Susan's Blog

Friday, July 6, 2012

It Gets Better

Riding along with Max today it struck me how happy I was. But this is typical when I’m on my bike (and with Max). Again and again, the wide open sky is my source of ecstasy. Going fast into the rushing air, or pushing up into it working so hard that my arms tingle at the summit — this is my element.

If you’ve been reading, you know this. But I mention it today because it occurred to me that I always want to be outside. I want to do as much as possible outside. I live for the hot weather, so I can be outdoors as much as possible (coffee on the porch, lunch on the porch, dinner on the porch or at an outdoor cafe). Riding, riding, riding.

Working, too. Now I leave. I am out of my house, in the world, teaching, speaking, traveling. I’ve even been involved in politics. I write controversial stuff. I’m out there, people say.

It was not always like this. When I was a young mother, I was inside. All of my hobbies were indoors: decorating, painting, sewing. I ran in place or did the Nordic track. I did not work outside the home. Even though I wanted to. One one hand I knew I couldn’t because I had the babies, Nat and Max, and I didn’t want to get daycare — not out of some moral issue, but more because I had no idea how you hired one or more importantly what my job was going to be. I imagined people working, and it was like a sitcom version. It felt unreal, impossible, far away. And far away is out there.

I didn’t want to travel. I dreamed of old trips I’d taken — out to the Northwest as a kid, to France, to Italy to Israel. I didn’t know how to do it anymore, in my late twenties, early thirties. Our only vacation was Cape Cod, safe old place.

I was so fearful. I remember being afraid, vaguely, of crowds, or stores. Of strangers, germs, sharp things lurking. I forced myself to go out, because I had small children who needed the outdoors. But I was so scared.

I was thinking about this as I rode swiftly downhill, a little scared but in a normal, thrilling way.  How different I am now. Like nothing can contain me. I go outward, and it’s not even enough. I now want to go away for my fiftieth birthday, alone.

Why am I writing about this? Because I just had to tell you that the scary alone shut-in days come to an end. You won’t always feel like this. Oh, I know you are not me, but in a way, you are. If you’re an autism parent, you probably know what I mean. (And before anyone screams and accuses me of blaming autism, just stop it. I’m not blaming our children, or autistics; but I am saying that parenting, especially with this particular disorder in the mix –  is tough to handle in one way or another and there’s no getting around that. It’s hard, that’s the truth. For our children and for us. There is so much unpredictability with autism in their lives, and thus there is so much unpredictability in our lives, when they’re young especially, so much worry. What might he do? Will he be unhappy there? Angry? Overstimulated? Will others understand? Will they stare? It’s very, very hard and we love them and those two facts exist side-by-side.) How will he be when he’s older? Should I be doing more to help him? Sweat, sweat, sweat. So much effort and stress. I just wanted to go to bed. Or at least just stay in my house, eat, and watch TV.

Sometimes it’s easier just to stay indoors. So do it, if you have to. I’ll tell you what: stay inside, but when you feel stronger, go out. It doesn’t last forever, you eventually figure it out. Just like them. Because here’s the thing no one is really talking about it — our guys, especially our guys, seem to blossom as they get older.  Not only is Nat’s adult life not a dead end, it is a beautiful beginning. And I am giving you this sugar (coat)-free.

One thing I’ve learned from Nat is that the world falls into place. Whether out of sheer familiarity, perhaps, or something more: development and education, or a steady diet of parental patience and love — they/we begin to understand more. With or without language, maybe never saying “I love you, Mommy,” having playdates, or getting a high school diploma. They really really learn how to live their lives.  The world may still be loud and unpredictable, but even that is something they learn to expect. Just like all of us, our autistic guys develop their struggle muscles and grow.

And why not? Don’t we all?

20 comments

You are correct. Even at the age of 9…it is getting better. We’ve worked SO HARD to get to a spot where we can go out to dinner as a family, enjoy family activities, go on outings, take vacations. It still ebbs and flows but we’re getting there. This week my Bugaboo had off for summer break (thank you flying spaghetti monster it is only 10 days) and it was the best one ever and he was super happy. I just feel so blissfully happy. So rested and calm, for a change. I’m finally able to see that we’re going to be ok.

