I have woken up very tearful today. Not because of Jay, but because of JC. Yesterday, I came home and he was in his underjocks, lying in bed in his darkened bedroom, reading. He had not eaten the lunch I had put out for him. Since I was early coming home from the hospital, I offered for us to go to movies. He usually loves the movies.
“Nah, I’m good.” his favourite saying.
“How about a walk.”
“Nah, I’m good.”
“Is there anything you would like to do?”
“Nah, I’m good.”
“JC, you have to do something. You have not left this house since you broke up from school. Plus you have not really got dressed for the entire holidays.”
“Well, why do I have to, I am only at home.” Guilt perforates my entire body.
“Well, let’s do something.”
“I don’t want to, Mum, how many times do I have to tell you. Now, can you get out of my room.” His room is in fact our other lounge, which he calls his room. It is his sanctuary and he doesn’t like anyone else in it, unless you are capable of playing Call of Duty with some level of competence and I certainly don’t fit that bill. I get up, walking out of the room feeling dejected. Without warning tears stream down my face. I worry so much about JC. How is he going to cope in the real world. I feel I am failing miserably at teaching him the life skills that are going to be necessary for independent living. I wonder if he will ever leave home. I wonder if we will be his carers forever, even though he is intellectually capable. He refuses to do anything and try as we might, we cannot get him to budge on anything.
Communication is almost impossible with JC. He has no desire to see his sister in hospital and literally lives in a world that is of his own making in a space that is probably nine square meters. My mind is racing with all the possible outcomes life may have in store for him. I feel I have neglected him these past two weeks, despite knowing we would not have left the house in that time. I decide to try again.
“Do you want to go for a milkshake?”
“No, Mum, now leave me alone.”
Dee gets home and I am in tears. “What is in store for us, what is in store for JC? Dee he won’t even leave his room now, he is like a vampire sitting in darkened room.”
“I’ll talk to him, but when I am scratching his back, he will be calmer then.” Dee received a back scratcher for christmas from Jay and it was honestly the best gift. Now JC has to have his back scratched/tickled every night. We realised quickly that this a sensory thing that calms him – he is most receptive at this time.
I retire to bed with my laptop to research PDD NOS and adolescent social skills. A study I find says that around 50% of ASD adolescents are socially isolated, never leaving home and never being invited out by friends. JC fits this perfectly. They also are the most socially isolated cohort out of all people with disabilities. I find this disheartening and not encouraging.
Dee comes in. “Right I have got him to agree to go on holiday with us.” Like he has any choice in the matter.
Still, I wake up this morning teary. I phone JC’s psychologist on the way to the hospital. “I am deeply concerned about JC. He has now taken to not getting out bed and reading in a darkened room all day. He won’t even come out for meals. All he says is that he wants us to leave him alone. I am so worried about him and his outlook.”
“I can’t see you without JC, Sarah, because Medicare won’t allow it.” Damn! JC refuses to see the psychologist any more and I have been advised not to push it. “I can refer to you to other services.” By now I am at Jay’s room and tears are streaming down my face.
“No-one seems to understand. No-one knows how worrying it is for us and also how isolating it is.”
“I know Sarah and I am worried about your mental health at this point. You need to see someone.” No, I need to get support for my child with autism that won’t leave the friggin’ house. I take the numbers down of the services and smile at Jay.
“What’s wrong Mum.”
“Just JC love, I worry so much about him. I just wonder what his outlook will be and sometimes I just do not have the energy to fight him all the time. My own depression doesn’t help.” Jay nods, but looks worried. “Don’t you worry, love. it will be fine. I’m just not having a good JC day today. He is so isolated and it worries me so deeply.”
We change the subject. “So, off to the clinic.” I notice a heat pack on Jay’s tummy. “Have you had pain today?”
“Yes, I have and some major tightenings.”
“Well, let’s keep an eye on them and then we can let Bec know.”
I take her downstairs. It is still hot and stuffy and absolutely heaving with pregnant women. Bec keeps us waiting quite a while. Eventually she calls us into her office. “You look well, Jay. Nearly 28 weeks, who would have thought?” Jay nods. She does look well.
“Jay has had some pain today. Should we be worried?”
“I don’t think so. If baby is going to come, it is going to come. You are in the best place possible. But you do need your anti-D injection as you will be 28 weeks tomorrow. Once you have had that, you can go back to the ward and I will see you, hopefully in two weeks time.” Bec smiles and hugs Jay. She is really fond of her.
Jay has her anti-D injection, which she is surprised to report is painless, and we make our way for lunch. It is not very nice. I take Jay back to the ward and we watch a bit of TV. I start to get tired and decide to head home. JC is still in his pyjamas when I get home. It is 3pm. Dee’s dad has brought JC lunch, so at least I know he has eaten. I sigh. I clearly have some acceptance skills to work on. I contemplate ringing the referral people, but decide against it. I am way too tired to retell our life history to yet another professional. It can wait until Monday.
I am unable to sleep. My mind is racing all over the place. JC wants to stay up late (again) and Dee is tired, so I again agree to stay up. I don’t mind. I cannot sleep. Eventually at 2:08am I go to bed. I realise that Jay has finally made it to 28 weeks.
As I fall asleep, I wonder if there is reincarnation and if there is, how it is that I got such a hectic life between all the death, alcoholism, autism and teenage pregnant daughters I have had to contend with. What kind of action brought about this karma and am I clocking up good karma for the next life? I am feeling sorry for myself, I know, but hey, it is 2am!!
I close my eyes and sleep finally comes to me. Please, please let Baby C make it to at least midday tomorrow!!