Be A Good Mom

I am concerned that Geetle is stressing herself out. She worries so much about Pookie. She tugs at his arm, telling him to come along, walk faster, watch out, etc. She gasps when he wanders 3 feet away at the grocery store and touches the canned goods. If he carries a toy or book into a store, she takes it from him, so he won’t lose it. She has always answered questions for him, but the rest of this is new.

Generally, Pookie is a good kid. He does not wander far, he does not get into trouble. He is a lolly-gagger, but what 5 year old boy doesn’t drag his feet at Wal-Mart? BAGD and I are trying to teach him independence and how to manage himself. Therefore, we keep the leash pretty slack. We make sure he stays with the group, but if he wants to look at the “Coke vs Diet Coke” SuperBowl display at the grocery store, we let him. He comes back. He behaves himself.

But, Geetle worries. She thinks he will get lost, or hurt, or in trouble. Her heart is in the right place, but I don’t want her to get too stressed out. We have never said anything about Pookie being “different” in front of Geetle. We never even say “Autism” here. We say “the big A”. But somehow she seems to have figured out that Pookie needs some support, although she is not sure how much. We see that she does it with Giggles too, so we know that it is just her altruistic tendencies coming through. She is our Little Mother.

Pookie, for his part, lets her do it. He listens to her when she tells him to put his shoes on. He will hand her his Capri Sun if he can’t get the straw to poke thru. But he also will tackle her when he wants to play. So, while he accepts that she is sometimes right, he knows she is a kid and technically not the boss of him.

When Pookie wandered over to the OREO display at Wal-Mart today, I told Geetle to take the day off, that I would worry about him for her. She giggled and grinned at me, so I think she knows that she should lighten up. I don’t mind her helping me watch him, because she is polite and tender when she does it. She never yells at him, she just grabs his hand or tells him to hurry up. And Pookie does not mind it. But I do not want her to get too stressed out. I know how stressful it is to be the parent of a boy with autism, and I do not want my 5 year old daughter to go through that.

So, this guy won Big Brother 9.  He pledged to give $100,000 of his prize to an Autism organization, to apologize for his stupid remark during the show.  Apparently, not only is he bad at telling jokes, he is also unaware of the US tax code. Now that he has figured out that he is getting closer to $250,000 after taxes, he has declined to follow through with his donation. 

Whatever.  You can’t buy comaedic timing or a sense of humor.  I still stand behind my original comments, which were that this guy is horrible at telling a joke.  Regardless of the content, right or wrong, it was a bad presentation, a poorly constructed joke.  The content also angers me, but mostly I feel sorry for the goofy-looking guy.  

I did not want to jinx it, so I waited to write about the final chapter in Pookie’s bus drama.  But here is what has happened lately.

About 10 days ago- he was reading his “No Standing on the Bus” sign every day and seeming to get it.  But then one day took off his seatbelt, stood on the bus seat and jumped up and down.  BAD.

About 9 days ago- School district says he has to wear some device to keep him in the seat.  We agreed.  We were not against using the integrated carseat or harness, only against having it be the first thing and not giving him the chance to learn how to behave and see the consequences of his behavior.  We agreed to the integrated carseat, which has a chest and crotch buckle. 

About 8 days ago- off to school in the integrated carseat.  5 minutes into the trip, he lets himself out of the carseat by undoing the chest and crotch buckles.  If you have kids in carseats, you know that this was quite a feat, but he did it.  By the time the bus driver stops the bus, he is back in his seat FULLY BUCKLED.  This clearly shows that he knows the difference between right and wrong in this scenario.  BAGD and I are now fully ready to harness him.  He is just being naughty.  Autism is not a free ride, you still have to follow the rules….especially those that you understand!

About 7 days ago- The Bus Driver says, ” I think he is bored.  Can he read a book on the bus?”  I thought they had rules against that.  She says they do, but they will make an exception for him.

About 6 days ago- Pookie is off to school with an extra large copy of “The Adventures of Curious George.”  He behaves on the bus.

About 5 days ago- his book is “Tibor Gergely’s Big Red Story Book.”  No problems on the bus.

About 4 days ago- Usborne’s Book of First Experiences.  The Executive Director of the district preschool program calls me to discuss our situation.  Oh boy.  Our district is the second largest in the state.  That is like you getting a speeding ticket and the governor calling to see what happened.    I told her where we were and that it had worked for a few days.  She is a very nice woman and said she hoped things continued, but if not…….

