The Ten Commandments for Parents of Kids with Special Needs

I love when I get a new follower (yes, I notice these things...)!  I was checking out her blog about her special needs son, who about knocked me out of my computer chair with how gorgeous he is.  Go see for yourself! 

She posted this list, that I can't believe I've never seen in all my special needs-internet-surfing.  Nothing on this list is earth-shattering.  Many of us do a pretty good job with many of these, 9 days out of 10.  But on that one day we don't, it's good to have this reminder.

The Ten Commandments for Parents of Kids with Special Needs

1. Take one day at a time, and take that day positively. You don’t have control over the future, but you do have control over today.

2. Never underestimate your child’s potential. Allow him, encourage him, expect him to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

6. Answer only to your conscience: then you’ll be able to answer to your child. You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can’t be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

8. Be kind to yourself. Don’t focus continually on what needs to be done. Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

When I Googled this, I found numerous examples of this list on the internet.  Having no way to tell which was the original author, I'll cite the first example that showed up on the results list here.

Hoop Dreams

Maybe I'm still watching Little Einsteins butr as long as I hold this basketball, I give my daddy hope that one day I'll have a shot at the NBA.

For the Love of Coffee

You don't know how much is enough until you know how much is too much.

I'm pretty sure we're on the placebo.

We had our third clinic visit this past Monday and four weeks into the trial, we still don't see many changes.  They are both talking a little bit more, but there are still huge anxiety issues with both boys.  And when we told the doctor that, she said well, maybe they are on the placebo, or a very low dose.

Which made me think that SHE expected to see some changes by now, too.

We have the last two appointments all scheduled, the last of which is in mid-December, and she said that then we can get them into the extention and then we'll KNOW they are on the drug and we can see what dosage will work for them.

Which makes me think she wants us to definitely do the extension.

This is Dr. Elizabeth Berry-Kravis, by the way, a world-renowned Fragile X pediatric neurologist, and a superstar in the Fragile X community.  If she wants us to try the extension, we are going to try the extension.

If she told me it might help for me to jump through a hoop of fire, I'd probably try it.

We have a nice long break now before our next clinic visit.  We don't have to go back to Chicago for a month.  So we'll spend this month trying to stay in a comfortable, predictable, routine of school, therapy, Little Einsteins, and occasional trips to the mall and Target.  We'll try to keep the anxiety level as low as possible.

We'll keep taking our trial meds, and we'll keep hoping for great things.

This past weekend in Chicago we tried to make it into a family mini-vacation.

We decided a couple of weeks ago that we wanted to take the kids to the Shedd Aquarium.  I emailed them and explained why we were going to be in town, told them about Fragile X and autism and how it affects the boys, and asked if they had any ideas or suggestions of ways we could make this a successful, fun outing for the kids.  Their reply was basically a form email they send to anyone who asks about how to make a trip to the Shedd successful and fun.  I was kind of disappointed in that.

But we got there around 20 minutes before it opened, and were the third family in line.  By the time it opened, there were probably 10 families in line behind us.

Well, I waited in line, while Mark and the kids bounced, skipped, jumped, and ran around in circles.

"We know it cost $147 for all of us to come in here, but we're tired of the aquarium, can we go back to the hotel and watch videos now?

And the Shedd Aquarium was a very positive experience for all of us.  For the first hour or so it wasn't crowded at all, so we could kind of let the boys run around and play on benches and even lay on the floor a little, if they wanted to.  They even showed some interest in some of the exhibits.  AJ and Aliza watched the Alligator snapping turtle with awe.  Heck, so did I.

I didn't take this one - it's from here.

Being regulars at the Minnesota Zoo, we are well acquainted with dolphins but we aren't used to seeing Belugas, and thought they were fascinating.

We stopped for lunch and played with the iPad, and then we took a big leap out of our comfort zone, and took the kids to see "Dora and Diego's 4D Adventure Catch that Robot Butterfly!"

You know what 4D is, right?  It means you will feel and smell the movie as well as having it appear to jump off the screen and into your lap.

