Home > In Their Own Words > In Their Own Words – What I Believe and What I Know

In Their Own Words – What I Believe and What I Know

This “In Their Own Words” essay is written by  Susan Levy is a working mom with a teenage son with autism. Levy currently runs Gilbert Hall School, a small non-profit school for children with neurological disabilities and incorporates a program called Relationship Development Intervention (RDI). She is also on the Board of the Los Angeles Chapter of the Autism Society.

I had a really great time being a mom when Jacob was a small child. When he was really young, I was fortunate that I was able to run a successful business from home. This allowed me enough time to taxi Jacob to his various therapies and doctor’s appointments. This changed starting when he was 7, and the business started to tank. I’d soon have to find employment that allowed me to work full-time and to also be Jacob’s primary caregiver, and it wasn’t easy. But in his early years, I had the luxury of being a full-time Mom and I loved it.

During this time, we had a lot of fun times together – visits to the beach, the various parks in the area, Museum of Natural History, Los Angeles Zoo, Long Beach Aquarium Legoland, Disneyland, Universal Studios, Magic Mountain, and more. One amazing vacation took us to Bern, Switzerland for 3 weeks, and Jacob spoke about it for years afterward. Because money wasn’t an issue, I could do these things and focus solely on Jacob. Though his behavior could be difficult at times, I remember that we shared a lot of positive experiences and happy times together.

Jacob was an incredibly beautiful baby. Not that I would have loved him any less had he not been, but he really was the most gorgeous infant. Big blue eyes, golden blonde hair, the sweetest face ever. Even though he’s now a teenager and taller and stronger than me, he’ll always been my little boy. The early years went by quickly, and I don’t regret one moment of my time watching Jacob grow up. His diagnosis hasn’t changed that. It hasn’t really helped me to love him more, but it certainly has given me a determination to see that he grows up to reach his fullest potential. Over the years, I think I’ve done a good job helping him do that, but I’ll never stop trying until I know he’s happy and living on his own.

So with that said, here are the things that I’ve come to know and believe in my journey with Jacob through the land of autism.  Even though Jacob was considered “high functioning”, I still believe that all of these apply to any child diagnosed with an autistic spectrum disorder.

My son has a disability, the disability does not have him. Saying Jacob is autistic sounds like that’s all there is to him. Saying he has autism puts it in better perspective. Autism doesn’t define him, it only offers a partial explanation why he is the way he is. It helps to make sense of his limited interests, why he insists on telling the same joke over and over again, or why he rejects social settings when it’s with people he doesn’t know very well.

A child with autism can teach you many things: how to remain calm even though your buttons are being pushed beyond what you thought were your ultimate boundaries, how to love someone more than life itself even though at times it’s really really tough, and how to remain composed when your child has a complete meltdown in public. You learn more patience than you thought you could ever possess.

One of the most important things a parent can do is to accept their child as they are instead of trying to change them into something they are not. I never felt sorry that Jacob would never be the child I wanted him to be, but that doesn’t mean that sometimes I wished things were easier and he didn’t have a disability. This can be a difficult thing to do when you have a child on the autistic spectrum, but I can honestly say having to deal with Jacob’s disability has increased my ability to accept others regardless of how different they may be.

We are all people, disability or not. Everyone has distinct likes and dislikes. Everyone has a desire to love and be loved. Everyone has a need to have fun and enjoy the good things in life. Just because someone has autism, doesn’t mean they’ve lost their humanness.  Just because they are non-verbal or they flap their hands or walk on their tip toes just means they are interpreting the world in their own way.  Even if they are also mentally impaired, they have feelings just like you and I.  Everyone deserves respect for the person that they are, not be judged for the person they are not.

Children with autism are not sick or diseased. They are not victims. They have a disability for which they need remediation. They need help learning how to transition successfully in their communities after they leave high school or college. Seeking a cure for Jacob because he’s a victim of autism would imply that there is something terribly wrong with him. In reality, the reason for Jacob’s behavior is the result of his brain not being neuro-typically wired.

Treating co-concurring conditions, like dietary sensitivities, can help mitigate behavioral issues. For example, if your child is non-verbal and has a wheat allergy, he might get a stomach ache when he eats something that contains wheat. Because he can’t tell you in words that his stomach hurts, he’ll communicate his displeasure by being upset. This isn’t due to his autism, it’s because he has a pain in his stomach and the only way he communicate is through his behavior. Take out the wheat and the upset behavior caused by the pain in his stomach will end.

For children on the autistic spectrum, the world is a confusing and overwhelming place in which to live. They don’t know how to act with their friends, they don’t understand what is happening in the classroom, and they have a difficult time with their parents. They may have a sensory issue that makes wearing clothing or shoes very uncomfortable. They may have a problem with communication and they are constantly frustrated when they have problems expressing their thoughts and feelings. If you really think about this, how would you feel if every moment of every day you felt incompetent, misunderstood, or unable to navigate in your environment.  As much as it’s sometimes difficult to be the parent of a child with autism, just think about how hard it is for the child when the world is a constantly confusing and scary place.

The eye on the prize for your child is to help him achieve a quality of life with meaningful employment, close friends and personal relationships and the ability to live independently.  Any and every treatment, therapy and intervention needs to be done with this in mind, always and with no exception. Time and money are limited resources. Be sure to use them wisely.

Parents need to have experiences with their children. Sharing time with Jacob is something I’ve never regretted. Even though his behavior could be at times completely annoying and exhausting, I know that our time together was one of some of the best time I ever spent for both him and me. Shared experiences build positive memories.

