Your child was newly diagnosed with autism? Maybe don't read this...

For some reason, I started looking today at various fact and advice sites for those with a child newly diagnosed with autism.  It was strange---although it's been 8 years, I still felt panicky reading the information there, feeling like I wasn't up to the challenge and I was going to do everything wrong.  It took me back, and in a bad way.  So I thought---what would I say?  What would I advice?  And then realized what I'd have to say might not be the best thing for someone to read that was new at all of this.  Maybe the busy lists, the lists of tons of people to call or books to read or therapies to research are the best way to handle the early days.  Maybe it's better not to think too much, and rather to take action.  But here's what I'd say, and if you really are in the early days of a diagnosis, think twice before you read this, because I'm going to be brutally honest with my five talking points.  Not brutally negative, but brutally honest.

1.  There is no way to say right now how this will all play out. Your child might be one of the super-achievers.  There might be a day, years from now, that they pull down all As from a fancy college while carrying a part time job and having good friends.  Or...they might never progress much at all.  They might even regress some.  They might never learn much more than they have learned right now.  I had one of each of those.  The very high achieving child was probably misdiagnosed, but then again, maybe your child was too, or maybe mine wasn't, and was just someone destined to progress.  Don't let anyone tell you what your child will do, although knowing that you don't know is a mixed blessing.  I read a book once about girls with autism that said something along the lines of "Girls with autism have an incredibly bright future ahead!"  That line makes me mad every time I think of it, because for many girls (and boys), it's a lie.

2.  Your life is not going to be what you expected.  I'm not going all trip to Holland here.  It's not going to necessarily be better than you expected, but then again, it might be not worse.  It's just not going to be the life you pictured.  No life ever is, but yours...more than most.  You will live a life of IEP meetings and meltdowns and special interests and sleepless nights and desperation and pride and laughing and crying.  Not all at once, and not all of those maybe, but you'll have highs and lows higher and lower than most.  You've been taken off the mainstream track and moved to a different one, one that isn't going to take you where you expected.

3.  Everyone will tell you that you are going to have to be an advocate for your child.  Don't let that terrify you.  It will come naturally.  Not everything has to be a fight.  You will be pleasantly surprised how many people truly want to help you, and are kind beyond anything they need to be.  If you don't feel up to a battle over some issue, it might be that issue isn't worth battling over.  I am the least confrontational person I know, pretty much, but even I find when the issue is important enough, I can do quite a battle, and you will too.  The one area I do want to say you MUST ALWAYS SPEAK UP is for medical issues.  If you KNOW your child is very sick, and they aren't getting the treatment they need because they can't communicate well, SCREAM if you have to.  Your child's life may depend on it, as Janey's life did with her appendix crisis.

4.  Figure out a way, some way, to enjoy yourself even if you can't leave the house.  Because a lot of times, you aren't going to be able to.  Finding respite is near impossible, at least in the United States.  So you might need to mentally escape when you can't physically escape.  Get into something like online games or gardening or knitting or sewing or working out to music or whatever floats your boat, but make it something you can pick up and do whenever you have a moment.

5.  Enjoy the good moments with your child when you can.  There are going to be very tough times, but believe me, there's going to be a lot of fun, too.  There's going to be times your child does something you never thought they could, or says something incredibly funny (whatever way they communicate) or gets so into a song or a video or a book they laugh so hard and dance so hard that you can't even help but laugh and dance along.  Don't feel like you have to have "normal" fun to have fun.  Don't ever feel like the things that delight your child should have to be "typical".  Typical is overrated.

I said five things, but here's a sixth.  It gets easier.  It really does.  It might get tougher before it gets easier, and it might swing back to tough for periods of time after it gets easier, but there is going to come a day when life feels under control again.  When the nights are very, very long, when you have been bitten and hit, when you are cleaning up a diaper mess for the hundredth time, when you want to fling something at the TV when they say it's a snow day, when you despair----please remember it does get easier, and feel free to post a cry for support on the Facebook page that goes with this blog.  We have all been there.  We have your back.  I am thinking of you, about to start on this journey, and I send my love.