We could smell the rainforest.  The chairs rumbled and we got wet and windblown.  It was all a bit much for AJ and he started to cry just a few minutes into the show, so he and I left and waited outside for the others.

It was one too many "D"s for him, I guess.

After we left the aquarium it occurred to me that the biggest and greatest American Girl store in the whole world is in downtown Chicago, just a couple of miles from where we were at that very moment.  I couldn't resist it.  I talked Mark into letting Aliza and I spend a little time there.

She floated through that store on a cloud.  Number nine, I think.

Then later in the afternoon we took the kids back to the hotel pool, where they just so happen to have a couple of flatscreen TVs mounted on the wall, that just so happened to have the Vikings/Packers football game on them.  There was no one else at the pool.  So for a little while, I got to kick back in the jacuzzi and watch football.  Mark said "don't get used to this."

I said, "Too late.  I'm used to it."

I'm pricing jacuzzis on the internet right now.

Our Ongoing Travels

We're baaaaaaaaaaaack ...........

in Chicago.  For another check up for the drug trial.

This time Aliza came along.







Racing







A Hilton miracle has occurred.  Both boys were asleep, in a hotel room bed, before 8 PM.  They are becoming seasoned little travelers!

I spent some of the drive thinking about what I'd tell them, when they ask whether we are seeing changes in the boys' behavior or anything yet.  I will have to say no, not really.  A few little things, but nothing really amazing.

If anything they are still showing more signs of stress and anxiety than they were 6 months or a year ago.  AJ bit me a few times on the arm this week.  I haven't had bruises from bites from these boys since they were around 4 years old.  I dressed them alike today, and by noon AJ had to change shirts because he'd chewed and sucked on the sleeve, soaking it right up to his shoulder.

They know, by now, what happens on these trips.  Lots of fun will be had, but at some point we're going to have to visit the doctor and have their arms poked, and be otherwise prodded and manhandled by scary grown ups in white coats.  They know.

Still hoping and praying and crossing my fingers and toes that something really good comes of this.  That all the stress and anxiety of these trips is totally worth it in the end.  I know that whether or not it helps Zack and AJ, our participation helps get this drug approved and out on the market, where everyone can try it, and people with Fragile X everywhere can live much more fulfilling, social lives because of it.

But I'd sure love for us to be one of the ones who benefits from it.

A Side Effect of STX209?

Could a penchant for women's clothing be a side effect to the trial medication?  Zack has developed quite an attachment to his sister's pink butterfly shirt.

(I'm kidding of course.  Zack has always had a weird attachment to this shirt.  Remember this day at the park, when he was loving all over Aliza because she was wearing it?)

You know what?  I'm perfectly fine with him wearing it.  Because with the pink butterfly shirt, he's calming sitting under the table.  Not screaming.  Not biting his brother.

Yesterday the pink butterfly shirt was in the wash, and the two of them were like squirrels on crack.  I have no idea what the deal was.  I swear they were running up the walls and across the ceiling.  So today, if one of them requires a girly shirt to sit down and stay calm, I'm going to be a-okay with that.

Otherwise, the three of them are spending quite a bit of their time off this week (parent-teacher conferences and MEA) doing this.

I don't think we are noticing any positive changes from the trial drug yet.  Maybe AJ talks a little bit more.  Maybe Zack has been a little bit better in public.  If I were looking hard, that's what I'd see so far.  But I'd also see that both of them, in particular AJ, have been chewing more.  AJ goes through two or three shirts a day because he chews on the sleeves until they are soaked up to the elbows.  Chewing is a manifestation of anxiety.

We leave for our third trip to Chicago this weekend.

I don't care what any of you say.  I think I look GOOD.

What if? Disabilities thru History and the Lucky Breaks We've Had

The Partners in Policymaking class this past weekend got me thinking about chances.  We have been learning about how people with disabilities have been treated and viewed throughout the history of humans.  Disabled people were shut away, if not just killed outright, up until fairly recently.

Up until the 1970s parents of special needs children were routinely told that things were hopeless.  They were encouraged and in many cases, instructed to put their children in an asylum.

