Can we say call DYFS?
Friday, April 15, 2011
It also hurts to find out that this family had been suffering a long time before making the painful decision to divorce.
Unfortunately, for a lot of families on the spectrum, you don’t have many options to turn to for help and consolation. Most families keep it all inside, not out of shame but out of the fact not too many people understand, including counselors. Unless you’ve been in the situation, you don’t understand the guilt that you deal with, on top of the stressors from having a child with a disability-and no real game plan.
If you have a child with Downs or CP, there are pretty concrete treatment plans. You see x specialist for this, you have this type of PT or OT or ST. You have a wealth of knowledge, research and options.
Autism doesn’t have that. I joke and say that autistic kids are like snowflakes-every one is different. It is true, and that’s what makes it so insidious to deal with. Add to it the fact that autism is the fastest growing disability, and there are a whole host of issues to contend with. There is a lot of gray areas in terms of treatment.
Gluten free diet or not?
Son Rise therapy?
All sorts of decisions to be made, add to it the fact that there are a whole host of what the medical community call co-morbidities. In my son’s case there are issues with chronic ear infections and chronic strep throat. He has issues with strasbismus (he was born with 2 lazy eyes which have been corrected with surgery, but one eye still drifts from time to time-especially when he is tired)He has had ear tubes put in and this summer will have a T&A. He has chronic sleep issues. As he has gotten older, he has gotten better about tooth brushing & flossing, especially when he had to have dental surgery to correct problems. In the grand scheme of things, this isn’t as bad as how some folks I know have it.
And that’s the rub. He’s too autistic to be considered normal or neurotypical, but not autistic enough for some more specialized care and treatment. For example, there is a miracle league baseball team here in town, and I thought that might be better for him to play on instead of a regular team (much less pressure, able to work on skills and being part of a team vs. winning and competitive). However, he wasn’t autistic enough to play since he doesn’t have an aide or certain adaptive needs on his IEP. Yet, the league thought it would not be a good fit for him to be on a regular team because of his disability.
Or the fact that he’s smarter than most other kids his age. He tested for the gifted & talented program, but because he was ill at ease with the tester and had some language deficits-he didn’t make it in. That’s the definition of autism in a nutshell. So, he’s not getting enough challenge in school unless I am constantly on top of things with the teacher-who this year basically told me its HER classroom and SHE knows best.
These are the little, every day things that over time build up. I cry in the bathroom some days because no one can hear me in the shower. My son has exceeded all expectations set for him originally, mainly because they set the bar pretty low and he’s a bright kid. He can do a lot more than he gets credit for, and he’s learned how to coast already.
Ive heard from other moms walking my path that it is a struggle. Every day presents new challenges, and new issues. Right now, my son doesn’t want to go to school, and it’s a struggle to get him up and going every day. He takes his time to the point when WE HAVE TO LEAVE, and he’s still not ready. So… I wind up screaming. If not, he doesn’t get motivated and then I am seriously late to work. Then I feel awful because I am screaming at my kid, who does not deserve a banshee for a mother.
However the commonalities, we are all snowflakes ourselves. It is I, Alone.
Thursday, April 14, 2011
Your liklihood of having a happy marriage AND an autistic child is almost non existent. Think about it, we basically have to choose between our child or our spouse.
So, another family has been torpedoed by an autism diagnosis, and living with it.
I am one of the lucky ones, supposedly. My son has language skills, he doesn't exhibit a lot of outward behaviors, and is in a regular class at school. It is wonderful, and I spent a lot of time when he was younger developing his social skills. But it is exhausting. Constantly reminding him what needs to be done, over and over, grinds on me.
This, I have since discovered, is common amongst spectrum mommies. Im sure fathers feel the same things, but its not as evident.
Spectrum mommies have the world on their shoulders, and believe me its pretty darn heavy.
People ask me how things are, and today is my time to tell them all:
I am tired and frustrated, most of the time. I try to convince my kid EVERY NIGHT that sitting down and doing homework is a good thing. I have to convince him into the shower, reason him off to bed. Daily. I cojole him to get dressed for school in the morning. I coax him out of bed. Its exhausting.
