Autism and College

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We have worked hard for this moment.  All of us. When your child has autism the old adage is really true…it does takes a village.

Our family has spent years going to therapists, doing nightly neuro-therapy, hippo therapy, social skills classes, ABA therapy, special autism programs and attending IEP’s galore.

And then one day it happens…it all pays off.

Today, Andre received his first acceptance letter into college. Frankly, it feels like a miracle. All the sacrifice. All the sleepless nights. All the arguments about taking pride in what you do. All the school calls about his behaviors and going there, not to bring him home, but to force him to clean up the school yard if he wouldn’t cooperate and listen to the teacher. No rewarding bad behavior here!

Admittedly, there were days we weren’t sure if we would make it….all of us…parents, kid, and teachers. For Andre, an uncovered classroom window meant watching the birds instead of listening to instructions. His life consisted of figit boxes, weighted vests, and mechanical pencils of a particular type or he could not concentrate in order to do his work. Autism combined with ADD makes sitting still incredibly hard, listening very difficult, and organizing darn near impossible. His narrow list of interests and the thought he shouldn’t have to learn what he didn’t deem important made his teachers want to pull their hair out. But still he persevered and so did they.

Four years ago he received Boy Scouts highest award…The Medal of Honor…for saving an  elderly ladies life. Last year he became an Eagle Scout and immediately stopped going. Most of the time he stays in his room drawing characters for the novels he has been writing for the past several years. And not because I am his mom, but because it is the truth, his books are really good.

I don’t know if Andre will go off to school come fall. He might delay leaving home for another year so that he can finish his Associates Degree that he started working on in high school and allow himself the time to mature another year. Sometimes I think he might be ready. Lots of time…not…especially when I realized he has not showered for a week, brushed his teeth for days, changed his underwear since he last showered or remembered to take his medicines since I last reminded him. Frankly, he is several years behind his peers maturity-wise so he has some catching up to do but then again sometimes the birds that soar are the ones that are kicked out of the nest missing a few feathers.

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As I look back over the years the times of despair were many. The worry was great. The uncertainty was sometimes crippling. Sleep was lacking. But Autism didn’t defeat us then and it won’t in the future. The village has got this but more and more it’s up to Andre now. And you know what…he can do it. For autism no longer defines Andre… he defines it. With a little help and understanding my son will reach his full potential. It may be a life that is different from what I envision or what I would want for myself but it will have meaning for him, purpose and joy. And that is what really matters anyway.

 

 

Envision

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Tomorrow starts Gracie’s 5th competitive diving season. This afternoon, B took her to down to the city where it is being held. She competes at 8 a.m. which, if you ask me, is an ungodly hour to expect anyone to do anything well… especially a sport. Heck, I can’t even root her on before nine because the caffeine hasn’t kicked in yet.

This year Gracie moved up a level and she is getting to be at the top of her division. Only one level to go and she goes into elite. At 13 yo it is a heavy load to carry. She goes to school all day, the final bell rings at 3:15 p.m. and by 4 p.m. she is in the pool working until 8 p.m. five days per week.  But she loves it. Added bonus: I consider it good birth control….there are no boys around this little lady EVER.

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I rarely go to watch her workout anymore. The dives she is doing scare me and I’ve noticed that the kids who cry and get upset all the time are the ones whose mothers are always there watching.  I believe that she doesn’t need the added pressure of doing good for her mom. I want her to do good for herself. That is enough. And if she’s off… who cares… in a week we won’t even remember her scores. This is my part of her sport…trying to walk the line between letting her know that I care but that it is never the end of the world if you struggle or end up last. Sometimes you just do what you do for the fun of it and because YOU LOVE to do it. That has worth in of itself.

Tomorrow Gracie will compete doing a dive that has been giving her a lot of trouble lately. Before she left with her dad I reminded her to ENVISION herself doing the dive perfectly and to BELIEVE that she will do it. I will call her in the morning and play the song from ROCKY (Fly) which is a tradition in which she rolls her eyes and says “please, not again.” That is what I will miss seeing. And then whatever happens will happen. It is all good. Either way she gains confidence, learns to strive for what she wants and starts to trust herself which will carry over for the rest of her life.

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So…. GO, GRACIE, GO! Envision! Believe! And go for it! You have nothing to lose. In my book you are hard-working, dedicated young lady and I will always be proud of you no matter how you do!

Love,

Your Number One Fan (who is already missing you!)

