Don't read this if you have a newly diagnosed child or if you don't like negative posts!

As the title says, if you are new to the world of autism, or if you are triggered by anything but positive words about living with someone with autism, please don't read this.  I have been thinking lately about political correctness in writing about autism.  There are things that aren't supposed to be said.  It's not that anyone says I CAN'T say them---it's more I self-edit what I write, but I do this to avoid upsetting people.  I don't want to discourage those with a newly diagnosed child.  Janey's course is not typical.  Most children with autism will make a lot more progress than her.  And I don't want to hurt the feelings of those people WITH autism who read this blog, because the ones that have introduced themselves to me are wonderful people, people I care about.  But after a tiring day like today...well, I kept thinking of a few things I want to say about life with autism, my particular life with autism.

1.  There are days your child is going to drive you crazy, make you cry, make you despair.  There are days that all the positive thinking in the world can't cheer you up.  Some days, you can be the autism super-parent.  Other days, you just can't, and you are going to just get through the day, however you can.

2.  Your child might never be fully toilet-trained, despite all the books and articles and advice and school interventions and timers and special underwear and everything you try.  Your child might be 10 and still in pull-ups.  They might actually pass from pull-ups to Depends type underwear.  I'm talking about you, Janey.  They might just never get it completely at all.  

3.  Your child might sometimes be aggressive toward you.  They might hit you, bite you, scratch you, bend your fingers, really, really hurt you sometimes.  There are many reasons for this, and I do understand the reasons, but when you are at the receiving end of a huge bite, you aren't thinking reason.  You are thinking pain.

4.  It's very easy to get your child evaluated.  It's quite easy to get involved in medical studies.  What is not easy to get is respite or help.  I could have Janey tested every day of the week, pretty much, and between the two insurances she now has, it would be covered.  But no insurance or financial help covers even one second of respite.  I could get people to come in the house, while I'm here, and help with Janey, mostly likely from what I've heard, but I'll say right here---that isn't respite.  That is not what I need help with.  That is like having company, company I need to talk to and entertain and clean up for.  That is more stress, not more help.  

5.  Your life gets very, very restricted.  I talked to a fellow autism mother about this, about how her non-autistic daughter might get a chance to be in a once in a lifetime performance, and all she can think about is "Who would watch my daughter (the autistic one) so I could actually go see her?"  I am thinking that currently about my son Freddy's high school graduation.  One night, maybe 3 hours.  And even that is going to be hard for both Tony and I to go to.  

6.  You will get in touch with the less kind parts of your own personality.  I feel resentment, sometimes, toward people with non-autistic kids.  I feel angry if I don't feel like they appreciate what they have.  I don't feel this all the time, but when I do, the depth of my feelings surprises me.  I don't want to be that person, but that person shows up, unbidden.  

Now, I could go on and on.  But I won't.  All the parts of life with Janey are not nearly this bleak.  I adore the girl, I can say that without a second's hesitation.  But life with her is hard.  It has wonderful moments, I have met so many of you wonderful fellow autism parents out there, I have met far more than my fair share of fantastic teachers and therapists, I have delighted in Janey's uniqueness.  But just saying those things is not speaking the whole truth.  I think about the emails I sometimes get from parents who are very, very discouraged, and I think part of that is the hesitation we all have to speak the other part of the truth.  It's a tough road we travel.  Although I have a near-compelling urge to not end on a negative note, I will, just this once.  It's a very tough road.

An evaluation

Yesterday we took Janey for an evaluation at a local hospital.  :The road to this evaluation was long.  I had gotten a recommendation from an ABA supervisor at Janey's school.  We were looking for a team that would work well with the Boston schools and Janey's school in particular.  The previous evaluation we had for Janey through our health plan featured a strongly adversarial approach to the schools, with the words "catch them in a mistake and then we've got them" being used.  I really didn't like that.  I love Janey's school.  I am not ready to move her to another school.  I believe in inclusion.  So I wanted to work with professionals who accepted that and would go from there.  My pediatrician took a long time to give me the referral I needed for this evaluation.  I can understand that some.  He is committed to the team their own health network uses, which I think he was part of setting up.  And the hospital we went to yesterday is what was once known as the "city hospital", the hospital of the poor and uninsured.  It still is that, to some extent, but that is not what is important to me.  I wanted a place where public education was embraced, not seen as something to get out of however you could.  Anyway...a long introduction to how we ended up where we were.

Janey has been in a super good mood lately, and yesterday was no exception.  I could tell she was a little nervous being in a totally new place, but she loved all the elevator rides and was happy in the cheerful waiting room.  When we got called in, she eagerly went with us.  The evaluation was done by a developmental pediatrician and a 3rd year or maybe 4th year medical student---whichever is what is called a "fellow", although they were both women!  And they were great.  Right away I got a feeling that they got Janey and us.  They seemed to have a sixth sense about Janey, and saw that she was taking in a lot of what we were saying as we did some background talking.  So often, I find that professionals talk right in front of Janey about big issues, including things like residential care.  They seem to not realize how much more Janey understands than she lets one, but these doctors got it.  They had done a great deal of background reading of all sorts of documents we and the schools gave them, and so we didn't have to repeat a lot.