I am tired of going it alone, and its starting to show. I am tired of putting on a happy face all the time, and pretending that all is well in the world, because its not. The reality is, while I do feel in my heart, my kid is capable of anything he sets his mind to, he is limited by his autism. Kids are starting to notice that he is different, and its starting to show up on the playground. he says he doesn't like school because he is getting picked on. Its just going to get worse as he gets older. I am already starting to see him to be desperate to be liked, which inevitably will result in him doing stupid things to fit in.
And I am tired of pretending that all is ok. Its not. My kid will never be like your kid, and somedays frankly, that sucks. You can not give me parenting advice because you don't know what my life is truly like. That, despite my best efforts to do yoga and drink my sleepytime tea and practice aromatherapy massage and pray and meditate before bed, I actually just collapse into it.
I plan out my life to the most minute detail, because it gives me a sense of control while its all spiraling downward. So, if something deviates from my plan, it does set me off. Menu planning is my big thing...if I can get everyone to eat, I can pretend all is normal.
But what's not normal is the fact that my 8 year old can't tie his shoes, and buttoning a shirt is a challenge for him. He sees the world very differently and doesn't understand why everybody else isn't in love with hot wheels and angry birds as he is. He doesn't get that there are other rules for things, other than his and why does he have to conform to them?
Don't get me wrong. I deliberately chose this life and this child. I would give everything up for him and lay down my life for him. To me, there is no difference from the fact that I adopted him rather than giving birth to him. A mother's love is the same.
My prayer life has virtually disappeared over the years. Part of it has to do with the fact that the big man & I share different religious beliefs and actually belong to different churches. In my mind, its a little tiny cut every week when we don't go to church together as a family. I've gotten used to it over the years, but it still hurts. Just because you've accepted something doesn't mean that it isn't painful.
And talking with other spectrum mommies, this is all too common.
Wednesday, April 13, 2011
A disheveled man. A half filled coffee cup. A spiral notebook & a pile of papers. A counter in an empty diner, in the middle of the afternoon. Sitting alone, it was evident he wanted to be undisturbed. As long as the bored waitress looked up from her glossy magazine & kept the sludge coming, it was well. He was known as a good tipper, so his presence-however gruff-was tolerated, even welcomed. To an outsider, he appeared borderline crazed; but that was an illusion. A tragic snap judgement. The diner counter was his office, much as the wall street warriors blocks away had their corner fiefdoms. It was where some of most famous passages were written, where scenes had been blocked out. He diagramed scripts, much as his teacher/wife did to sentences with her classes. It was home, no movie magic there.
I will admit that I've been struggling a lot lately. My biggest issue, quite frankly, is me. I'm very much in my own head & its causing a huge issue for me.
I'm at a weight loss plateau. I'm not really gaining or losing. Ive got a bit of a pooch going on in my belly & I'm very self conscious of it.
A lot of just plain out tiredness in my house. Being physically tired. Emotionally spent. If a parent of a child with specialized needs ever tells you they are not drained at all, they are lying. Even though my son doesnt require additional assistance really, there are other behaviors that drain me.
He's currently obsessed with angry birds. Yes the game is addictive, but autism brings it to the next level. Especially at bedtime.
And theres this pesky nuisance called school. You know, this interrupts our play time, and we are really quite done with second grade.
So its a struggle most mornings to get up & out the door. I'm exhausted by the time I get to work, which just adds to stress, etc.
So...I need a change of perspective. I can't wave a magic wand & make all the tension & stress go away. I need to tecaliberate life.
Listing my goals, etc. Doesn't work in my life. Basically, I'm on my own with things. The big man is ready for bed by the time I get home from work, so anything I get from him is a bonus. I'm tired too, and sometimes I need to veg out. I may not have a physically demanding job, but there's a lot of mental, and some days emotional, stress & overusage between both my jobs....and at the end of the day I am still a wife & mother. Someone needs to scrub the toilets & put the laundry away.
So, I either go with it or step away.
I don't plan on going anywhere, so its option A.