 

P.S. She earned a 1st place, a 2nd place and a 7th. She amazes me!

 

 

 

“FOR YOUR OWN GOOD” List

I don’t know about you, but there seems to be an exclusive list that it handed to each woman during the heat of labor which is promptly and conveniently ignored until the first child heads off to school. It is then, during Kindergarten Round Up, that you realize that every parent in the building decides what kind of person you are after watching your child interact for exactly 4.2 seconds and he is doomed to be a social pariah for the rest of his educational career. It is then, at that exact minute of total mom failure, that THE LIST suddenly re-emerges only to hang over our heads for eternity, flapping in that empty space that our brains used to occupy.
Every mother knows about THE LIST. It consists of all the things our kids must do at least once so that we can check the box that verifies to the world that we ARE A GOOD MOM.
Trying new food. The latest…brocollini….images-1
Yearly pictures at Sears…oops missed that one…but now that I am aware of that fact so by next Tuesday it will be done…semi-check.
Playing the piano and while he may not ready for Carnegie Hall, he does know where middle C is located…images-1
Now B is the sports minded one in our family but because two of our three children get crazed if something as small as an ant touches them, trying to knock out athletic activities…well… it’s a challenge. If I had my druthers I would just scratch that whole section off THE LIST because several family members consider high quality endurance sports akin to laying on the couch and dipping ruffled potato chips into a savory dip. (the endurance part comes when you have to turn the chip around and dip again being careful not to double-dip)
But I have to admit that I do have a fear that scratch outs might just not get you into heaven so I persist in introducing my kids to new sports, knowing in my heart of hearts, that is what all GOOD moms do. That feel-good, doing-the-right-thing, going for Mother Of The Year, attempt is what lead us to the Broken Leg Ice Skating Rink yesterday afternoon where the kids tried ice skating for the very first time.
 I will admit that sometimes it seems as though it takes a while for my kids to get comfortable with new activities. First, we have to check out each and every toilet in the entire facility. If the seat is comfortable then my kids might give it a try. If not, we are OUTTA there thanks to Andre’s unrelenting complaints about the lack of high-quality plastic engineering.
Next comes the vending machines. Anything that has hidden ingredients that make one of my kids break out in hives is considered an immediate success and suddenly every one wants a buck to insert into the machine as they rapidly make their way towards anaphylactic shock.
Finally, throw in a 16-year-old cashier who is making minimum wage but will answer every one of the 20,000 questions thrown at them about the history of said sport…the equipment used and the rules of the sport, then participation is a definite maybe because all bets are on that they can continue with the questions until the place closes for the evening. Better yet, if the cashier can quote numerous safety statistics; then its a go-home because no sport is even safe enough for my boys. Yes, even contemplating sports can be an exhausting endeavor.
So after spending one half- hour tying and re-tying the skates, using the bathroom…for the third time… and learning to walk on blades; the time had come for the kids to make their way onto the ice. If, as the old adage goes, you can smell fear; then the fumes around our family was like the pungent odor that follows us around for three hours after eating grandma’s chili. We just couldn’t shake it. As we left the bench, feet started going every which way but forward and the sound of our bottoms slapping the ice…HARD… reverberated throughout the arena. To top it off, I pulled my back out trying to hold up one child while falling down with another. Mom was done and judging from the little faces surrounding me, the vending machine owner was about to become a very rich man. AGAIN.
Yet, we persisted. Paul put his game face on and after one trip around the rink fell and got a bloody nose that spurted ten feet.  Gracie whined until her daddy escorted her like the princess she is around the rink. But I knew all was lost in regards to Andre when he spent ten minutes making it half-way around the rink with his toes turned in towards the wood paneling the entire time. Never have a seen a child so happy as when he took his blades off of the ice. His face actually beamed so brightly he was in danger of melting the ice.
Later, after exiting the rink, Andre looked up at me and said, “Well, those were absolutely the worst minutes I have ever spent in my entire life!” And needless to say, his assessment didn’t get any better despite being bribed with hot chocolate by B.
On the way home, Andre talked about the experience. His take?
“Well, I am glad that is over. I did it once, it’s a no-go and thank goodness I will never have to do that again. Now, mom, what else can we cross of your list of things I have to do?”
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“What list?””You know, the one that you have that makes me try everything for my own good even though we both know I am going to hate it. But still you try. Again and again. Pushing me to be a better kid so you can feel better about yourself as a mom. So really, if you think about it, this list is really about you and your feelings of inadequacy. Frankly, I think a therapist for you would cost a whole lot less than this “contrived family time.” I think that is something you need to seriously contemplate before one of us dies during these little mini-olympics of yours.”