"A Good Mother Would Never...."

Like many mothers, I have an idealized image of a good mother in my head.  In my particular case, it's the autism brand of good mother.  The autism good mother is endlessly patient.  She completely accepts her child's autism, while at the same time doing everything in her power to help her child live in the world.  She constantly seeks out therapies which would help her child, yet at the same time makes sure her child realizes they are perfect just the way they are.  She is careful with diet, with tone of voice, with IEPs, with toys, with TV watching...with everything.  And the one thing she never, ever does, of course, is yell at her child.

We all know the good mother is a myth, but I think many of us still strive to be that myth.  Part of it is what we read.  Those writing about parenthood, without maybe doing so consciously, paint themselves in the best light possible.  We might jokingly admit to small transgressions "I put on a video just hoping she would leave me alone for a while!  I gave her soda for breakfast!  I dressed her in yesterday's clothes again!"  But we don't talk about the moments that are not funny, not silly.

The other night, I yelled at Janey.  I really, really yelled at her, loudly and angrily.  I feel awful about it.  I'm not a yeller.  I don't lose my temper often.  I can only think of a few times in my life I truly lost my temper.  That's not a result of some wonderful self-control---it's just not in my nature to get very angry very often.  I get depressed instead, or silent, or secretly seethe internally.  But this time, I really yelled.

The setup was this:  Janey had come back from a ride with Tony.  I took her to the bathroom, as we do after a ride.  She didn't use the toilet.  I asked her a couple times if she was sure she didn't need to go, and she repeated "sure she didn't need to go!"  Then she wanted to cuddle on the bed.  As soon as we got on the bed, she looked at me, smiled, and proceeded to wet the bed all over.

For more background, this was the 5th or 6th time in a row that exact scenario had played out.  I'd take her to the bathroom, she wouldn't go, and then she'd go straight to the bed and wet it.  I had spent the last many days washing blanket and sheets.  She won't leave waterproof covers on---in her eyes, under the covers usually means straight on the mattress.  We got a new mattress, badly needed, a few months ago.  We can't buy a new mattress every month.  

So, without stopping to think, without taking into consideration all the things I want to have taken into consideration with Janey---that she might not understand what I have said, that there might be sensory reason for her actions, that she truly might not realize she had to go until she's on the bed, that she prefers to use the bathroom totally on her own and not be taken by me, that the reason for her actions might be something I don't understand at all but that in her head is totally reasonable---I yelled.   I said "You stop that!  You go in the bathroom right now and use the toilet!  YOU CAN'T KEEP PEEING ON THE BED!!!!"

Janey's response?  She laughed.  After a while, she did get the message that I wanted her to go into the bathroom, and she went.  I lay there, angry and wet and just plain tired of it all.  It took a few minutes for the guilt and sadness to set in.  I don't want to be like that.  I don't want to yell at Janey, or have anyone yell at her.  

A part of me does understand that even a saint would sometimes lose their patience with Janey (or with almost any kids, at some point).  I do know that it's likely that every parent on earth has yelled at their kids once or twice.  But still---I wish I hadn't yelled at her.

When I calmed down, I told Janey I was sorry.  I told her that again the next day, and the next.  I washed the blankets and sheet again.  I put down the pads again, and hoped she wouldn't move them.  I told myself that her progress with toilet training has been great lately.  She has worn underwear to school for months, with barely an accident.  She almost never misses with "messy" toilet needs.  She uses the toilet for urine at home much of the time, and she prefers underwear to pullups now, and we even take her in the car in underwear.  The bed issue is something we need to work out (for daytime---I don't imagine she'll be out of pullups at night for a long time, if ever), but overall, she's doing well.  