They started the evaluation with seeing how Janey's academic skills were.  As I would have guessed, Janey didn't show much of any of them.  :She identified a "B", but that was about all---she wouldn't count, or say any other letters, or show that she knew her name written down, or anything.  She was cheery, but not interested.  So they pretty quickly switched to non-verbal stuff.  Janey easily did a shape puzzle, and sorted circles of different sizes and colors into piles, and separated spoons from sticks.  She worked VERY hard at some nesting cups.  The doctor took them apart and asked Janey to put them back in the nesting pile, and Janey kept at it for about 5 minutes and finally did it!  I was impressed with her determination, although I know that's a skill that most 18 month olds can do with ease.  But Janey kept trying---she would get them in all except one, and the one was too big, so she'd take them back apart and try again, sometimes trying to put them in upside-down or trying to push them hard, but she finally got it!  She lost interest in the evaluation after about 15 minutes, and they let it end there.

During the testing, Janey was showing her personality a lot!  She sang bits of several songs, and she did a couple echolalia phrases.  One was from "The Goofy Movie", and said something like "That will create bonding between a father and a son!"  The doctor saw how it tied in a little to things we had been saying about our home life, and was impressed, I think.

After the testing, the doctor said that although the literature says it's possible to accurately test the intelligence of kids with low functioning autism, she doesn't really think it is.  They are not motivated to show what they know in order to impress anyone, and they only will participate if they are interested.  I agree about that.  She said she felt like she had gotten a good sense of who Janey was, and I think she did.  And then she said something that meant a great deal to me.  She said "You know, I really like Janey!  She's a great kid!"  She said it in such a way that it didn't seem like a line, like something she said to everyone.  She said it like she had seen what we see, what people at her school see, that she is a pretty cool girl, an interesting person.  That is what was noticeably absent at other evaluations and medical appointments Janey has had---the sense that she was seen as a person, as a cool person, not just as a case to be figured out or a problem to solve.  I felt like hugging the doctor.

We got back next week to get the feedback about the evaluation (without Janey there).  I am eager for that.  I know basically how Janey stands---I'm not going to be shocked by anything I hear, but the big thing I was going for with switching to this team is having someone to work with for the long haul.  They said at the end of the appointment that they want to follow Janey as she grows up, to help us get the help we need.  And the doctor summed up in a few words what is is we want for help.  We want to be able to have Janey happy, to be able to enjoy her and have her enjoy life, to be able to have a home life that is happy for her AND for us.  That is exactly what we want.  We are not aiming for Janey to learn academics much.  We aren't aiming for her to be able to live on her own, or hold a job, or achieve amazing breakthroughs.  We want her to be happy, to enjoy life, to be a full part of our family.  That seems so simple, but it's so helpful to have pinned down just what we need help with.  And I feel some optimism that with this team and her school and our family working together, we can achieve that happy balance.

A few minutes later

I've given in to TV. I am desperate for a break. Janey is watching Sesame Street. I justify this by the fact she did say PBS Kids---she asked for TV! Sure. I am guilty all the time---about everything.

Everything is happening fast. I got a speeded up apointment last Sat. with a team of a psychiatrist, developmental pediatrician and speech pathologist. They all agreed---Janey is autistic. They think there is more, though. She might be having seizures. She might have a brain abnormality---she had an MRI at 18 months to try to figure out her late walking---she finally walked at 2. Her heart sounds like it's in the wrong place in her chest. We see her pediatrician today. I haven't seen him for over a year. This is partly because Janey is very healthy in terms of the usual things---no colds, fevers, throwing up---she is extra healthy. Also, I was having a year of denial. After Janey started walking, and was talking more and more, I decided she was fine. And she pretty much was---until a few months ago, when her talking took a nosedive and she started acting more and more oddly. She started preschool in September, not as any kind of special ed student but as a regular ed preschool kid at the inclusion school her brothers went to. She is in the same classroom her younger brother was in 7 years before. It didn't take long for the teachers and therapists in that classroom to realize they had a special ed kid hiding in a regular ed label there. I had hoped somehow they would never guess. Mostly because I hadn't let myself guess yet.

People all care. People have been wonderful the past few days. It helps a lot. However, I still feel very alone. They aren't responsible for Janey---I am. I am the one sitting here writing while she runs around the house saying "A pie, a my, a pie, a my, see, a lee, see, a lee" She loves rhyming. But it's not fun rhyming---it's instead of speech, not a great phonics tool to help speech.

I am tired of autism already, and it's only been 3 days.