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.  

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.

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.

This Sunday I will meet with 8 of my favorite ladies in the world. Each year, for the last 6 years out of 12 – we have been getting together for dinner or lunch to reminisce, get the updates about kids, etc. How do I know these women? When each of us had our first babies in 1999, we were grouped together by Beaumont Hospital in the suburbs of Detroit. It was called a “playgroup”, and our first meeting was in July of 1999. (Each of our babies were from 3-5 months old.) We started meeting every other week at each of our houses, sharing milestones, stories and just generally enjoying each others company. We were all first time moms, and things were so new…it was nice to share in those experiences with such a great group.

Sometimes I joke about living with Phoebe, and her autism. Sometimes you just have to laugh, because there really is no other way to cope. There are days I feel as though I am living in the movie “GroundHog Day.” Autism is very routine, and very structured (so they say).

Turns out having presents out for the kids from mom wasn’t the greatest idea after all. I thought maybe this year it wouldn’t be a source of “obsession”. I haven’t done this in the past- and thought it should go well. Who am I kidding? I think that I have heard…”Can I open a present?” at least 500 times in the last 5 days. I just keep reiterating that on Christmas they can open their presents. If you give them the tools- they’ll know what to do right? HA! Doesn’t matter how many times I have answered this question- I still get it at least every hour- if not more. I even get the stare down- as if she is trying to figure out a better way to ask. Brendan has only asked 100 times- and he finally stopped asking. When I told him about the man at the Soup Kitchen who was more than excited, and grateful to get a “goody bag” filled with an orange, some snacks and a card, Brendan stopped asking. (Hence, he gets the idea) Phoebe seemed less than impressed with the story- ending with…”so does Santa come both Christmas eve and Christmas day?”

I must first start off writing that recently my ex took Phoebe to see a “Behavioral Psychologist” that we both agreed might be a good idea. For once, I did not attend the meeting- and let him take her. We were looking for help on medications and how to treat behaviors and deal with them on a daily basis. Maybe, just maybe, this doctor would have something profound to say. The visit was in October, and I received the report on Friday. It was one page, and then attached to this one page were copied documents on how to give Time-Outs, use 1-2-3 Magic, and another common method for behaviors. Not to sound condescending, but REALLY??? The report was on how we need to implement these strategies. I’m not a genius, but I do have a degree, and have been dealing with THIS child for 12 years now. You don’t think I’ve tried this? Time-outs have never worked with her, as she has the attention span of a flea, and 1-2-3 Magic was comical as she would consistently wait until I got to 3 to even attempt to do what I was asking- making me look ridiculous. I am not sure what I expected, but I guess I wanted this doctor to look at OUR daughter and her case, and then come up with a few ideas. If he couldn’t, I would have been more impressed with a suggestion of..”take her here”, or “we don’t really know.” As a parent of an autistic child who has been to Yale Autism Clinic, Central Michigan Behavioral Clinic, 2 Psychologists, 2 Psychiatrists, a Neurologist, and Endocrinologist, a Pediatric Gynecologist, and an ABA Therapist – to name a few…I think that I must have the answers, and it’s time that I figure out what works best for her on my own. There is no exact answer when the spectrum is as large as it is.

The Holidays are a wonderful time. I have always loved being around family, laughing and having fun during the Holidays. While I grow more patient at Holiday time…Phoebe grows much less patient, and much more anxious.

I get this question a lot…”Is your daughter higher functioning?” How do you answer that. Today, she was higher functioning because she only asked me for pretzels 60 times rather than 50. However, yesterday she had a meltdown at 3 a.m. when I refused to give her salami. So, I guess that would be a lower functioning day. To this autism mom, she is what she is. She is verbal to a fault, and can use words correctly in most situations. Does she always know what she is saying…I don’t think so. Then other times- oh yes she does.

Phoebe has a weird memory. She can memorize names, addresses, and pet names. If you know her…you know what I am talking about. In the first grade, her teacher (love her) told me after the first day of school was over that Phoebe had sat on the playground on a bench. When the teacher asked her what she was doing, Phoebe began to point at the children and say their names…one by one. The teacher had never read the class list, nor did she even know the names. Phoebe must have seen them….and put them to memory.