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ROOTS AND WINGS

This is a guest post by Liane Kupferberg Carter.

If you ask our son Mickey what he might like to be when he grows up, he will probably say, “A librarian. Or a Pokemon Master!”

There aren’t too many jobs for a crackerjack Nintendo player, but Mickey is learning other skills.  At 18, he attends the Comprehensive Support Program at our local public high school. But no one program can ever be fully comprehensive. We also run a home-based program to address self-help goals, and send him three mornings a week to a vocational and life skills program at an A.B.A.-based learning center.

At home and at both his schools, we work on such tasks as making a grocery list and food shopping; speaking appropriately in a store, bank or restaurant; waiting in line; giving the cashier the correct amount of money, and waiting for change. We practice answering a phone and taking a message; doing a load of laundry or unloading the dishwasher; following a recipe, measuring ingredients, and discussing the food pyramid. (No matter how much he insists, chocolate mousse cake isn’t a source of protein.)

Last year, Mickey was proud of his job at our town library, where he alphabetized and shelved DVDs. He has also liked sorting mail for the high school office staff and distributing newspapers to classrooms, singing out a cheery, “Speedy Delivery!” each time.  With the assistance of a job coach this year, he does data entry at the Red Cross one morning a week. He is building a resumé of work experiences.

But his biggest challenge isn’t acquiring basic work skills; it’s learning social behaviors in the community and in the work place, such as greeting others appropriately, modulating his voice, or knowing that if a task gets too challenging, you don’t say, “I’m out of here!” and make a run for it.

His dad and I have dealt with the mechanics of protecting Mickey’s future: we’ve created a special needs trust, rewritten our wills, and petitioned the court for legal guardianship. But there are still fears that make my heart race. What happens three years from now when that little yellow school bus stops coming to our front door? How do we build a full life for him after high school?  Where will he live? He has had seizures for many years; even now they are not fully under control. How will that impede his desire for greater independence? And what of our ultimate dread: who will love him when we are gone?

When Mickey was diagnosed 16 years ago, there was no road map to tell us what lay ahead. In the years since, Autism Speaks stepped in to fill that need with the 100 Day Kit, a tool that gives families the critical information they need after a child has been diagnosed with autism.  Parents of children aging out of the school system face a similar juncture, standing at the foot of a mountain that can look insurmountable. The new Transition Tool Kit will given them the traction they’ll need for the climb.

All parents want the same things for all their children: loving friends, good health, work that is meaningful to them. One of my favorite quotes on parenting is this: “There are two lasting bequests we can give our children. One is roots. The other is wings.”

We are giving Mickey all the grounding and love we have. We hope he will soar.

  1. February 3, 2011 at 3:35 pm | #1

    YAY, Lianne, and thank you for giving us a glimpse of your life and dedication!!!

  2. February 3, 2011 at 4:53 pm | #2

    Amazing strength! Your son is very lucky to have you as his parents…you have clearly given him all the right tools his soul will need to soar :)

  3. bari
    February 3, 2011 at 5:57 pm | #3

    wonderful, as always!

  4. Lori Williams
    February 3, 2011 at 9:05 pm | #4

    I think about these things every day, and my son is 5! Hes still non verbal but as each day goes on I always think about everything that you guys think about also! Truely brought tears to my eyes! Hes lucky to have both of you guys! We actually just started a trust fund for my son as well! Thanks for you inspiration!

  5. February 4, 2011 at 5:10 pm | #5

    Thanks for sharing a slice of your life. As my son gets closer to being a tween, I realize that makes him closer to being a grown man too…and there many details to take care of.

  6. February 4, 2011 at 6:52 pm | #6

    My son is 16 & I think about these things, as well. Thanks for sharing your story. It helps to know there are others in a similar situation.