In some ways, there is good in the Good Mother ideal.  It's something to aim for.  But none of us are going to always be that Good Mother.  However, most of us are smaller case good mothers, indeed.  We love our kids.  We try every day to do the best we can for them.  We aren't perfect.  But especially for those of us with children with special needs, we need to take the Good Mothers we read about with a grain of salt, and to keep just being the good mothers we are, and supporting each other in that sometimes incredibly challenging task.

The day it all hit me

It's funny how the mind and body work when you are in the middle of a crisis.  There must be some kind of system that kicks in that lets you keep going when normally you would have collapsed on the floor, overwhelmed.  That system was in high gear from last Friday until yesterday.  It's not that I didn't cry some or feel exhausted, but I was functioning.  Last night, the system wore out and I was hit hard.

I was okay yesterday morning.  I did housework and laundry and dishes, enjoying the feeling of doing everyday work again.  We drove to Providence to see Janey midday.  Freddy came too, to see her in the new hospital.  The drive went quickly---we are figuring out new routes to take, and it's a pretty straight shot to drive there, although a long straight shot.  We are starting to know the routine, how to check in, what not to bring into the hospital, where the long locked halls lead, all that.

Janey looked well cared for, which was great to see.  Her hair was clean and brushed, and she was dressed in her nice clothes.  She seemed much quieter, calmer overall.  We visited with her in her room, as we are required to do.  She seemed happy to see us.  We brought her her toy Olivia and Beanie Baby style My Little Pony, and we played with those a bit.  Then I sang her some Christmas carols, letting her choose what I would sing next.  She looked at me with the look I only see when she is totally overcome with music---a look of wonder and amazement, as if she can barely believe the perfection of the songs (not my singing!)  When I sang "O Little Town of Bethlehem", she kept repeating the line "yet in thy dark streets shineth" and I sang that part over and over.

After a while, she was getting restless and started asking for the kind of things she asked for in the hospital, over and over..."Want to take a shower?  Want to watch Olivia?  Want bacon?  Want take off socks?"  We realized it was probably time to go, before she got more upset, and we told her we were going to say goodbye.  She said "Put on shoes?  Go to Mama's house?"  If there is a moment when a parent has their heart broken, that is it---when your ten year old daughter, in a locked psychiatric ward, asks for you to take her home.  I hope I never again feel what I felt that moment, and I hope none of you ever have to feel that feeling.

We took her back out to the ward---the area they seem to spend weekend days in, outside her room.  I won't write much about the other kids there, because it is not my story to tell and I respect their privacy, but I will say Janey was the only girl I saw, and also the only child that seemed to talk.  She stood out, as it feels like she has done all her life.  I wish so much sometimes I could gather all the girls together that I have met through this blog, that we could get our girls together in a room so Janey for once could have peers like herself.  Maybe someday that can happen.  But for now, it so often feels like Janey is very alone.

After we got home, I did mindless things---watching some Star Trek, reading, knitting.  Tony was working on a long, long application we have to do to try to get state supplemental insurance for Janey, to help with the bills that will soon start rolling in.  At one point, he asked me for a little information for the form.  I found I couldn't answer.  I couldn't think.  I couldn't put together simple sentences.

Tony quickly realized what he was dealing with.  He stopped asking any questions.  He made me some hot chocolate, and then, a French bread pizza.  He comforted me as I collapsed into my bed, crying and crying.  I am incredibly lucky to have a husband like him.

Later, my rock of a friend Maryellen called me, and we talked for an hour.  She listened to my teary account of the visit to Janey.  That is so important---to have someone I can pour my heart out to, someone outside the family but still very connected.  I am so lucky in the support I have, from friends like Maryellen, from my family and from my extended blog family.  I truly want you all to know that---how much you all have helped.

Today I feel stronger.  I am sad we will probably not visit Janey today.  The Patriots play in between where we are and where she is, and traffic back and forth becomes a nightmare.  I would not let that keep me away, but I think also Janey might need a day without the confusion our visits seem to bring.  I hope I am right there.  I know she is in the place she needs to be, but I miss her so intensely.  It is not the normal course of things to have your little girl so far away, literally locked away.  My life has taken a turn which is often feeling surreal.  I need to get through this.  I think today, I will retreat to gather strength for the next round, to go on and keep on fighting.