And with that he was done.
But I’m not.
I want to know… how he knew about… THE LIST?
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Dear Teacher…

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To My Child’s Teacher:

I wanted to make you aware of something you may not have considered in regards to these “Where I Came From” type of assignments. My daughter does not have a birth picture as most international adoptees do not. This can be very painful to some adoptees when class assignments such as this come around. My daughter was born in Korea where children are adopted in a very legal and orderly manner with children being placed with agencies after birth. Yet, part of her past is missing. And some kids from China are left in public places as it is against the law for parents to abandon a child and in that culture the gender of choice is male. Therefore, often girls are abandoned. In addition, due to the one child policy; abandonment happens to females in high numbers. These children often struggle with the fact that they were “left” somewhere.

In addition, having to include a story of their birth is very difficult because many children who are adopted have no clue about the story of their birth. They can’t say things like my mother ate pickles during pregnancy and cried and cried when I was born. They have no idea of the circumstances of their birth except that in many countires it is one of disgrace and shame. Instead of their birth being a happy time many adoptees feel that it is a time of sorrow where they lost their identity and their heritage.

My daughter cannot answer the questions of the hospital where she was born and who came to see her and how her mother felt. We can answer those questions from when we first saw her picture at three months and when she came home at almost 8 months but this seperates her out from the other kids. In addition, we only encourage her to share what she knows of her birth story with people she wants to and frankly it is not appropriate for just anyone to know nor it is not everyone’s business to know the circumstances of her birth.

These kinds of assignments can be hurtful to adoptees or children who come from “different” families other than a two parent mom and dad type of family. Many kids now come from gay families and may not be comfortable sharing that. Many kids now come from single mother with unknown fathers and may not be comfortable sharing that. Many children come from foster families and had abusive first parents who may have told them over and over things like, “I wish you had not been born.” Many times the birth of a child is not a “happy” time in a family and a child may know that. While the jist of these assignments are made with the noblest of intentions, in reality, these types of assignments are often uncomfortable and hurtful for children.

Just wanted you to consider this from another point of view.

Eat Chocolate Cake

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The school called today

Andre didn’t turn in his homework

He said he burned his book

I don’t think so but…

I eat chocolate cake while I contemplate the situation.

The other school called about Paul

The teacher tells me there is a group issue

Paul is missing assignments

I will check and let you know….but first

I eat chocolate cake before digging around in his room

I go to the school to discuss the situation

I let all involved know

That Andre will be staying after school in the tutoring room

Everyday until all the assignments are done

He clings and claws at me

He baby talks and pouts

I escape and walk around campus

And eat that emergency piece…

Of chocolate cake

That I tucked in my purse

Really this is getting too much to manage

Maybe I should turn to booze

And give up the chocolate cake

We get home

Paul is upset because I insist that he does his chore

That he did not do before he went to school

Man, that chocolate cake looks good…tastes better than it looks

Two boys with autism

One deep dark chocolate cake

Almost gone…

Autism makes you fat!

“Perfect” Words

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I have been working hard to use the “perfect” words and phrases in my everyday interactions in order to minimize conflict and optimize understanding. Our therapists say to try to increase our usage of them everyday. Here they are:

  1. I love it when______
  2. Help me understand
  3. What would make it easier for you?
  4. I just got triggered and I feel ______
  5. Can I have a re-do? (Meaning you screwed up and would like to try again)
  6. I am not comfortable with______. Perhaps we can try ______ instead. How do you feel about that?
  7. I have a concern about_____
  8. I heard you say _____ and I am wondering what you mean by that.
  9. I am trying to understand please tell me more.

 

I have to say some of them work better than others. It seems like the “I like it when…” phrase often brings about the desired results and by saying “What would make it easier for you?” I get to know exactly what would be the most beneficial thing I could for B at that moment in time.

Last night I tried the “I have a concern about…” and it bombed…BIG TIME. Not only did  I feel like my words had exploded in my face and I had been cut by shrapnel; I ended up feeling like a fire work that just wanted to explode…light the fuse…I dare you. Let me explain.

