I’ve been so busy dealing with school and addressing Stephen’s educational needs – I didn’t get a chance to write or post anything last week. Dealing with school is one situation where I feel as though everything I say or do is judged without the administrators who are making the decisions knowing the facts.
I’m a little bummed out to have so little time with family this summer. Summer is the time of year I look forward to. This year we will be cooped up in our little apartment for 6 weeks – just so that Stephen can attend day camp for 3 hours a day 4 days a week. I’m not sure that attending the day camp (provided by the school district as a reparation for services that were not provided) is in Stephen’s best interest.
We’ve decided to give it a chance, and alter our plans as we see fit along the way. What about potty training? We specifically asked for the school to continue with potty training while he’s there. The district ignored our requests on summer school and potty training. Is 3 hours a day at a summer program more valuable than the independence he will gain by being fully potty trained at age 7? I’m wondering how much of the 3 hours a day Stephen will actually participate, and how much of the time he will just be waiting for mom and dad to come get him…
When is it ok for parents of special needs children to ever have a bad moment? Somehow all is documented in your mind, as well as, in other people’s minds. There’s no way that being angry where dishes are shattered, doors are slammed and a long drive away from it all are approved and seen as a way of release and not a permanent way of life. Sobbing uncontrollably. Living in isolation. Dressing in clothes of woefulness. Breathing the air of no hope. Sad songs on instant replay. Your mind becomes a nomad, wandering from confusion to disbelief to what? to why? to how? and never resting long enough to land at one spot. And to add weight to your worry, there’s the sting of onlookers. The ones who portray a life of perfection and make it their mission to be that constant reminder that your life is not perfect. Not only do they frown at…
I’m writing today because I believe writing is therapeutic. After all if you don’t like it you don’t have to read it. (I do hope you’ll like it.) The written word is unlike the spoken word. With the spoken word, I don’t want to hear it just doesn’t work.
So when a teenage single mom texts at 2:22 am and says,
“I ran out of diapers and he pooped help!! ”
I’ve been very busy this past week and I haven’t had much time for the things I enjoy and want to do most. The Reason? Well, it could be Fairy Godmother Syndrome. Is that a real syndrome you ask? It sure is!
Yesterday we got hit with a snow storm here in Connecticut and our 4 day long weekend was extended to 5 days. So we got a jump-start on our Poopy Valentines Day plan: potty training my 7 year-old non-verbal autistic, special needs son (see my post Help! My Valentine Smells like Poop! ). It was a rough day – to say the least. We didn’t make it even 5 minutes between wet underwear, but Stephen did manage to pee on the potty 3 times in one day (a record number of times in a row.) It’s a start and I keep reminding myself A long journey begins with the first step. After 8 hours of potty training my son was so exhausted he got into bed (my bed of course) an hour before bedtime.
I was too exhausted to send him to his own bed. Some days I just need to choose my battles. Yesterday was one of those days. I washed dried and folded 3 loads of laundry, pre-washed poop out of his underwear by hand, and basically got nothing else done during the 5 minutes between “dry checks.” I had a battle of the wills with a 7 year-old, my patience was wearing thin, and I said, “There’s no way I’m going to change your diapers until you’re 35 – so you may as well learn now!” Not one of my best parenting moments – nothing like making a stressful situation worse.
Stephen pooped in his underwear while I ate my breakfast at 2:00 pm, so there was no way I was going to make dinner. My wonderful hubby not only shoveled almost all day, he also helped out with the “positive practice” routine – back and forth to the potty going through the motions 5 times in a row for each wet accident. He may have done it reluctantly (and not without complaining) but he was still a big help. At 8 pm we hadn’t had dinner (my son had a sandwich on gluten-free bread but as always mommy and daddy come last.) So (big – a.k.a – tall) Steve, my hubby went out in the cold to pick up some carry-out.
At 3:30 am the carry-out wasn’t agreeing with me and my mind was racing. I opted to make a to-do-list and an ideas list to help me relax and put it out of my mind until morning. By 4;30 am my son was up and out of his own bed again, so I sent him back in to my bed. I woke up this morning with a stiff neck (not entirely unusual for me – at 36 I already have arthritis in my neck that shows up on x-rays.)
So today I resolved to have a better day, knowing I had an unexpected jump-start on potty training and we’re still ahead of schedule (at least in my world we are.) I promise myself I will remain calm as I tell my son that when he has that “need to go potty feeling” to “STOP what you’re doing and GO to the potty.”
'And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don't believe in magic will never find it.' Roald Dahl
A blog dedicated to my personal research on intellectual and developmental disabilities. In order to highlight issues affecting people with developmental disabilities and debunk stereotyping myths, the first step is to become informed and spread awareness through visual storytelling and facts. (Dedicated to my older brother, Doug).