Where they weren't given any treatment or therapy.  They were barely treated as human.

You couldn't really blame them.  It was a matter of lack of knowledge.  People didn't understand that with the right types of assistance, people with disabilities could be productive members of society.  In some cases, they didn't even recognize disabled people as human.

It made me start thinking about how easily it could have been different for us....

Our pediatrician was the first to notice something wasn't quite right with the twins. 

She sent us to the Early Childhood area of our school district, and to a neurologist.

Early Childhood began occupational therapy with the boys while they were still babies.  They also showed us how to get in touch with a county worker.

The neurologist ran tests that diagnosed the boys with Fragile X Syndrome.  He sent us to a genetist and behavior specialist.

The behavior specialist got us started on some medications and sent us to Courage Center for speech and occupational therapy evaluations.

Courage Center evaluated the boys' delays and reported back to us - your boys can learn, they said.  We can teach them.

Almost everywhere we went, we did what we were told (the one exception I can think of is the sleep clinic, which is a story I'll tell another time.).  We did what we were told, just like parents 40 years ago were tempted to do and often did.

Nobody said, there's nothing we can do-- put them in an asylum.

Not sure what I'd have done if they had.

Temple Grandin's mom didn't do what they told her to.  And look at what an amazing, productive person Temple has become.  But her mom was a renegade.  People thought she was batty.

I'm not so sure I wouldn't have decided that institutionalization was the best thing for my boys, had these trusted professionals told me it was.  I like to think I would never have done that.  But had I lived and had my family during the time when that was the norm..... I don't know.

I wonder if parents of adults with autism everywhere look at Temple and wonder, what if I'd bucked the system too, and worked with my kid?

We will have fun if it kills us.

This morning, I forced the boys to come have fun outside in the backyard with me.  I raked and they stood by the back door, trying to get back in.

"TV, computer, we miss you...."

"Come on, stop torturing us with all this fresh air and sunshine."

But guys, look at this awesome leaf pile I'm making for you!

Fine.  We'll come down, but this better be good.

Okay, you're throwing the leaves up in the air, that's kind of fun....

Come on mom, faster, higher, we're getting bored here!

I'm not sure I'm loving this.

I'd just as soon stomp through it.

Well, that's about all the fun we can handle for today.  Can we go back in now and watch Little Einsteins?

Even the cat just wants back in the house.

Not Loving Chicago

I love how everyone says "oh, I just LOVE Chicago" when I tell them we've been spending a lot of time there.

I guess to LOVE it, you have to see more than the traffic on the expressway, parking lots, hotel rooms, and the medical center.

You also probably have to not travel with two small children with autism.  It's hard to enjoy your trip when you are constantly hyper-aware of your two little ones and the dangers all around, that they are completely oblivious to.

The level of hyper-vigilance we have to have with the boys is stressful and exhausting in a way I don't think many people get.  I keep thinking about that family in California that was in the news a few weeks ago, whose 8-year-old autistic son was lost in the woods.  (I wrote about it here.)  He'd been in the care of a foster parent or something (who obviously didn't watch him closely enough and lost him), having been taken away from his parents because they'd tied him to a post in their front yard.  They did that because they found themselves facing foreclosure and having to move out of their house quickly, and they had no one to watch their son.

I think I know exactly what they were thinking.  That child required the contant, focused attention of one person, 24/7.  The person watching him could not also pack and move things out of the house.  One entire person had to be 100% watching him and doing nothing else.

They wanted to keep him in the yard, where he could watch them coming and going from the car, and where they could see him.  Where he wasn't secluded or isolated, but was safe. 

Would it have been okay with Child Protective Services if they'd barricaded him in his bedroom, instead?

My boys require that same level of supervision.  I completely understand what would drive you to tie the child to something, just so you could have both hands free to do something else.  Let me tell you about the last time I thought about tying up one of the boys.