— added by The Domestic Goddess on Friday, July 6, 2012 at 9:38 pm

It does get better but then it also comes to a hault. I’ve slapped up against puberty plus TOM and taking my 12 yr old (the one that “passes for normal”) places has become a huge problem. I had to “air my dirty laundry” at the end of the school year – he’s fine at school since he’s entertained – and they didn’t tell me “all children are like that”. Thankfully, they said “we’ll send for the Counselor” instead. She comes in Sept. It won’t make those Aspies who claim they are empathic happy…. but ToM issues do exist and I’ve got one that needs help learning the basics of socialization since he learnt the more complex stuff without that put in.

My 10yr old severe ASD child… we go everywhere together. He’s emotionally “normal” and lots of fun to do things with.

I’ve been 2yrs without a holiday. I need to find somewhere to go for a few days and get Grandma to come and help again.

— added by farmwifetwo on Saturday, July 7, 2012 at 7:27 am

Thank you for this. As I sit home pondering how to manage getting groceries today, this really hit home… and gives me some hope.

— added by Khrys on Saturday, July 7, 2012 at 9:06 am

Once again you have put into words something I am feeling right now. We just got back from a three night trip in Vail – a place we love to go in the summer. And I’m just spent. It was such a long three days of constantly watching so my guys don’t wander off, of making sure they don’t make other people angry by the contstant movement and verbal stimming, and also trying to make sure they (and their sister) have a good time. Now we’re home and I feel like I’ve finally exhaled. It was a good time and I never regret going up there. But I need the safety of home. Two things I’ve learned from your blog is that it’s still hard sometimes, no matter how old your child is. But also that it does get better. Thanks for the encouragement!

— added by Suzette on Saturday, July 7, 2012 at 10:11 am

This is so very encouraging. My little guys are 5 and 3 (our 5 year old has autism) and even though they are still so young, things have been slowly getting better, easier, we’ve become more capable and the new challenges aren’t as devastating as in the very beginning. But still, we have days when it’s so so rough and reading this makes me encouraged to keep on. Thank you!

— added by jodi on Saturday, July 7, 2012 at 10:17 am

It unfortunately doesn’t get better for all. I look at someone like Kim Oakley who has a severe child with autism and epilepsy who is to be admired for keeping him home and not shipping him off to be neglected at some outplaced institution so mom can have her freedom. Her life has not “gotten better.” She is only one example. Many parents struggle more as the child gets older. I feel this is a bit misleading.

— added by not so for all parents on Saturday, July 7, 2012 at 2:58 pm

Bless you for this post. I so needed it. It’s been a rollercoaster week. My daughter came down with Tonsillitis, last Saturday for the second time in 5 weeks. The first time she had to be hospitalized for 5 days, and recovered for another 10. This time we caught it earlier and she has just been home with me for 7 days. She is well enough to be bored and agitated because she is not doing her “regular” schedule, but sick enough to be home. She is on an Antibiotic and a steroid. Last time the steroid made her agitated and some what agressive. We had the same issue this week. I am walking the fine line of our behvior modification and knowing the steriod is turning a normally sweet young lady into another person. We are in for the afternoon because we earn certain fun outings and today she can not be rewarded for negative behavior. My heart hurts as she has time out in another room. I know I am being the mom she needs by teaching her how to treat people now and in the future, but this is a lonely and sometimes isolated life. Thank you for your post and to all the other mothers who posted also.

— added by Row on Saturday, July 7, 2012 at 3:29 pm

Yes, I can see your point; it doesn’t always get better for some. Luckily I didn’t say that. I feel though that by and large certain things do improve as our children grow and learn. Other things do not. I believe I made that clear. If you feel misled, that was not my intent, of course. I don’t know Kim or how she feels, or her situation. It’s for each person to decide. It would be interesting to me if *she* would write in. As for shipping to institutions, I’ll assume you’re talking about someone whose guardians should look into things.

If you’re looking to pick a fight, you won’t get it here.

