The slow slide in to summer

I know.  It's only the end of February,  however I start my annual plight to find summer programming for my daughter.  For my "normal" son, it's easy to find day camps, and fun things to do.  For kids with PDD-NOS, autism, or anything like it...this area has nothing.   I am not exaggerating...there isn't much here for a 13 year old, too high functioning, not functioning enough, too big child - to do.  There can't be anything worse than summer for my kid.  The structure is gone, and the schedule is messed up.  She is, dare I say it, AWFUL in the summer.  Summer used to be a time of relaxation, beaches, fun, and vacation.  For this family, it's a serious cause of emotional turmoil that starts now.  

Most 13 year old children would be able to stay home for short amounts of time at that age.  This does not happen for those of us with kids of special needs.  I am not sure she will ever be able to be alone, and I don't say that lightly.  It scares the heck out me.  Someday, her brother will be able to stay home with her, but I am not even sure I could place that burden on him.  He takes on the weight of the world already, and I am going to try and lighten his load as much as possible as he grows up.  

You can't imagine the cost of trying to get someone to come watch your child for long periods of time.  Last summer, while I was working in a job I hated, I spent close to $200 per week for her.  (and that's pretty cheap!)  This brings me to my original thought of why there isn't more programming for kids like her.  With the statistics growing every day...there seems to be a growing need for summer programs.  She is somewhat functional in school, and has the capability and the need to learn.  She loses more ground than any "normal" child in the summer.  I have tried to think of possibilities for her, and even tried to come up with a plan for day-care.  To be honest, I can hardly take a stinking shower, get dressed, tie my shoes, or blow my nose without her needing me, so making big plans like that is just not feasible.  

So today it begins.  Today begins my annual search for something for this child.  With the constant need for attention, this momma will need some breaks from the daily ASD world of Phoebe.   I will find something, and hopefully I don't have to sell my soul to send her.  

The Ugly Side of Autism

Today, I got that email. The email I get every 6 months to a year that tells me my daughter's behavior is out-of-control. She kicks desks, calls people names, picks at her skin, threatens herself and others, etc. What do you do as the mother? The only thing you can do is feel guilt, and embarrassment. Whether the behaviors are intentional or not, is irrelevant, because they are happening. And, as the mother of this child...you are appalled, and overwhelmed with so many feelings of disparity. The questions begin... Is it puberty? Maybe. Is it Autism? Yes. Is it her age? Maybe. Is it her meds? Probably. Is there a change to her schedule, her home life, her family?? No. (Not that I am aware of) No sooner do I think she might be doing ok--I get my reality check. It's that middle of the year, knows the routine, knows how to get out of work, thing that she does every year. So, we meet as a team, and come up with behavior strategies, and hope for the best.

We don't live in Ann Arbor, or near a big, fancy autism clinic. We live in Saginaw, Michigan. I have exhausted all Psychiatric ideas, and am feeling at a loss. Even her pediatrician recently said, "you may want to take her somewhere else." Good lord, it only took me 5 years to get her used to him!! Are you kidding?? No one wants to help a child with mixed diagnoses. This child is clinically diagnosed PDD-NOS. Sounds fancy...right? Pervasive Developmental Disorder - Not Otherwise Specified. (which means...we don't know where to put her on the spectrum) We have tried nearly ever med we can think of for behaviors, impulsivity, ADD, and anxiety. What do I do next? I guess a visit to the University of Michigan Autism Clinic might be on my list next. They claim to have Psychiatrists and Psychologists, who know about PDD-NOS. It's only an hour away, and I'd have to go every few months to keep up on visits. Easy right? I'll fit that in between my 12 credits, dealing with my other child (oh yes, forgot about him:), trying to sub, keeping up with housework, homework, etc. (and yes...this is my venting blog) Sure- that's feasible!

With 1 in 100 children diagnosed with Autism - it seems like this (somewhat) large town, near Dow, would have a lot more resources. What is working for other kids with PDD-NOS? What isn't working? I plan to research and look in to new things. (In my spare time) I will go in to the behavior meeting with open ears, and ideas. I always have hope that these things will work. I want my daughter to succeed in whatever she does.

However, I'm tired. Tired of Autism. Tired of PDD-NOS. Just plain tired, and that's the ugly truth. Can you imagine what it's like to be her?

Tomorrow is another day.

Teenager-ness and Autism

In a few short weeks I will have a teenager. A teenager with autism. Having a teenager (as I have heard) is challenging enough, but having one with autism might just be the biggest challenge ever. I am not expecting huge changes, but I am wondering what the future will bring for her. This child will have the age, body, and look of a teenager, but the mind of an 8 year old. (at best) This "teenager" will still watch Blues Clues, and love football, UNO, and getting tucked in by her mom, and brother. She will also still scream at me like no other, hit things with full force, cry like a baby when I don't give her the food she wants, and tell people..."my mom smacks me a lot." I have learned to roll with her differences, and laugh when others are staring at her like she is an alien.

My biggest fear, and sadness, is that this teenager doesn't have a group of girlfriends, and it's what she wants most in life. She isn't texting friends and making plans for the weekend. She isn't getting 30 phone calls a night to talk about "stuff." She isn't talking about boy crushes, or who's dating who, or even what is popular or unpopular at school. She doesn't want to shop all day and hang out with me at the mall (all trivial, but likely with teenage girls) She does have mentors at school, and they are wonderful young ladies. They do things with Phoebe at school, and go on Community Instruction outings, as well. It takes a strong, and mature girl to want to help out a child with autism. (and I love these young women for doing so)

These things mentioned are traits that I am most likely to miss out on. (Maybe that's not such a bad thing?) I am not sad for myself, but I am terribly sad for her, as she wants what ever teenage girl wants. Friends. My job in the next few months is to facilitate this for her. I need to work hard to figure out how to get her involved in new experiences, and to find some friends. This will be hard on everyone, but crucial to her well-being (and mine).

I will continue to help her as best I can, and fight both autism and teenager-ness. I'll wonder which is worse, and wonder if I'll ever get through it. But, no matter how hard it is on me...it's way worse for her.