The kids started school two weeks ago and it has been absolute chaos. Between each kid being at a different school,  two carpools, and one kid also taking a college class in addition to normal high school work; the hectic threshold has increased 20 fold in his house. Already I have gotten two phone calls and two emails from Andre’s school, one from Gracie’s and have had to contact Paul’s school three times for various things in addition to talking to the counselor. Add to that book marking each kids classes(12 total) so we can check on homework every night finding/loading emails for teachers and two IEP teams…well let’s just say that it has been a challenge.

So last night when I got home late after being voted in as secretary of a school organization (more about that some other time) I found B watching the Olympics which then proceeded to his playing of the bagpipes. Meanwhile, I went upstairs to ensure that Andre was doing his homework and spent 30 minutes going through all his class websites with him after getting a call from school earlier in the day. I spent another 20 minutes re-organizing his notebooks for what I hope is greater understanding of where papers/homework are and where handouts should go. I did the same  last night with Paul who seems to not be getting any homework… hmmm. Had to check on that too.

As I climbed into bed, after thinking long and hard about how I wanted to approach the issue, I said to B:

“I have a concern about ______ (“using “perfect” word phrase) how we are going to get the boys through school this year.(Two boys who have autism and face many challenges when in school) So far I have received several emails and phone calls from the schools and since the boys are both in high school now, where even more is expected of them; I think we need to come up with a plan on how we are going to handle this because I can’t do it all. If you have any ideas about this I would be glad to hear them. This is what I was thinking. I was thinking that perhaps I could be responsible for Andre and checking his classes and that you could do the same for Paul. If there was math homework that help was needed on you could do that (I don’t do math) and English would be my responsibility. What do you think? Or do you have something else in mind?”

“I work from 7 am to 6 pm. I can’t do it.”

CANCEL CANCEL CANCEL  (To find out what this means ) Read Sitting In the Silence

“Well, honey, I work too. I drive two carpools, answer calls and emails from the school, pay bills, clean house. I work too. I’m sorry, you don’t get to just hang up all the responsibilities of this household when you walk in the door.”

And so it went.

Later I told him, “You know I worked very hard thinking about how to say what needed to be said in a way that was non-confrontational using the words/phrases our therapists taught us and I feel like you just shot me down. I am very disappointed about how this went.”

“You are entitled to your feelings. Feelings are neither right nor wrong,” which is B’s new catch phrase.

Yeah, well, buddy… my feelings are now ones of being pissed and angry at your feelings of entitlement and your lack of sensitivity that I am trying my best to have a calm discussion with you to get what we both want/need for our boys. I am also thinking that if we had divorced you would be getting half of these calls, doing half these carpools and that you would need to hire and pay for wife that you now have for free. An expensive proposition to say the least. Frankly, I would like to kick you in the ass for being such a blockhead.

And so I went downstairs and listened to THREE meditation podcasts in an effort to bring myself back down to earth and re-locate my place of serenity. Afterwards, as I reflected on the day I wondered it there really is such a thing as “perfect words.”

I guess the answer is no…but I will keep trying to use them anyway.

And now I will:

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Mother’s Day

Back-to-School

Today is the first day of school and it is about as good as a man getting down on one knee and slipping a diamond on your finger. For moms all over the world this day sparkles and shines like no other.

I remember each of my children’s first day of Kindergarten. Everyone was excited and a bundle of nerves, parents included. Now it’s old hat as I go through the list that is burned into my brain like a branded cow.

“Do you have your…lunch, notebooks, backpack, pencils, school schedule?”

“Where are your shoes? Did you change your underwear? (yes, this question MUST be asked in my household) Go put on your socks! Hurry! or you will be late!!!”

” You didn’t brush your teeth. Go do it. Andre…the hair…brush your hair! Wait….you didn’t shower, Andre. Don’t argue…DO IT! Paul, go wash your face and put on your medicine. Make your beds!!! What do you mean you don’t like chicken salad…since when?”

And so it goes until all questions have been answered to my satisfaction and off we go, kids slightly nervous and me, the calmest I has been in months with a smile plastered on my face that is wide as the Grand Canyon and remains with me all day. Yes, this feeling is better than any happy pill that has ever been invented!

“You sure sound chipper,” remarks my dad.

“You look great,” another mom comments.

“You have a glow about you!” says the grocery clerk.

And they are right. After a summer of sibling arguments and hearing “I’m Bored;” I have the eau de parfum Ode To School #5 floating about me, the fog has lifted from my brain, and I am glowing more than I ever did when I was pregnant. For today is the first day of school and I happily refer to it as… Mother’s Day!

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