  7. sharon kish
    February 4, 2011 at 8:53 pm | #7

    Our 32 yr old son is developmentally delayed. Thesse individuals have varying degrees of autism. The scariest time of our lives was letting our son transition to a Group Home 10 yrs ago. Andy works in a Sheltered Workshop and just recently moved to a semi-independent apartment with 2 other men. He cooks, cleans, launders his clothes, goes into the community (always with someone) and is as independent as his brothers. Andy borders between moderate and severe mentally challenged. Every day I want him to move home, and every day I understand just how much his freedom means to him and how much he needs to live this way. His brothers and sister would take him into their homes in a heartbeat, but they, too, know this is what is best for Andy. Andy is happy and social. As my husband and I grow older we know we cannot delegate Andy to a slower lifestyle and less socializing. You will be facing difficult decisions in the near future and I ask that you consider all aspects of your sons’ life and what opportunities there may be for him. Best wishes to all of you!

    • Robin
      April 9, 2011 at 5:07 pm | #8

      Hi,

      I read your post and am in the process of trying to decide at what point I should move my 14 year old autistic daughter out of a academic program to a vocational/life skills program. She is entering 9th grade in September and we are looking at a bunch of programs. The one the district is pushing is mostly a vocational track. I know my daughter needs that but she is hasn’t plateaued yet in language arts and I am reluctant to totally give that up since she is an avid reader and it is her strength. The program also says her IEP is too heavy on related services and we need to readjust those as well. Yet no service provider has come to us and mentioned doing that.

      Any advice/thoughts/suggestions would be greatly appreciated!

      Robin

  8. Cathy
    February 5, 2011 at 7:38 am | #9

    Thank you for sharing a part of your life. I am glad to know there is a new Transition Tool Kit. I think thats great.

  9. DawnMarie Nasi
    February 5, 2011 at 9:01 am | #10

    I have twins sons who are hearing impaired, adhd and high functioning PDD.. The youngest twin does not sweat and the oldest twin also has OCD tendencies.
    They are very loving but challenging little boys. They are always on the go. My problem is that they are high functioning the schools just cares if they can walk the straight line in school. Then they are “JUST FINE”.
    Well im also a special education teacher and i know my sons are not just fine. They see a developmentalist almost every month. They take meds for their adhd(which is severe) and for anxiety in social situations. My oldest twin Vincent cant hold a relationship. He is obsessive with batteries, fans anything that runs on power and waterfalls. He would rather build a waterfall in our fard then play with the kids that come over. Teachers say oh he talks to kids. I say Im not asking if he can ask to pass a glue stick, I know he can do that. Five years of speech and a teacher of the deaf as well as a deaf school will take care of that. Im asking, does he take a friend by the hand and ask them to play. They said Oh we did notice that well have to watch.
    My sons sleeps with batteries, chargers and whatever else he can scramble into his bed. He wont eat at class parties because they are too many people around him.
    The little twin Dominick is trying to make friends but its a one person zone.
    We have to plan every minute of our day when we go out to see who will push the elevator door first outside then the one inside, who will open the doors ect. Forget about Halloween, every year Vincent has a melt down on the lawns because he needs to be the first to ring the doorbell.
    So although my sons have come a long long way. I want teachers to see them through my eyes and get them the help they need. So they can have meaningful relationships in their lives. Thats all I want for them, to function, to be happy and to be able to feel the satisfaction of a friend.

    • Bonnie
      February 13, 2011 at 4:50 pm | #11

      I Mananger programs for adults with intellectual disabilities but I am also a mom with two boys with adhd. I spend my days trying to convince people that individuals with ID have abilities and spend my days trying to convince the school that even though my sons are both bright they also have challenges. Dawn marie I truly understand.

    • Shayla Alex
      February 17, 2011 at 10:25 pm | #12

      I have a 12 year that was diagnosed with ADHD, COBD (child onset bipolar disorder) and Aspergers! Talk about a combo!!!! The older my son gets, the more challenging life has become! The social differences become more difficult, and they are no longer healed with a kiss from mom & loving wordings! My son has become extremely violent and depressed. He’s been telling me sincehe was in kindergarten that he wished he could die because in heaven everyone loves you. I moved from one side of the state to the other just for better Dr. and services… and I will never give up! But it seems no matter how hard I try, things aren’t getting better! He’s too old for daycare (and too big & violent), yet not responsible enough to stay home alone. He’s too high functioning for mentally handicapped services, yet too immature to take care of himself! I’m a single mom – so I have to work full time! I know your frustrations, Dawn! I wish I had answers for all of our kiddos concerns! I just want him to be happy, productive and feel good every day! I never thought wanting that for my child would seem like praying for a miracle!