— added by Susan Senator on Saturday, July 7, 2012 at 5:22 pm

FW2, I hear you. But I still gotta say, don’t forget they’re still so young! I am sorry about the lack of time off. I’ve been through that, too. I hope you do persevere with Grandma. –Susan

— added by Susan Senator on Saturday, July 7, 2012 at 5:23 pm

Thank you, thank you, thank you for writing this. Today, even though the weather is beautiful, we’ve stayed inside. I turned down a last minute invitation to take my guy to a rodeo…I just couldn’t fathom going out today.

Not much has made me cry lately, but this:

“our guys, especially our guys, seem to blossom as they get older.”

made me cry. I needed that. It seems you have blossomed, or re-blossomed as you have gotten older as well. I can only hope for that growth for myself as I walk this path with my son.

— added by Kim on Saturday, July 7, 2012 at 9:21 pm

I am trepidaciously planning to cyber school this year. At first, I has planned to cyber school my ninth grader, plus Charlie, who at 12, has autism, plus my daughter who is going into 3rd grade. I’ve been having nightmares about schooling all three at once. So my husband suggested just doing Charlie at home and sending the others to school. (note: the high school is horrendous and we can’t afford private school.)

My two huge problems are that Charlie is capable of learning, but the school is not teaching him, only letting him do what he wants so that he’s quiet. And the teachers scare him, he mimicks autistic behaviors from his special Ed classmates. This year was his first in a totally autistic special Ed class. I thought when we moved to Pittsburgh, there would be this autism Mecca to help Charlie learn, but it has been awful. They plunked him in spec. Ed and that was that. Seclusion. Six screaming kids, plus scared Charlie, who watches as other kids are threatened with being sent to the principals office.

In 2010, I cyber schooled all three for 11 months, with much success, but we moved to the big city and Rachel wanted friends and soon all wanted to go back to school.

So I put them back in school. Charlie is a quiet child who is not being taught what words mean at school. Char is an instinctive speller (never less than a 100% on a test) and has a super memory and can read anything, but has the comprehension of a second grader. At home I was able to get about 85% of his vocab words to become meaningful for him, plus he was learning and using prefixes and suffixes.

I think that home schooling him with a cyber school’s help and a third grade curriculum would help him progress, but I am afraid of going insane from no me time. I am 47 with six kids, three grown, three little.

If I opt to keep him in school, he will never have the CHANCE to learn to comprehend meanings of words. I know this because we put it in his IEP, they ignored it. We put that he would get a second grade science book and curriculum, they didn’t do it. We wasted a year, a year where he is so teachable. If he doesn’t learn the words meanings, Science ( which he loves) and history will be incomprehensible to him, because the language used in the books will be beyond him.

Do I commit to home schooling again? Is it ok to say,”I am going to home school Charlie, but you two other children have to tough it out in school, because mom can’t hack it with three kids.”

Or do I send them all to school just so that I have some kid free hours in the day?

Help me here guys, I’m suffering with this dilemma. Sorry to hijack your post, Susan.

— added by Janet bowser on Sunday, July 8, 2012 at 5:48 pm

Thank you for posting this, Susan. I have two little boys with autism and this makes me feel much less insane! I’ve had people wonder why we don’t “get out more” and it’s because it’s extremely difficult. I don’t know if things will get better for my family in the future, or much worse as the other posters have discussed, but this made me feel less alone in the present. Here’s hoping for the best.

— added by Carolyn on Monday, July 9, 2012 at 8:56 am

Thanks so much! We’re looking forward to the days that it gets better. :) The young days were rough when he was “ADHD crazy” and when puberty set it we might as well have just put a lock on the door cause we weren’t going anywhere. It’s messed his anxiety up so badly that he cut a hole in the back of my couch so he could hide inside of it.
He got into a special school for kids with Asperger’s and I’m throwing all my hope into that basket for now. The other parents say that it’s been the best thing in the world for their kids because they finally don’t have to worry about socializing and can just sit down and learn. Nobody in the class is weird cause half of them are sitting on theraballs and half have earphone noise dampeners, they all have their fidgets at their desk and most have awkward smiles. They have OT and social skills every day. Hoping and hoping and hoping that it gets better.