At the hotel we took the boys down to the lobby for the continental breakfast.  It wasn't that busy, but neither of them would sit.  My dad held onto AJ while I struggled to get Zack to stay at least next to our table.  He laid on the floor.  The breakfast was great - bagels, muffins, donuts, scrambled eggs, sausage, coffee, juice, and milk.  Some cereal.  The only thing there either boy might have eaten is the Fruit Loops, but under these stressful circumstances, in a strange place full of strangers, there was little hope of either of them eating anything.

Incidentally, we don't bring them there to eat.  We bring them there to try to get them used to being in a situation of eating in public.  We bring them, because they won't learn how to sit down in a restaurant and behave properly, if we keep isolating them.

But it's hard to eat when you never have more than one hand free.  AJ's decided he can sit, sort of, if he sits on my lap and I hold him there.  I can't butter my bagel.  Eggs keep falling off my fork because of AJ's struggling to get loose.  I have to time sips of coffee carefully to avoid sloshing it all over myself.

So maybe you can see why, in that hotel lobby, I briefly thought about how nice it would be if I could tie AJ to the chair next to me just for a few seconds, so I could let go of him and butter my bagel.

When we walk out to the car, I have to step up the supervision level because if I'm carrying things and maybe not holding both boys hands, they are just as likely to skip off in a different direction as they are to run toward the car.  Imagine walking out to your car in a crowded, busy parking lot with two 2-year-olds.  It would be nerve wracking, trying to keep them safe.  My two still have the unpredictability and impulsivity of 2-year-olds, only they are faster.

So maybe you can see why I breathe a little sigh of relief, when I can strap them both down in the carseats.  They can't get up and run off and I can look the other way without worrying about what they are doing.

During the course of this last trip, AJ mouthed and chewed on things (his shirt, his blanket, a pillow) so much he'd developed sores on both sides of his mouth.  One side looks infected.  I put Carmex on his lips all weekend, but he's kind of a mess.  Zack has been rubbing the collar of his shirt across his bottom lip so much that it bled.

At a rest area/oasis along the highway.  Chewing, chewing, always chewing....

Fighting over the computer in the hotel room.

No, we are not seeing a reduction of the anxiety behaviors yet.

Driving is nice because I know the boys are safely belted in and can't get into too much trouble, but driving 8 hours is also quite a drain, so by the time we get back home, it takes a couple of days before I can even begin to think about planning the next trip to Chicago.  Maybe after this weekend, I can begin to think about it.

And maybe on the next trip. we'll try to see something besides the hotel and the medical center, and we might develop an appreciation of the sites in Chicago.  As of right now, though, I don't LOVE Chicago.  I don't even really like it.

Live from Chicago, starring the iPad!

I was going to be that super cool blogger who blogs from anywhere because I'm so totally mobile now, with my new iPad, but I couldn't figure out how to do it, so my techy-self-esteem imploded and I'm on my parents' computer instead.  I could get to Blogger and type up a post but nothing happened when I clicked "Publish", or "Save."  It didn't publish or save.  I don't know, maybe iPad isn't compatible with Blogger?

Anywho...

We did finally get the iPad, and the kids all love it.  And by kids I mean the three of them and me.  Mark hasn't had gotten too close to it yet, he hasn't been aggressive enough.  At the rate the other four of us are fighting over it, he's going to have to get tough or get used to waiting.  Aliza loves Angry Birds, Drawing Book, and the Real Piano HD; the boys love Super Why and PBS Kids;  I also love Angry Birds, but along with that, the Twitter and Facebook apps.  Yeah, my social networking apps get me through the day.

I downloaded a bunch of free apps for the boys, including ABA Flashcards Emotions, Animals, ABCs, and Actions.  They are only slightly interested in that.  I also got SeeTouchLearn, but I'm trying to figure out how to set it up with the cards it came with for free, before I buy any.

It is so wonderful to watch them play with it and love it, though.  AJ was putting puzzles together on it this afternoon.  Not baby puzzles with like 5 huge wooden pieces that fit in so obvious empty spots on a wooden board.  Big kid puzzles, with like 6 pieces.  Now I had to do the first couple of pieces, but he did most of it himself!

I have been told that iCommunicate is a good app, but I see it's $49.99, so I'm might get that for them and call it a Christmas present.  After someone can show it to me and convince me it'll be good.