      Stay strong, Dawn! Your boys will mature and some things will get easier… and somethings will get hard. But that is progress… which all we can ask for at the end of the day!

      ~Shayla

  10. Janet
    February 5, 2011 at 5:10 pm | #13

    I am a special ed teacher in a school system with much programming for children with autism..I’m glad that there is transition and assistance until 21. A friend’s daughter with special needs has transitioned to an independent home situation with success..she has some independence, and yet visits frequently with parents, as with any young adult.
    I so admire all of your compassion and the planning it takes to ensure the best future for your child.I think that there is a growing understanding of autism and other special needs..in school, there is sometimes a disconnect as some kids do not qualify for ‘special instruction’, but most should qualify for 504( regular ed with even more rights sometimes than sped) and be eligible for services such as OT, speech and counseling, social groups, etc. God Bless -all you parents are special..He knew that.

  11. February 5, 2011 at 6:14 pm | #14

    glad to hear that it gets better. trying for my son to eat healthier because he slowed downed only eating four foods.sleeping seems now to be getting worse .my son is going on 8yrs and i fear his speech gets better so he socially get better and for me too.

  12. Cassie K.
    February 6, 2011 at 12:36 pm | #15

    Your son sounds a lot like my little brother. He is also dealing with the things you said in this blog. I work with him every day. Thank you so much for sharing your blog. For some it will help them understand and for those who are going thru the same things it will let us know we are not alone. Thank you so much. God bless you and your wonderful family.

  13. February 6, 2011 at 3:15 pm | #16

    How very deeply these comments touch the heart, Of all parents, Grandparents and family,having two grandsons with autism,Their parents go the extra mile, to provide the best help in all situations, needs, and life skills.with no other choices available to us, Into Gods hand we place them, No one knows their future. we only know we share these worries with many who are dealing with this dreaded disease . God bless you-We love you.

  14. lizzie
    February 6, 2011 at 10:26 pm | #17

    my little sister has autism too..

  15. Margaret
    February 7, 2011 at 12:47 pm | #18

    This brought tears to my eyes, I am walking that same road with my boys and the fears are all too real as they are growing up, I know it sounds selfish but I miss the days of sheltered bliss with my boys…when I was able to control and protect.

  16. Glenn
    February 8, 2011 at 10:23 am | #19

    Great story. Thank you for the to-do list as well. There are a few things on there that i haven’t gotten to yet…always great to know I am not alone…

  17. S Dabney
    February 9, 2011 at 10:17 am | #20

    I just wanted to say thank you. That was really touching, and it opens yours eyes and make you think and put a lot of things in perspective. My son is only 4 years old and was diagnosed when he was 20 months with Autism, they say early intervention is the key, but I have put my needs aside and put him first and foremost, faithfully taking him to spech, physical, and occupational therapy three times a week, since he was 2, and he is still non-verbal, and I long to communicate with him. It’s so nice to hear stories where Autistic children are blossoming into wonderful adults, and can live normally as possible in a society where some people just don’t understand what means to have a disability.

  18. pamie
    February 9, 2011 at 10:23 pm | #21

    THANK YOU FOR SHARING YOUR STORY. IT MADE ME THINK. I HAVE A TEEN BOY. I HAVE BEEN WORRIED ABOUT WHAT WILL HAPPEN TO HIM WHEN HE GRADUATE. I HAVE SAID I WAS GOING TO KEEP HIM WITH ME AT HOME. I CAN SEE THAT WILL BE CRIPPLING HIM. HE NEED TO TRY TO BE ON HIS OWN. IT IS SO HARD TO LET GO. I THANK YOU FOR THE TO DO LIST. THAT IS A BIG HELP. IT IS GOOD TO KNOW THAT I AM NOT ALONE. GOD BLESS YOU!

