sit here and worry. Will SJ be ok? An hour passes, the worry eases and I have things I need to do. I spend the next thirty minutes cleaning the house, I swept, picked up trash, vacuumed, and mopped. I paused every once in awhile to look at the clock. Time seems to be going so slow. When will SJ be home? Finally the time goes by and SJ is due to be home… but he isn’t here. Suddenly my phone rings. My heart sinks down to my stomach, what happened? It’s my husband. Justin had not been able to reach me and called Jordan instead. Jordan told me Justin was having a hard time getting SJ to leave the park, and he needed some help. My husband was on his way home from class and was just about home so he decided to go up to the park and handle it for me. I thanked him and hung up. What if Justin no longer wants to take SJ after this? What if this stops him from working with SJ? All these questions. It’s so unsettling. Justin reassured Jordan that this will not stop him from taking SJ again. Justin told us it was no big deal and not to worry about it.
My husband and SJ pulled into the driveway and I let out a big breath of relief. He was home. He was safe. He walked into the house smiling ear to ear. His face was red and sweaty. He played hard and he had a good day. He enjoyed it. He had a blast! This was good for him. It’s not very often SJ gets to go to the park and have all the attention on him, this was the best day ever for him. He needed this. He DESERVES this. This was good for him. I quickly made the three of us lunch, and we sat down and ate together. This was a good day. The house was clean, my son was home, and he had fun. Those are the things that matter. Not so much the clean house I guess, that matters to me but it’s not the most important things. The most important things are that my kids are happy, healthy, and their needs are met. This met SJ’s needs. His need to get out and explore the world around him, the need to learn and play, the need to just be a kid. This will be good for him.
I look forward to Wednesday. Not for me, but for SJ. He deserves some time away with the attention on just him. He deserves to play and have fun, to just be a kid. I am glad for this new chapter for him. I am thankful for Justin being willing to work with him. I am thankful after a year of fighting, respite care has finally been put in place for SJ. I am thankful he gets to just be a kid! This is the start of a beautiful thing. New things can be scary, and bring on a lot of emotions, but I am thankful we have this experience, and the people that made it happen. I am thankful this mama bear roared so loud for so long and our needs were finally heard. Let this new chapter begin. This is a great chapter! This will be a chapter of joy and laughter, I can feel that in my soul. This chapter is just the start of all the great things to come for SJ. Autism can be hard and messy, brutal even, but SJ has not and will not let that stop him. SJ has great things ahead for him. He has stories to tell and experiences to have. He is a special little boy with many blessings in store. He has a calling on his life, and I cannot wait to see it unfold!
Welcome To My Life 
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