We are in the midst of our second trip to Chicago for the STX209 trial.  We are going to be seasoned, experienced travellers before too much longer.  We have been swimming a lot and watching a ton of Little Einsteins.  I wish they'd make more of them, there are only like 45 different episodes and I've got them all memorized.

So what apps do your kids with autism love the best?  I need suggestions....

I'm the Ref

The Minnesota River behind my parent's house.

It's been so unseasonably warm and no one dares to complain, because it's a week into October and it's unheard of to be able to wear shorts and flipflops this time of year in Minnesota.

But I have long held the belief that warm, humid weather brings out the worst in my boys' behavior.  Every summer they are like little wrestling bear cubs, not aware at all that they are hurting each other until someone is crying.  Then the violent lashing out begins, and each of them are angry, and neither seems to realize what brought this on. 

I guess in some ways, they fight just like two ordinary 6 year olds would.

When fall starts and it's cooler and leaves fall off the trees, they calm down.  Some.

So I'm ready for the days of sun and warmth to taper off, because they have been full of pinching, biting, pushing, and head butting.

And I'm tired of playing referee.

"Dolphin Tale," and why you should go see it.

Last week, a few days before we were due to leave for our first trip to Chicago to get the boys started on the clinical drug trial, I started having doubts.  I was concerned about this long car trip and how the boys would handle it.  I was worried about the evaluation and examination before we started the trial - the blood draw, the EKG.  This was all going to be so tough on them.  What if it wasn't worth it?  What if this drug just doesn't seem to do anything for them?

I really wasn't concerned that it would be harmful.  I trust the trial doctor implicitly.  She's one of the greatest Fragile X Syndrome doctors in the world.

I wasn't worried about side effects  - I was nervous that we were going to spend a fortune making multiple roadtrips to Chicago and wouldn't see any results at all.  I was nervous that we'd taken the boys off their anxiety medication for this, put them through the withdrawal and a very tough autumn and start of school, all for nothing - if it didn't work.

Maybe I overthought it a bit.

The afternoon before we were to leave, Aliza and I had some mother-daughter time together, and we went to see the movie"Dolphin Tale."  It's about a kid who finds a beached and injured dolphin and ends up helping the marine hospital to care for it.  The dolphin loses its tail and a rebel scientist played by Morgan Freeman takes on the challenge of making a prosthetic tail so the dolphin can swim normally again.

It's a true story.

At the end, there are scenes from the real dophin (named "Winter") that inspired the movie, and the many people with disabilities who came from far and wide to see her.  This animal, swimming around with its artificial tail, has such spunk and energy and heart.  Many, many people with a variety of disabilities found a kindred spirit and inspiration in Winter.

It reminded me that we might have to venture out of our own backyard to find inspiration.  We might have to travel.

Winter rejected the first couple of tails Morgan Freeman's character made for her.  They just weren't quite right.  But he kept going back to the drawing board and trying again.

It reminded me that it's important to keep trying, even if we are faced with roadblocks and rejection.

The look on the faces of these children and adults, some in wheelchairs and some missing limbs, when they got into the water with Winter was absolutely overwhelming for me.  They were so awed.  They live in worlds where they are different, and not often in a positive way.  Winter was so beautiful and graceful and special, and maybe it reminded them that they are beautiful and graceful and special, too.

It reminded me that it's important to reach for the stars.

It was a great movie and you should go see it.  Bring some tissues.

It's Not A Competition

Jocelyn learned to pedal the tricycle this weekend.  I pondered for a bit the fact that Zack and AJ haven't mastered that skill yet, and then decided it would be enough if they would just come outside to play without us having to drag them kicking and screaming.  On AJ's part I mean that figuratively, but Zack literally screamed the entire time he went walking with Grandpa and daddy.  At least we knew exactly where they were.  Suffice it to say, the boys did not appreciate the beautiful weather.  Who cares about the weather, when all you want to do is watch the Wiggles on You Tube.

(No noticeable changes from the trial meds.  Yet.)