Thursday, April 05, 2007

our story

Today's Oprah is about autism. Maybe you will have a chance to watch it. I heard recently that the show was looking for Chicago area families to participate by sharing their story about living with autism. We didn't make it on to the show, but I would like to share my application with you. I think this explains a lot about me, my family, and "life in a much loved 1950s cape". It's been something that I have wanted to share with you for awhile now, but I didn't know how to. This seemed like the best way to do it.

* * * *

Dear Oprah,

My husband and I have a 5 yr-old son who was diagnosed with autism shortly after his 3rd birthday. He is our oldest child. We also have a 2 1/2 yr-old son who is a typically developing boy.

Bobby is our son with autism. He is a beautiful, fun-loving, sweet child, who was the perfect baby. From the time he was born until well into his toddler hood, we thought his quiet attention to details and his preference for listening and observing were personality characteristics consistent with being a first born child. It was not until the middle of my second pregnancy that my husband Rob and I started to notice that Bobby was not interested in things that other children his age seemed to be: communicating with peers, potty training, and extensive communication with his parents. He was a friendly baby who would smile at us, liked to be hugged and touched, loved to listen to music, look at number and letter puzzles, and run...yet he did not spend much time interacting with us. When he spoke he repeated what we said more than anything. It was as if he enjoyed us from a distance. Our pediatrician at the time told us that Bobby was just shy and needed to be around children more.

After our second son was born, we felt that we needed to pursue our continuing doubts about Bobby's development. Fortunately, we found a pediatrician who guided us down an aggressive path of having Bobby's development evaluated by professionals. We signed him up for an evaluation with the local school district as well as with a private center in town. The process of having Bobby evaluated by both sources lasted for a few months. By the end we had read a lot about developmental delay. Still, it was heart breaking to hear our fears confirmed when a doctor told us that Bobby had autism and that he needed extensive therapy.

Ever since that day, we have devoted our lives to treating and conquering Bobby's autism. We are fortunate to live near the Little Friends Center for Autism, where we have found tremendous resources and support. We are also fortunate to live in a school district that recognizes and provides for children on the autism spectrum. More than anything, we are fortunate for the love and support that we give each other, and for the love and support that we receive from our parents and families.

Overcoming the challenges that autism presents is not an easy task for Bobby. While other children his age are busy playing, Bobby is working. For the past 2 years, Bobby has attended a preschool class through the public school system 5 days a week, where professionals provide speech, occupational therapy, and social skills therapy. He receives ABA therapy 5-6 days a week at home, for 2-3 hours each session. He attends an extra hour of both speech and OT during the week away from home as well. From the moment he wakes up in the morning until he goes to sleep at night, we are constantly working with him on learning something: how to dress himself, how to feed himself, how to perform other self-care tasks that other children know intuitively, how to speak to his brother, how to ask for something using the right words, how to express his needs verbally by using the correct pronouns, how to play with a friend, how to figure out the world. Learning the ins and outs of potty training took about 2 years of constant practice, and has been his biggest accomplishment to date. It is not an exaggeration to say that Bobby’s schedule as a 5 yr-old is busier, more rigorous, and more demanding than some adults we know.

And yet, we press on and challenge him because we see progress every day. Every day we see his potential increasing. His progress is slow, but it’s steady. Bobby has made obvious strides in all the areas that he works in, because he’s got will and determination, love and support around him, and the tools within reach to do it. He can construct full sentences now. He can sit and attend to a teacher at a table and perform multiple tasks when asked. He can draw a circle, square, and sign his name. He can take turns (albeit, sometimes reluctantly) with his younger brother when they both want the same toy. The tasks are not easy, but they become more familiar and routine the more he performs them. In the area of academics, such as (pre)reading and (pre) math skills, Bobby is performing at a level that is superior to other children his age. His biggest challenge, perhaps the area that is his biggest deficit, is maneuvering social situations with a group of people. Next year after kindergarten he will attend a half day social sills program to improve his peer to peer relations. We are confident that Bobby will make the strides in this area that he has in the other areas.

Living with autism is not easy. My husband and I are lucky, because we are on the “same page” when it comes to seeing Bobby’s strengths and weaknesses. Neither one of us is in denial about his condition and the challenges he faces. We get strength from that because we have the same hopes and dreams for him. But from time to time, we still struggle to come to terms with the realities that autism presents. We wish that he could talk to us beyond telling us his wants and needs and observations of what he sees around us. We wish that he could tell us how he feels, what he wonders, what he believes. We know there is a little boy inside that body who has hopes and dreams of his own. We know he probably feels different from other children when he’s around them, and he probably doesn’t know why he is different. We know he has a vivid imagination where he spends most of his time visiting the characters he has met in books or movies. We wish that he could spend more of his time visiting us.