Should I even be writing about Janey?

Lately, I've read a few blog posts and articles that question the whole idea of sharing thoughts and stories about parenting an autistic child.  The gist of them is that it's not our story to tell as a parent---that someday, Janey may want to tell her own story and that she might not appreciate what I've written about her childhood being out there in internet-land.  It's a very valid thought to consider, and I have been thinking about it for a few weeks.  I've concluded that I think it IS valid for me to write about her, and I'll give my thoughts and reasons.

The first thought I had, to be honest, was that Janey will never be able to tell her own story.  I hope I am wrong there.  I hope that Janey does learn to read, to write, to be able to tell me her take on her life.  I hope that extremely much.  But I don't think she will.  I know there are non-verbal people with autism who do communicate very well, through writing.  But I don't think Janey will be one of them.  It's not that I don't think she would ever be capable of that, although I do have my doubts about that.  It's more that she is not very focused on written or visual communication.  She's an auditory person.  She talks probably more than would be expected for someone at her level of functioning in other areas.  She listens pretty well.  She seems to have vast, vast stores of auditory memory---songs, lines of conversation, full movies.  But she has resisted most any attempts to convert this knowledge into written form, or to use a visual communication method.  So maybe she'll dictate her story?  I don't think so.  I haven't ever really heard of an autistic person who was minimally verbal in a truly communicative way at Janey's age who then became verbal in a way that could tell stories of the past, or give perspective into what is inside her head.  I hope I am wrong there, but I honestly don't see Janey being able to tell the world her own story.

Next, I had to consider WHY I write about Janey.  There are two major reasons.  One is to keep myself sane.  Writing is my release, my way to getting through the days, of working through my own thoughts, of being able to face the future.  Quite selfishly, I need to write.  Less selfishly, I need to write to be able to be strong for Janey, and for the rest of my family.  I need to know I can sit down here at the computer and write about my life and Janey's life.  Without that, I think I might give up.  That's the ugly truth.  The other reason I write is to provide support to others with children like Janey.  I think over the years, I've done that some.  I've had people tell me they feel far less alone after reading my blog.  I've had a few people tell me that I helped them go on after tough times.  That means the world to me.  I don't advertise my blog much, and I'm not part of the larger blogging world.  I am not good at that kind of networking.  But somehow, over the years, people have found this blog and have told me it's been helpful to them, and that is absolutely one of the things I'm proudest of in my life.

And so here we get a bit of a vicious circle.  I write about Janey so I can continue to parent her---so I can have the strength I need to be the best parent I have to her.  I write also to hopefully, in some small way, give strength to other parents.  Raising a child with autism is not easy.  I don't think even the most positive parents would say it is.  And raising a child to reach their maximum potential, to maybe someday be ABLE to tell their own stories, is even harder.  We need all the help we can get.  We need support from others that truly understand.  We need to know there's an outlet for all the feelings that this tough parenting gig brings up---sadness, frustration, sometimes anger, sometimes despair and sometimes, yes, extreme pride and happiness.  We need that connection.  Without, I know I couldn't go on.  So in order to give Janey the best chance at a full life, and the little bit of a chance she might someday be able to tell her side of the story, I NEED to tell mine.

We all make mistakes as parents.  If anyone thinks they don't, they are probably making more mistakes than most.  So, if writing this blog is a mistake I'm making, I'll take that chance.  I'll take the chance that Janey will come back some day and hate me for writing it.  If that happens, I will accept that, because writing it would have helped me help her get to the point where she could express that.  I'll keep writing in the hopes one day Janey can tell me if I did the right thing or not.