  19. KIMBERLY VANDYKE
    February 11, 2011 at 7:42 pm | #22

    THANK YOU FOR SHARING YOUR STORY ALSO. I TOO HAVE A AUSTIC SON. HE’S 17. AND IN HIGH SCHOOL. HE WILL BE A SENIOR NEXT NEXT. I NOTICE SOMETHING WAS RIGHT WITH HIM WHEN HE WAS 6MOS. NO EYE CONTACT, NO CRYING AT ALL. BUT WITH THE HELP OF THE SCHOOL I PUT HIM IN BELLE HAVEN ELEM. IN DAYTON, OHIO FROM THE TIME HE WAS IN KINDERGARTEN TO EIGHT GRADE HE SOARED IN EVERYWAY POSSIBLE. FROM THAT POINT ON HE HAS NEVER LET ANYTHING GET IN HIS WAY. JUST THE OTHER DAY I ASKED HIM(DARRION) WHAT COLLEGE ARE YOU GOING TO AFTER YOU GRADUATE. HE SAID WRIGHT STATE. I SAID REALLY. HE SAID YES MOM, THEN I SAID WHAT ARE YOU GOING TO STUDY? AND MY JOY (DARRION) SAID I’M GOING TO BE A SCIENTIST OF SPACE AND ONE DAY WORK AT NASA. I WAS BLOWED AWAY. I HAD NO IDEA HE THOUGHT THAT FAR AHEAD. SINCE HE HAS BEEN IN SCHOOL HE’S EXCEL AT EVERYTHING. AND HE IS IN AND ALWAYS BEEN IN PUBLIC SCHOOL. ONE THAT I AM PROUD OF TO THIS VERY DAY. DAYTON PUBLIC SCHOOL- BELLE HAVEN. THANKS TO THE CARING STAFF AT THIS SCHOOL MY JOY(DARRION) HAS BEEN GREAT GRADES. AND I THINK THIS IS THE 3RD TIME HE’S MADE HONOR ROLL. ALL A’S. THANK YOU GOD FOR GIVING ME THIS YOUNG MAN. MY JOY, MY LIFE, MY SON, DARRION:)

  20. February 12, 2011 at 4:59 am | #23

    Hi- I am desperately trying to find a phone # or email contact for the Traverse City, Michigan Autism group. If anyone has this info, please pass along. I want to volunteer and have strong community ties and wish to promote fund raisers. I have called several people, who have all passed me on to someone else, to someone else, whoo has not returned my call. Help!!! 231-313-0658

  21. Cathy Lickner
    February 12, 2011 at 11:06 am | #24

    I have a son who is autistic and I love him to death.He is special to me and was made special for me by God. I thank God every day I spend with him.He is such a joy to be with and he does have his moment’s but who doesn’t.He makes me laugh and he always tell’s me how wonderful I look and that touch’s my heart.I couldn’t ask for a wonderful son.I’m taking care of him on my own and have no one that help’s. His dad choose not to be in his life and that’s ok we have each other.My family loves him as well. I have 3 other kid’s.I lost my oldest and my other 2 are protective of their brother.It get’s ruff at time’s and I just want to cry when thing’s go wrong but I don’t. I try to take a deep breath and go on.It’s not easy taking care of an autistic child by yourself. My son will 22 this month and I wouldn’t trade him for anything in the world.

  22. concernedsister
    February 12, 2011 at 3:07 pm | #25

    Your story has really helped me put my brother’s situation into perspective. I am his older sister, I am 18 and going off to college in the fall and am concerned for my younger autistic brother who is 16 since I am going away to college. My brother attends my high school and has an aid for some classes and is very smart in math and science, but has alot of trouble with english. He takes a skills building class that teaches him how to do laundry, balance a check book and cook simple meals like pasta. He has some friends and appears “normal”, but he stutters alot and processes slowly. I dont know where he will be after high school, and that concerns me because I only want the best for him, and I want him to be able to find a job and be successful in life. In this economy I have no idea how he would even get a job, considering the fact that millions cant who aren’t on the spectrum. I trust my parents to make decisions, but while growing up, I was always the one pushing my parents to buy him clothes to make him fit in, allow him to go to the movies by himself with his friends, and I just dont want him not to be able to reach his potential, because I really believe in him and love him. Thank you for sharing your story, because it helps me be reassured that there are programs for autistic children after high school, and it gives me hope that my brother can get a job and survive without me, until I graduate.