Treating Bobby’s autism has completely changed our lives in terms of how we live on a day-to-day basis. I have chosen to be a stay-at-home mom, but given Bobby’s schedule and his needs, I could not return to work full-time even if I wanted to, because I need to manage his constantly changing and intricate schedule. Meeting other moms during the day is almost impossible because we generally do not have time for play dates or other kid/mom activities. When I am around other moms who have typically developing children, I sometimes find it hard to relate to their daily talk and discussion of what life in their households is like. It can be isolating to experience something that you think no one really understands. I have met a nice group of women who also have children with autism, but I do not see them often, probably once every 2-3 months. In order to combat the loneliness I was feeling during my days, I started a bunco group in my neighborhood. Connecting with women at night – and without kids – has been the best way for me to encourage a network of friendships with moms close by.

Treating autism has also meant staggering medical bills for us. From the evaluation process, we have been consistently fighting to pay the medical expenses generated by treating autism. Most of these expenses are not covered by insurance. It is maddening.

Another maddening aspect of autism is the mystery surrounding it. The great divide of beliefs within the autism world in terms of its origin is confusing and upsetting. No one knows where it comes from and why the number of kids being diagnosed is on the rise. Some people say it’s the vaccinations. Some people say it’s not. Also, what does a diagnosis really mean for a child like Bobby? What will his life be like? All of the professionals we work with are carefully trained to not speculate. We are optimistic but uncertain about the opportunities that Bobby will have when he is an adult. For that matter, we are uncertain about what his life will be like as he grows more into his boyhood. Will he have friends? Will he be able to converse with us, in a true back and forth manner? Will he be able to work, go to college, live on his own? While it’s true that no one knows what life brings for any one of us, it is maddening as a parent of a child with autism to not know any parameters. Every child with autism seems to be different, so it’s impossible to say how each of these children will function as an adult.

With the clock now ticking past midnight, I should not write any longer. But I am happy to share our story with you and your viewers, especially if hearing about our experience helps another family and another child in the same situation. The one thing I want to be sure you understand is that our story is one of hope. Our little boy has great challenges and is in the fight of his life to secure a “normal” life for himself in this big world. But he is on his way. Despite the struggles and battles, this is not a sad story, Oprah. Bobby is on his way, and he is going to get the best of autism and live the fullest life imaginable. We imagine great things for him.



Preppy Rider said...

Oh Meg, thank you so much for sharing. This is just beautiful and I would be surprised if Oprah herself read this with a dry eye.

I am so proud of you and RH and everything you are doing as a family to create and discover the wonderful little boy you have in Bobby.

I did see that this was on today, I was going to call you - you beat me to it!

Hugs & Kisses to the boys!

sisters with style said...

Thank you for sharing your story. How very brave of you--I know it must have been hard. Your little boy sounds beautiful!

Shelby said...

ohhhhh beautiful. Thank you for sharing with us!

I can't remember if I gave you my new link - (the former eastoforegom).. I had to delete my blog - but I have a new one and it's:

be well and happy Thursday! :)

Kim said...

God Bless every family with a child with autism. I think that it takes an amazing amount of energy & strength to dedicate your life to helping your little one. I so admire people like you. If you do not already know about her, I urge you to check out Ali Edward's blog, Her situation is similar and I'm sure that you will be able to relate to much of what she writes. She is also dedicated to raising money for autism research and awareness.

Big hugs!

kjquilts said...

Meg, thank you for letting us into your life with this wonderful story of hope. I will keep you and your family in my thoughts and prayers. Ill tune in to Oprah this afternoon and try to learn more about autism.

homedaisy said...

thanks for sharing this, meg. your writing is beautiful, as is your story. i am touched and encouraged by your words. i will be watching oprah today. as a teacher and the mother of a child with his own physical challenges, i sympathize with you. way to go for being bobby's #1 advocate. there is nothing more beautiful than a mother's sacrifice.

Deb said...

Thank you for sharing your families story. Blessings to you this Easter.

SBCVandy said...

Wow Thank you for sharing. I had no idea what it is like to have a child with autism. It sounds like you are facing this with grace, hope and love. He sounds like such a special little boy.


Alyssa said...

That was wonderful, well said and from the heart. Thank you so much for sharing your story with us. Austism is such a mystery and people should know how challenging it can be on not just the individual with austism but for the entire family.

I hope that those of us you read and communicate with in blogland give you a laugh from time to time when you need it!