About 3 days ago- The Complete Adventures of Winnie the Pooh. 

About 2 Days ago- The Complete Adventures of Winnie the Pooh.

Yesterday- Big Bird the Babysitter.

Today- ?

I hope we have reached a milestone here.  He has not misbehaved since he started taking a book on the bus.  Coincidence?  Temporary Solution?  Really, there is no way to know for sure, but I *feel* this is it.  Yesterday, he and I went out on the porch to wait for the bus.  he had Big Bird the Babysitter under his arm.  I offered to read it.  He said “No, read book on the bus.”  I said, come on, I will read it while we wait.  I grabbed the book and opened it.  He snatched it back, closed the cover and said “NO.  Read book on the bus.”

So, there you go.  Read book on the bus.

We are trying to make Pookie more aware of his echolalia.  From what we have read, many people just learn when to control it and when to let it fly.  It never really goes away, for some people.  Plus, if he is going to survive in regular kindergarten next year (meaning, not get kicked out by the teacher) he needs to sit quietly at times.

But sometimes he is in full blown echo mode and nothing will stop him.  He has a script he needs to get through before he can stop.  Or get through a dozen times, or a hundred times.  Other times we can convince him that it is time for quiet.  At those times, its usually because he understands the consequences.  For example, we will not read stories while he echoes another story, hums or sings.  We will not watch TV while he does it, if he needs to hum/sing/echo he has to leave the room.  TV or echo.  That’s the choice.

Tonite at bedtime, he sat quietly through “Welcome to Blues Clues- a lift the flap book” and “Guess How Much I Love You.”  When they were done, I if he wanted to show Daddy how much he loves him (from the book).  He said “No, I need some humming.”

We could not argue with that.  Sometimes he does need humming.  Its part of who he is.  He is learning to handle it, to manage it.  But that means finding time to do it too, not just time not to do it.  Everyday he teaches us a little bit more about how his mind works.

Interesting article on the affects of Autism on family finances.   Scary.  Especially considering that having children in the first place affects your finances so drastically.  Then to have a special needs child adds more on top. 

Pookie had trouble on the bus again last week.  On Day 2 of using his homemade seat belt cover, he thwarted it.  He stood up, moved around the bus and eventually made his way to the emergency door where he tried to do the bus driver a favor and “lock” what appeared to be an “unlocked” slidebolt.  Problem is, that slidebolt lock is something they do at night for lockdown of the bus.  If you “lock” it while the bus is “on” the alarms go off.  So…that is what happened.

This was Friday onthe way to school.  They let him come home on the bus and he behaved himself perfectly.  But they said the harness was coming out on Monday.  I called and pled our case again.  He needs to be taught how to behave on the bus.  Let me teach him.  They said they would work with us. 

I asked to ride on the bus for a week.  They said no.

I asked for a bus aide.  They said no.

I asked for him to be switched to another bus where some other kid already has a bus aide.  They said no.

They did agree to give him a bus aide for 2 days, let me tape signs to his seat reminding him to sit, and tape a “STOP” sign on the emergency door to remind him not to touch it.

BAGD and I also did more research on a seat belt cover.  The technology exists.  You can easily buy one for your car at Amazon.  The problem is that the bus seat belts are the old fashioned kind, with the button in the center of the buckle, not on the side.  Think 1980’s Chevy Truck. 

We finally found one at Perfectly Safe.com  that will fit the old fashioned seat belts, namely bus seats.  It was cheap, $5.95, but to overnight two of them here put the bill at $57.  If Pookie ever wins a coloring contest at the mall and the prize is $10…its mine.  I also intend to make him share the Culver’s Gift Cards that Great Grandpa gives him every year with me until his debt is paid. 

He rode the bus Monday and Tuesday this week so far, and it has been fine.  I think that the reminder signs taped to the seat will be the best solution.  He knows how to behave, he does.  He just needs reminders and an understanding of why and what the consequences are. 

Now, everyday we talk about the bus rules before he gets on the bus.  I tape the sign to the seat and we ask him about it every day when he gets home.  We hope it continues to work.  We are not sure if the Transportation department will let us use the new $56 seat belt buckle covers.  Even if they do, he can loosen the slack on the belt and still wiggle out.  We are putting more faith in the reminder signs, but the bus people want some sort of restraint, so we are working with them on that, to make sure its a restraint (buckel cover) that we can agree to.  If not…I will be driving him to school every day.  We do not want him in that harness. 

