My Greatest Fear – and a Typical Day on the Spectrum
What is your greatest fear in life?
Most parents fear what will happen to their children if something happens to them. But those of us with special needs children think about it nonstop -everyday.
When my son will not get into the shower – I wonder if someone else would be able to manage him
When my daughter is hyperventilating with anxiety – I wonder if someone else will be able to calm her down
When my son bites himself then freaks in panic (true panic) because he must be a vampire – How would someone else handle that?
When my son still has potty accidents, in public, in the most embarrassing situations – Could someone else remain calm and look at the big picture?
When I can’t go grocery shopping for days because my kids are too panicked to leave the house – Will someone else prepare their stockpile accordingly?
When my daughter dumps 5 bottles of shampoo and conditioner out in one shower session – Will someone else just move on and replace the bottles?
When I get called out of work 5 days in a row because either of my kids cannot calm themselves down – How would another adult keep it together and remain calm?
This is my world. If I could change a few things I would but overall these things are what make my children so special. But if something ever happened to me – would someone else view these things as “special”. I don’t know if my children will ever be independent but I can tell you I have never been more in touch with my own mortality than I have been since having my children. I thank God every day that they are mine and pray that I will be on this earth long enough to help them achieve success and happiness. Am I unique? No – there are millions of special needs moms in this world but it takes a special ability to manage successfully and a great deal of patience.
My typical day:
Daughter wakes up at 4am and hopefully I wake up too – otherwise she is doing all sorts of OCD activities that I will need to clean up when I get up.
Try to get son up at 5:45am but he finally wanders out of bed around 6am.
They eat breakfast and take medicine.
For the next 45 minutes my daughter will tell me she is getting dressed but she is really dumping out all of her drawers and taking all her clothes off hangers.
My son needs to catch the bus and as we tell him it is almost time for him to catch the bus, he continues to become increasingly agitated that he does not want us telling him that. Then he misses the bus and gets upset that he missed the bus. Then he insists he isn’t going to school yet follows me right out the door to the car so I can bring him to school.
While I am waiting outside with my son for the bus (if he actually gets outside) or waiting outside in the car for my daughter – she will inevitably show up to the car with something strange in her backpack. Once – one of her goldfish (in a baggie); another day her cactus plant; sometimes her bank; a roll of duct tape, and today rollerskates, helmet and umbrella…
School usually goes pretty well for my daughter as long as everyone around her behaves. The second someone steps out of line she can’t handle it and feels she must control and correct the situation. Her environment must be silent or she has to wear headphones. She is extremely bright but cannot finish tasks because everything must be perfect – she will erase her writing 30 times before she is satisfied with each word.
My son – doesn’t want to be told what to do so he ignores attempts to get him to do work. Sometimes he will become extremely upset with a routine even though the routine is the same it has always been. He does not understand jokes, puns or sarcasm and is often upset believing people are making fun of him when it is not the case.
My kids need after school care separately. My son must be one on one so direction can be changed at any time based on his behaviors. He won’t do his homework because he hates to write. Won’t even write one letter or number.
My daughter is so exhausted by the time we pick her up from school that she often falls asleep through supper only to become obsessive about something in the middle of the night.
She will inevitably come home with writing all over her and all over her clothes. She can’t seem to control it. I have watched her and it is almost an autopilot thing – if it is in her hand, she is using it. That goes the same for anything – if it is sharp she will be digging at herself with it. She goes through stuff by the truckload – rolls of tape – 10 rolls at a time; rolls of string or yarn – 5 rolls at a time; toothpaste – 3 tubes in one attempt to brush her teeth; shower – every bottle of shampoo, conditioner or body wash she can get at.
My son collects everything! I have to sneak it out of his room every night while he is sleeping. Boxes, cans, bottles, rocks, worms, pine cones – anything! He will have a meltdown if he sees me getting rid of it during the day but tolerates me getting rid of it while he is sleeping.
No one ever wants what is on the menu for supper. And unlike homes where “they will eat when they get hungry” – I can assure you – kids on the spectrum can hold you hostage for a great deal longer than the normal child. They will truly put their health in jeopardy before caving to societal expectations.
We can no longer do Girl Scouts – the noise is too much for her to handle. We no longer do many group activities – too much for the kids to navigate through the noise, chaos, stimulation and more.
My son will have had at least one potty accident yet refuses to shower – he will eventually get in the shower but after he asserts his control.
Then bedtime – he is not going to bed; you can’t make him go to bed; and he will make sure of it. Yet he goes to bed and naturally falls asleep. The answer to anything he is asked is always “no” – but in the end he almost always does the right thing. Just ignore the “no’s”.
Once they go to bed I start my work that I brought home, my blogging, exercise if I can come up with the energy, dishes, laundry, cleaning up their path of destruction, taking care of the animals and giving them some “me” time. Then go to bed around 1am and start again anytime between 4am and 5:30am. Except for rare occasions – don’t ask me about a certain television show – I have probably never even heard of it, much less seen it. Although I do like Person of Interest and Big Bang Theory.
This is a day without anything unforeseen happening and there is always something thrown into the mix just to see how we will handle it. I don’t go visit out of state family, I don’t go to many work related affairs that require travel (even in state because I won’t be able to get to my children’s schools in a reasonable amount of time) and I definitely don’t attend any blogging affairs. My friends seem to understand but family much less so. My family doesn’t see the daily issues and struggles so it is hard to get them to understand. My friends are more intimately aware of my daily schedule and the unique needs of our kids.