Have a wonderful Easter :-)

Cindy @ My Romantic Home said...

Your son is lucky to have parents that are so dedicated to making his life the best it can be. All that you are doing for him is so admirable.

Your letter was so beautifully written I can't believe they didn't chose you to be on the show.

Libby said...

I think that was one of the beautiful and heartfelt letters I've ever had the privilege to read, Meg. I am so impressed with your insight and strength and, moreover, your ability to express thoughts and emotions in writing. Bobby clearly has a wonderful family in which to grow and learn. Thank you so much for deciding to share. Fondly, Libby

tulipmom said...

I am so glad that Libby directed me to your site today. Bobby is fortunate to have such a loving and supportive family. My 6 year-old son is also autistic so I can truly empathize with you. I feel like I could have written parts of your letter myself although not nearly as eloquently. Thank you for choosing to share your letter and your story with us.

Poppy said...

You have a wonderful way with words and told your story so eloquently.

Bobby is one lucky little boy to have parents as dedicated to him as you and your husband are.

Thank you for sharing.

Blessings to you and yours.

Kellie said...

Kudos for sharing your story and blessings to you with your challenges. I cannot imagine what dealing with a autistic child is like, but everytime I see the statistics it amazes me that it isn't in the forefront of media coverage on a regular basis. Good luck to you, although it seems as if you don't need it -- you're on top of things already!

Jen @ The Cottage Nest said...

Meg- What a beautiful letter and what a wonderful attitude you and your family have. I'm amazed at the number of children diagnosed in the last several years. Thank you for sharing this part of your life with us. Jen

hqm said...

What a blessing you are to one another. Your story was beautifuly written. Thank you for sharing.

jilly said...

You did such a wonderful job of putting Bobby's story to words and did so with such eloquence and dignity, I too am surprised you were not chosen. I DVR'd it and cannot wait to watch. One of the main reasons behind me moving back to MN was the challenges my sister was facing in raising my niece, now 6, who is autistic. She is a wonderful little gal and I just adore her, but it is important for my sister to have a support system and have someone (family) around her too. As twins my niece and nephew could not be more night and day, my nephew being extremely gifted and advanced and my niece dealing with everyday challenges such as learning to tie her shoes. I am glad you shared this with us here in blogland, we are all here for you and support you.

Lisa said...

Yes...Bobby is blessed to have the parents he has and we are all blessed to have Bobby in our lives.

Lots of Love!
Your sister-in-law

Kim - ScrapToMyLu said...

Bobby is so lucky to have you and your husband. Thank you for sharing your story, it can't be easy to try and make sense out of something that has some many questions. I will be watching today too.

Chris said...

I watch Oprah today and was so touched by all the stories. And now reading your story I am even more touched. Your children are lucky to have such great parenets who are, as you say, on the same page. God bless you and I hope you always find the inspiration and help you need.

Lisagh said...

Thank you for opening yourself up to us and sharing your story.

Anonymous said...

i admire you. that letter is precious and so are you. many blessings.

Jennifer said...

What a well-written story of your experiences. Bobby is very lucky to have you for parents.

Good luck with his continued strides!

I found you through a link on Tulip Mom's site.

PreppyInVT said...

What a great story, thanks so much for sharing.

Belle-ah said...

Thank you so much for sharing your story. The blessings in your household are so evident in your words.

Hannah Lane said...

This is an amazing letter and thank you for sharing it with all of us!! Bobby is lucky to have both of you in his life and vice versa.
Happy Easter!

suburban mom said...

Thank you for sharing that. It was beautiful and very touching. Hugs to you.

Denise said...

Meg, thank you for sharing your story. The love for your children shines out so strongly. You talked about the expenses of raising your son, and in case you do not already know about this, I want to tell you.

I have a son with disabilities; he has cerebral palsy caused by a premature birth. He has received therapy 2-3 times a week since he was 4 months old. He is now 10 years old. Physical and occupational therapy is not mandated to be covered by insurance companies in Washington state for children with irreversible conditions, even though it can improve their condition.

But there is something called a Medicaid waiver, or a Katie Beckett waiver. I just looked it up and they do have it in Illinois. They do not look at the parent's income to qualify your son, they look at his income and savings. We were on a waiting list for a few years before my son's turn came up, but that is what has helped him all these years to get therapy; we could never have afforded it otherwise.

I found something here about some support services:

I hope I have not offended you, and you possibly already know about this information. I just now how difficult it is financially to give your child what he needs.

God bless you and your family,

velvet brick said...

Simply beautiful. Meg, thank you for sharing this part of your life with us.