  23. Dorothy Holderfield
    February 13, 2011 at 2:04 pm | #26

    As a grandparents of 3 autistic grandsons we can fully appreciate the challenges that parents go through day by day. Our oldest grandson is 13 and is a whiz at xbox 360,the next one is 10 and he has day to day issues because he gets very frustrated and can’t tell you what is wrong, and then the 8 year old is the opposite and very easy going. Only God can tell us what is in store for these 3 precious boys. We love them very much.

  24. Chelsea
    February 14, 2011 at 9:29 am | #27

    As a mother of a soon to be 10 yr old child on the Autism spectrum I myself find myself asking how will he manage after highschool. What will he do for work.He wants to go to college and be as normal as a person can be and he is so determined to succeed. He is great at history,maps and remembering dates. He too struggles with the everyday social behavior and not having tantrums and giving up when things don’t go the way he needs them too. My son is my world as well as my other 2 children who are perfectly normal in everyway. Not that my son is not normal because to me he is as normal and loving as my other two just with many more challanges to face then them. God gave me a challange and I am here to say bring it on I can do this its not my fault he was born this way I did everything by the book as with my other 2 and they don’t face the challange he does but then why me why my family and why anyone elses my friends baby born the same year as my son 3 months apart was also born with Autism far worse then my son. But as the strong willed parents we are because god knows you have to be we shall overcome

  25. Jana
    February 14, 2011 at 6:35 pm | #28

    Thank you for such a wonderful story. We adopted our grandson when he was 3. He is now 15 and they have all those services in our schools. We live in Oregon. He is also on the Autism spectum. I am glad there is a kit we can get to help after school is out. We also worry about what is going to happen after school. And at our age we really worry. Thanks again for your letter and your words of wisdom.

  26. Kimberly Borrelli
    February 15, 2011 at 7:13 pm | #29

    Enjoyed reading this blog … I am a mother of a seventeen yr. old on the Autism Spectrum! Add me if you have facebook! :)

  27. Mary Boitano Gutierrez
    February 16, 2011 at 10:19 am | #30

    I am the mother of 3. Two of which are on the spectrum. One, Dana, w/ Autism, the other, Ryan, w/ Asperger’s Syndrome. Dana, 15, would like to live @ Disneyland with who she calls her “real” family. Ryan, who at 14 gets almost every question correct on Jeopardy, would love to stay in his room forever with his computer, PS3, and TV. We are hoping to enroll him @ The Orion Academy in Moraga CA for High School because, desite Spec. Ed., public HS w/out a 1:1 aide scares the heck out of us! It seemed like an amazing place although driving 1000 miles a weelk won’t be fun for either of us, Thank God for XM and car DVD. It’s always great to communicate w/ others who “get” my life. So, thanks for listening! I’m on FB too! Feel free to add me!

  28. Sonya
    February 16, 2011 at 10:32 am | #31

    Tears are flowing from my eyes as I read your post. My husband and I just had one of many serious conversations about our 6 year old son’s future yesterday. We are both very active working parents and it is becoming more and more difficult to keep up with everything. So, I have made the decision to become a stay at home mom. My son is nonverbal and is very dependent. We love him very much and want only the best for him. The question of Who will care for him when we’re gone has ran through my mind so many times. This is why I made the decision to make myself completely available to him, thus becoming a stay at home mom. My hope is that we can help him become as independent as possible before he enters adulthood. Thanks for sharing your inspirational story. It really helps to hear the success stories of people with autism.

  29. kim
    February 16, 2011 at 12:33 pm | #32

    thank you

  30. Billie Campbell
    February 16, 2011 at 3:05 pm | #33

    Thank youso much for that, i have an autistic son who is 9 but he doesnt live with me at this point, my husband i just recenttly married and i are planning on him comming to Nebraska to live with us and i know its going to be hard but it is such a reward to help him learn new and differnet things
    Thank You,
    Billie Campbell
    921 Daybreak Dr
    Lincoln Ne 68505

  31. Sonja Wendt
    February 20, 2011 at 10:28 am | #34

    Your article title says it all in a very eloquent way.
    We are grandparents of a wonderful 4 1/2 year old boy who, thus far, is nonverbal.
    Our hopes are high, but obviously we won’t be around by the time he reaches his teens. His parents will have that joy and that challenge.

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