The Club

As I was walking Janey into school for her last day of 1st grade, I saw a boy I've known since he was a baby, looking very handsome in a suit, getting ready for 5th grade graduation. Then I talked to a mother of twins about her summer plans. After I dropped off Janey, I saw the old principal of the school, and had a good talk with him about the boys. As I was walking to my car, I talked to a few other members of the school staff about their kids. What do all these people have in common? They are all members of the club---the club of those affected by serious disabilities. From the boy with Down Syndrome to the twin in a wheelchair to the principal who is blind, they all are members. And today, for one of the first times, I had a feeling of pride in also being in that club.

Of course, in a lot of ways, pride is a strange thing to feel. It's not a club anyone tries to join. The membership fees are incredibly high. The initiation rites can be life-threatening, heart-wrenching. The meetings don't occur often enough to keep members from feeling incredibly isolated at times. There are not a lot of facilities for us, not a lot of perks or parties or benefits.

But it's all about the members. The members I have met are some of the most remarkable people on this earth. They have struggled for everything they have, for their children or themselves. Contrary to what many would think, they are also funny, happy, cheerful people much of the time. In the popular text talk of today, they absolutely get that YOLO (you only live once). They don't feel sorry for each other or for themselves, for the most part. But they get it. They get each other's lives. They celebrate each other's triumphs, and cry each other's tears.

As I talked to the people I talked to today, I realized I didn't talk to any of them about disabilities. We had some laughs, talked about summer plans, said some goodbyes, caught up. I left the school feeling as I often do after being there---on a bit of a high. As I saw yesterday, not everyone in the world gets what our club members go through. There are many that aren't in the club that do, and in fact many of them, especially the teachers and others that work with our kids, are more than honorary members. But like all good clubs, we have our rivals---those who make fun of us and ours, belittle us, are annoyed by how we might change their routines or talk oddly and loudly or just plain remind them of something that for some reason they don't want to be reminded of. That's part of being an exclusive club, I guess.

I'm not going all "Welcome to Holland" here. If I could go back and refuse membership to the club, I would. But membership, once you are chosen, isn't optional. I'm a lifetime member, and there's nothing I can do about that but be proud to be in a club with some of the most amazing people in this world.

Moral support

The other day, I was at my wit's end. Janey had started the day with screaming, and by noon had worked herself into a huge screaming festival. I was tired, the kind of bone-weary tired that I get on days like that. Summer was looming ahead as two months of shear hell. And suddenly, I realized what I must do. I called my friend Michelle. We'd talked via email a lot, but never over the phone. She called me back after I left a message, and BOOM---what was a horrible day turned into a red-letter day. It was WONDERFUL to talk to someone that understood, someone with an autistic daughter of her own, someone that just got the feelings and frustration and emotions of the life I'm living. I am blessed with many wonderful friends, but I don't think anyone except someone else who has lived this life can really, really understand.

And that's one thing that's wonderful about the internet. I would not know her in "regular" life. I can't imagine being a special needs parent before the internet existed. It came into wide use the same year William was born, in 1994, and from that time on, it's been there for me. And of course, the internet is not an entity on its own. It's people---people that reach out to others and to whom we can reach out, and realize we are not alone, not at all.

I have read a few great comments on this blog lately. That means a lot to me also. I write this mostly as a release---a place to go to when I need to say things that I don't have another place to say. But when I realize that it's helped others, either by telling them that others feel they way they do, or by sharing with people who would not otherwise know what life with autism was like, it's a huge boost. I want to be able to do that---to let people know they aren't alone, to tell what in my eyes is the truth about autism, the good, the bad, the terrible, the funny---not a syrupy rainbows and unicorns view, or a view that advocates a certain strict regiment, or a judgemental view, but just my personal view, which I all I really have to give.

And how is Janey lately? Well, summer is not easy. She is adjusting a little, I think, but then will come summer school and a new challenge. She has another loose tooth and it's bothering her a lot. She has had a few huge sprees of getting into things when I got lax about bungee cording the fridge. She loves the wading pool, and that is a saving grace. We'll get by, for now. With a little help from our friends.