***********************

because it took me and BAGD soooooooo long to find a seat belt buckle cover for Pookie’s bus seat, and others parents might have the same problem, pardon me while I try to save their sanity and time by directing a little bit of search traffic here.  Trust me, there is very little chance they will find the product any other way.  Perfectly Safe is a good website, but they did not come up on the first gazillion searches I did.

seatbelt buckle cover bus seat belt lap belt autism safety on the bus stay in your seatbelt seat belt safety cover buckle lock keep child in seat on the bus

I asked Grandma, a former first grade teacher, if she thought Pookie could read, or if he was just fooling us with memorized things.  Grandma gave me a textbook called “Teaching Language Arts” by Carole Cox.  Alot of it was over my head, but I did get a few things.  One thing that I liked was called the “Camel Test” which measures how well a child uses invented spelling and understands phonics.  The test :

1.  Ask the child to spell CAMEL- a word he or she has heard but probably not seen in print.  If the child writes C-A-M-L it demonstrates awareness of the four phonemes and the ability to match the letters to phonemes in the word.

2.  If the child spells CAMEL correctly, substitute another word such as EAGLE (EGL), BACON (BAKN) or MAGIC (MAJEK)

I do not understand the full significance of this test, because I am not an educator.  But as a parent, I can tell you that I liked what I saw out of Pookie.  He listened to the words and then spelled them, the best he could.  His answers made sense and I KNOW they were not just memorized.  One way I know is that when he memorizes things…he memorizes them CORRECTLY.  He spelled every one of the words wrong, but close enough to prove that he was sounding them out in his head and he understands what sounds each letter makes.  Very impressive for a boy that has NEVER been taught phonics in school; there is just no time for it at his preschool.  Geetle, on the other hand, does study phonics at her preschool.  She also took the test.  Their answers are below.

Word                      Pookie’s Answer               Geetle’s Answer

Bacon                        Baekn                                    Biy

Magic                        Migek                                    Miagh

Eagle                        Eggol                                       Eihl

Swing                       Swaewng                               Sopoa

Ladder                    Leadd**                                 Lriner

King                         Kin                                        Cqrs

*I did not do “camel” because that is a word I know he has seen in print repeatedly.  He has a book with a story about a camel.

**I was surprised that he put 2 “d”s in Ladder.   He spelled the word “lead”, paused for a few seconds and then added another “d”.  I think he remembered seeing that word in print and was trying to spell it correctly by considering how it sounded and what he remembered from seeing it in print.

I was pleased with how they both did.  I think Geetle could have done better if she had not thought it was a competition.  She gets a bit overzealous with competitions.  She was trying to spell them fast, in case speed counted.   I plan on showing this to Pookie’s teacher at our meeting next week.  We are constantly reminding everyone (the school, society, ourselves and even Pookie himself) that he is capable than more than you might think.  He is barely 5 years old.  He has autism.  He has taught himself how to read.

Pookie has been a ball of energy lately…well, more like for the past 5 years. But he has definitely turned it up a notch recently, especially at the table. He pops out of his dinner chair, darts to the kitchen, twirls twice and then begins a script from Dragon Tales. He “falls” out of his chair, in response to the silent Jack and Jill episode running thru his head. He slowly creeps to the edge of his dinner chair, until we finally notice he is not sitting at all.

Our response was to make and use what we call “The Boy Sitter.”

The Boy Sitter makes boys sit. It is a panel of cloth, sewn at each end, with dried bean-filled channels. Pookie wears it over his lap at the table and the weight/pressure reminds him to sit. Its that simple. He does not mean to wander away from his chair, he literally sometimes just forgets to stay sitting. He likes it; if it slips off during dinner, he will pick it up and put it back on his lap.

I made this one. It took about a half yard of fabric and 7-8 bags of dried kidney beans. Ours is pretty heavy, but it will be easy to cut the end open, remove some beans, and make it lighter as we wean him off of it. A quicker solution is a pillow case filled with beans or rice, knotted at the end. The purpose is the same, a physical reminder to help a child remain seated. Its very useful for a child with autism, but would be good for anyone.

Wiggly kids in church? How ’bout a Catholic Sitter?

Wandering kids in the doctors office waiting room? Try a Sickie Sitter!

Overzealous parents jumping up and down and jiggling your Diet Coke bottle as you sit in the bleachers at your kids baseball game? Slap on an Inconsiderate Idiot Sitter!