I am a 1st/2nd grade teacher and two of my students have autism. They are amazing children who have taught me and their classmates so much. As a teacher, I have had to learn much on how to work with children with autism and help to make them successful in my class. Thankfully, my school is one where students with all kinds of special needs are integrated into the typical classroom as much as possible. This has been a blessing to has allowed me to grow in a way not afforded the general public.

I am aware of what impact autism has on a family. You are brave, as is your whole family. I admire the time, dedication and fortitude you and your family give each day. Blessings to you, your husband and your beautiful, beautiful sons. How lucky your boys are!

And Meg... please take a copy of your letter to Oprah and save it in a special envelope for Bobby. One day, whether he's a teenager, a young adult, or a grown man...he will be able to read that letter that you wrote and see how much he is loved. It's probably the most beautiful love letter written that I have ever read.

Love you...

Lallee said...

Meg, I've been enjoying your blog--not sure if I have commented before. I did see the Oprah show--first time in a few months--and was moved by the stories. I am touched by your dedication. I hear hope in your words and see it displayed in your beautiful home. Thank you for sharing. I feel blessed to have a glimpse into your life. God bless.


Martha said...

Your boys are lucky to have such wonderful parents.

You are lucky to have them, too. They teach us what's important, don't they?

Hugs to you,

Trudi said...

I really encourage you to visit Ali Edwards blog too. She speaks a lot about her son. I've been a special ed. teacher for 18 years and I have seen some outstanding growth with many of my students. Always try to keep an open mind to thearapy options presented to you is my one piece of advice. Other than that do all you can do, but most importantly love your son for who he is. He sounds so sweet. My greatest fear for parents with multiple resources is that all their energy is spent on remediation. Stop enjoy your family, always look for the positive, and most of all take care of yourself. If you don't have your health you can't be there for your family. Good for you to start a Bunco group. Your story is very moving. All my best.

suburban prep said...

You have expressed what is in your heart so beautifully. I have a first cousin (he is 20) and he has autism. I know it has been a challenge for his parents. But as you stated that you have a wonderful son --sons.
Your child is a gift. Yet your son has loving parents that want only the best for their children.
Wishing you all the best that life has to offer.

MBH said...

I was so touched by your blog today. I have a son with special needs. I can relate to you and what you and your family is going through. It is not easy, but you seem to have such an amazing attitude. I need to learn from you. thanks for sharing.

smilnsigh said...

Dear Meg,
Thank you for sharing this.

Many gentle hugs, my Dear.


robyn said...

Hi there-I have been admiring your site for a couple months-just wanted to say that I know what you mean about the challenges but the positives too with autism-I have autistic 4 year old twins and we got right on the ball with them-as a mother my instincts were correct and I pushed and pushed for an evaluation and not only did one boy get the diagnosis-months later the next boy did too.....they are at very different end of the spectrum etc.....but my husband and I are on the same page and there is no denial in this house ONLY positive attitudes and reality checks......the boys have been in therapy for 2 yrs now and so far so good(great)....glad you saw Oprah!!! FINALLY she brings this subject to view!!! God bless you and there are so many of us out there in this situation......Robyn

KAL said...

Hi, I'm not sure how I found your site, but I wanted to tell you how beautiful your letter was and how touched I am by it. My twins are two and have autism and I can relate to many, many things you wrote about Bobby. He is lucky to have you. Thank you for sharing.

Jennifer said...

Thank you for sharing your story. I can sense your strength and perserverance. I too have a son with Autism and I could relate to so much of what you wrote. God Bless you as you raise your beautiful son

Grace said...

I have enjoyed your blog for a little while now..(not long but I went back:)I am the mom of two their has a 19 month little boy with another little boy due June 1rst..Your family reminded me of hers:)

My other daughter graduated as a special ed teacher but now teaches kindergarten(almost 10 ys now)..
Her dear friend continues as an orthop├ędagogue(I am sorry I do not know the proper word in English..) and thoughout her career..has taught 3 children.. from the same family..with autism.

I was charmed by your cottage(my style) and your boys:) and often sent a link to your page to my daughter..Because of your boys.. your candor..and the fact that you have my taste:)

Today is different.
I too am surprised you were not picked.Your sensitivity and sensibility are so clear,I think you would have inspired and encouraged many.
Your boys are utterly adorable..their mom is also.
I look forward to visiting again and again..And applaud your family's love.
I am sure he will amaze you:)

tommie said...

Meg, that is such a heartfelt letter. Thank you for opening up this part of your life and sharing. I feel priviledged to be a part, even if only thru blogging.