— added by Danika on Tuesday, July 10, 2012 at 9:42 am

This is the exact thing I needed to hear today. My 5 yo is having a tough year. So much aggression, so little visible progress, and it seems only to be getting harder. It is hard for all of us and hard to imagine how things get better. Many days, Hope alone propels us forward.

— added by Jennie B on Tuesday, July 10, 2012 at 9:32 pm

[...] Read Susan Senators moving account of how “It gets better” autism parent style. [...]

— added by Autism: It gets better, but cherish each stage | Autism PDA on Wednesday, July 11, 2012 at 2:36 am

@Janet

I feel like I know exactly what you’re going through. I have two boys and the older one, age 8, has ASD. After multiple problems (what good is an IEP/BIP if the teachers and aides ignore it?) and a nightmare experience in public school (a very harsh seclusion and restraint for no good reason) for my ASD son, we pulled both kids out. But then what? We seriously considered moving to another state in search of better schools and services (very little available where we live), which may be how you ended up in Pittsburgh. In the end, we couldn’t afford to relocate and we are stuck where we are. And who knows if a move would have made any difference. We can’t afford private school and the schools where we live won’t admit my ASD son anyway, even though he is brilliant and amazing and works so hard. So I am still in the fearful-and-alone stage, trying to do what’s right for my children, but finding very few options. Although I see my ASD son “getting better” as he grows and matures, the world around us is not getting better. It is still a place full of teachers, coaches, and camp counsellors who have no desire to learn how to work with my son. Any class, camp, sport, or school you can think of, my son has been turned down for it, usually sight unseen. So we retreat again, breaking off from the world more and more each year.

We too are going to have to start some kind of homeschooling, and this is not by choice. The last thing I want is for my family to be more isolated, but what choice do we have? My problem is not autism, it is the discrimination against autistic people that we come up against again and again. It’s absolutely demoralizing. I do have hope for the future, and I’m trying to let Susan’s account here make me feel better.

— added by RightThereWithYou on Wednesday, July 11, 2012 at 8:56 am

We ended up in Pittsburgh because my mother in law died suddenly, leaving her house to my husband. She was a hoarder and we had to clean it out, get rid of the rats and fix it. We just sort of got stuck here between jobs. And if you’re between jobs for a year, a paid off house is a good place to be.

Pa is hard on home schoolers. But school was hard on char. His “aide” was doing his work for him. They would tell me he had made up these wonderful sentences, but they were lying. They would take him out of core classes like science to have him scred paper. Daily.

I can’t imagine a district turning away any child, but I can see parents walking away.

Autism and ADHD discrimination is huge. And I feel I put my child in danger every time he goes out the door, because schools can “restrain” them, and other ways of legally hurting our kids. And our kids are incapable of telling us what happened. Even though Charlie is verbal, he gets so scared that he won’t tell us.

Once there was a bus bully. Charlie didn’t tell us about him, but became very fearful of the bus and we isn’t know why. Charlie told me about the bully the day we pulled them out of school. I told the school, but it turned out that kid had moved the second week of school, and Charlie didn’t know. Which meant he was scared, throwing up daily and having stress headaches for nothing.

Am I just a control freak? That’s what the school calls parents like us.

— added by Janet bowser on Wednesday, July 11, 2012 at 9:49 am

If you’re a control freak, that’s exactly what you should be.

— added by Susan Senator on Wednesday, July 11, 2012 at 9:55 am

I have finally decided to enroll all three kids in pa cyber school. The deed is done.

— added by Janet bowser on Wednesday, July 11, 2012 at 11:25 am

You are so right. I have 5 year old twins.. one with autism and one neuro typical. Only 1 short year ago there were so many very difficult things such as a haircut, a trip to the department store, a vacation. We did all of these things even though most of the pleasure was overshadowed by the struggles. Each one of those things.. esp. a haircut has been much easier this year! Our entire family has really seen the benefits of all the hard work that everyone has put forth.. esp our little one with autism (all the therapy)! Thanks for your blog which reminds me that things are already getting better!

— added by Cathy on Saturday, July 14, 2012 at 10:57 am