Know what guarantees a bad day?  Having to see your 5 year old wearing bus safety harness that makes him look like a parachutist caught in a tree.

This happened yesterday and it was a hard afternoon for me.

Pookie rides a bus to preschool, a regular yellow school bus, with lapbelts.  On the way to school, he likes to sit in the way back row, on the drivers side.  He has ridden the bus for almos 2 years and things have gone well. He wet his pants on the bus once or twice.  He refuses to wave to me in the window.  But, all in all, an OK experience. 

On the Monday and Tuesday after Spring Break he was naughty on the bus.  He unbuckles his seat belt.  He stood on his seat and leaned over the seat in front.  He changed seats, he crawled on the floor.  He had done this type of thing one other time this year, but I talked to him and he stopped.  His actions on Tuesday really freaked out the bus driver.  She is a nice lady, but she (understandably) got upset when he stood on the seat and tried to sommersault over the seat in front of him. 

So, the transportation department called me and they recommended that he wear a harness on the bus.  Recommended, but really demanded because if he refuses and does it one more time, they will deny him bus service.  It was right after Spring Break and I know he is a bit more animated this week because he is not back into his routine yet. So, I thought if we talked to him it would settle down and we would not need to do the harness.  I figured by the time they got their act together and got the harness he would be behaving.

Well, the bus driver showed up yesterday with the harness.  Less than 24 hour turn around.  We agreed to let him ride to school in the harness, but wanted to talk to the transportation department about options.  This harness is a canvas vest with 4 steel rings, one at each shoulder and one at each hip.  The steel rings clip on to hooks mounted on the seat.  So, he is literally bolted to the bus seat.  He could not even move to touch his shoes.  Its not a nice thing to see your kid in.  But, the transportation people said it was the only option.

I made some phone calls and got the transportation people to hear me out.  I explained that we did not want the harness because we wanted him to learn to behave without props.  He never misbehaves in a car and actually never misbehaves on the afternoon bus, just that route.  The transportation director understood our goals.  I asked her if I could sew a sleeve for the seat belt buckle.  I think that if the buckle is covered, he won’t mess with it.  They agreed to let us try.

So, last night Pookie and I went to the fabric store and got some sturdy twill and some velcro.  I made a sleeve to wrap around the seat belt buckle and hide it.  I tucked the sides, so that the unit won’t slide off the seat belt.  We also talked to him about being naughty on the bus.  I do not intend to show him the seat buckle cover or really even talk about it with him.  I do not want him to get too comfortable with it.  I will put it on every day and the teacher will take it off when the bus gets to school.  I don’t want him to touch it at all.  I am hoping that it will be just enough interference to keep him from unbuckling the seatbelt and he will find something else to do on the bus to occupy his time. 

I really hope that it works.  I think it will.  I need it to.  I can’t bear to see him in that harness again. 

I don’t know if you will find any events you can participate in, but no matter where you are, you can think today. 

Think of Pookie and how much we love him. 

Think of how his life will be different, but not invaluable. 

Think of the challenges Geetle and Giggles will face as they try to figure out what they see every day at home. 

Think of BAGD and I and how much extra time, effort, money and stress we face every day. 

Think of Pookie and how he is really happy to be who he is.  Its only the rest of the world who tells him its not quite “normal.”

Think of those “naughty” kids you saw at the mall and the parents that did not seem to even try to “control” them. 

Think about how those parents might be silently parenting the whole time, letting a boy be a boy, letting him blow off some steam, or just taking a break from the minute-by-minute efforts required to parent him. 

Think of how you would be morbidly embarassed if you showed up at a party and someone else was wearing the same dress as you. 

Think about how you want to be unique and stand out in a crowd, but are uncomfortable when someone acts “odd” around you. 

Think about how autism is an illness.  Think about how Pookie never asked for it, but he would rather have autism than not have a voice for singing or strong legs for jumping up and down. 

Think about how glad you are that society accepts us and our family and friends love us no matter what. 

If you want to do something for Autism today.  Send a few bucks to a charity searching for a cure.  I don’t know any, because I don’t have time to join the movement; I am too busy raising my kids.  The work they do is important and because I don’t have time to send them my efforts or money, I would be glad if you did. 

But if you really want to do something for autism today, seek out someone who will welcome your help personally.  Take a kid to the park, ask a teacher if she wants you to cut out PECS cards, give a parent a break, sincerely smile at a family under stress, pay for a park and rec class with an aide, sit down and draw with a kid, talk back with the echolalia, etc.