Most importantly, don’t give up hope.  There were many days that I wondered about Jacob’s future. Would he ever have friends?  Would he graduate from high school?  Would he attend college?  I still have these thoughts, but I am much more positive that Jacob’s future than ever before.  So for all the parents of a child with autism, no matter what your child’s diagnosis, whether he is high functioning or low functioning, verbal or non verbal, always keep in mind that you are the key to his success.  The future of your child is at stake.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

  1. Deana Krutel
    July 18, 2010 at 12:14 pm

    Thank you for sharing;)

  2. dave piersall
    July 18, 2010 at 4:26 pm

    this is so true.could’nt have said it any better.i have these same thoughts about my son everyday.thanks for sharing your story.

  3. Jennifer Vadnais
    July 18, 2010 at 6:43 pm

    Being a mom of child on the spectrum, I really connected with your words. Thank you for sharing your thoughts.

  4. Tara Wescott
    July 18, 2010 at 9:32 pm

    This is a wonderful testimony. My son Tyler is 15 and was diagnosed when he was 4. Soo many people regardless of their education still have misunderstood views on what autism really is as far as a diagnostic view. Every week i hear at least one of these comments..”What is that? So is he retarded or something then? Is it contagious? Unfortunatly even though we as a nation are doing soo much better on educating on Autism the reality is unless it happens to you or someone you know its just not important. People dont seem to realize that the next child affected could very well be the next child they give birth to. Thank you for expressing to others that having a child with autism doesnt have to be a curse it may be the most precious gift you will ever recieve.

  5. Bruce Smith
    July 18, 2010 at 10:31 pm

    Hi, I am a father of a 5 year old boy with autism and I was also fortunate enough to spend my days at home with Dylan. I agree with everything you say and thank you for coming forward and saying it.

  6. ileana morales
    July 19, 2010 at 1:13 am

    THIS IS MY STORY:Hi! my name is Ileana Morales, and i have a 17 year old boy named David, and autistic teenager. David up untill the age of 10 knew very little words such as mama, papa and “toy” (i know all kids favorite word) anyways at the age of 11 he became high functioning autism, he would not stop talking and we couldn’t be happier, he was no longer shy he could actually look you straight in the eye and tell you what he wanted which he never did before, he started doing great in school and at home, but when he turned 16 (and the hormones kicked in) everything changed dramatically and not for the better. He was desperate for friends and he wanted a girlfriend and when he gets something in his head of what he wants he will not drop the subject. growing more and more frustrated. He started trying harder to make friends at school but little by little he came to realize that he was different that he was treated differently and that the girls just wouldn’t give him the same attention that they would to another teenager, he started getting more aggressive every day, David went from my sweet little boy to an aggressive teenager, things where getting out of hand i didn’t know what to do or say because anything would cause an outburst, i didn’t know who to turn to either, the treatments weren’t helping and i didn’t want to result to treatment with drugs, he even started hurting himself with any object he could find or bite himself really hard or smacking his head repeatedly that it would even cause him a terrible migraine. He would kick and punch doors, throw things all over the house, he would cry to me saying ” Mom please, help me i have no friends, I’ll never have a girlfriend, i’m a disgrace” and that would just rip me apart inside, he was frustrated and so was i. I enrolled him in the best buddies program at school, but after every outing, he would come home more depressed, he would tell me that the regular kids didn’t want to talk to him (which honestly defeats the whole purpose of the program). Well one day, i started talking to the mother of one of David’s classmates, Rosa, and we decided to open a club, it all started when Rosa through a sweet sixteen party for her daughter, and all the kids were so happy all week, planning on what to wear, how to dance which the teachers at school showed them how to do. David didn’t have not one outburst all week which for us was a miracle and they ended up having a blast at the party. The following friday i picked up seven high functioning friends of davids in my van with the other mother, Rosa, and we went to “hang out” at the movies “like the regular kids”(in the words of my son) this was the first time they had ever gone to the movies with friends and they would not stop laughing and talking, just being the teenagers that they so desperatly craved to be. Rosa and myself came out of those theaters bawling our eyes out, we just felt so relieved to be able to do that for them. Now we go out every Friday, i have the kids calling me all week to see where we’re going and what time i’ll be there to pick them up, David and his friends are no longer the aggressive teenagers they once where because they’re to busy planning their friday night outings with their friends and it makes me proud to be a part of that.
    There needs to be more programs like this out there yes there’s physical and speech therapy for them when they’re adolcsents but what about they’re social skills, their happiness, Our autistic teens need help, they get lonely they want attention and they want friends, its our human nature to want to be accepted in society. If they suffer so do we.
    I wanted to share this with every mother going through what i went through. Our little club is working and all of us together can make it grow, where every autistic teen can be a part of it.
    I really praise your organization and all the help that you provide and i really thank you for giving me the opportunity to put my story out there.

  7. July 19, 2010 at 2:02 am

    Beautifully described, Susan. Thanks for sharing.

  8. kris hayhurst
    July 19, 2010 at 7:12 am

    Even though I know and accept–even agree with you; it still doesn’t stop people–even special educators and administrators–from expecting they’ll get used to change or adapt to new routines with greater ease. The school district I am in in Texas has said that for the first three weeks of school this year, my kids will attend their home campus(which they have never been to), then they can apply for a transfer to another campus…in my kids’ cases; a high school that they have been at for two years, and whose staff knows autism. I’ve reminded all staffers that my kids have autism, and that this policy is troublesome for me and for them. So far, I have yet to be heard. I’m keeping the end in mind (goal: kids at the campus they transferred to). Life brings enough changes for kids with autism on a daily basis. The district’s justification is that so they can make sure staff is allocated equally to every campus. I want my kids to have friends, to have their needs met, to know they are in a safe school; free to pursue what curiosity it is that interests them in terms of learning, while also giving them opportunities to learn work-related/employment skills. This is happening, but why, oh why do I continually feel like I’m talking to pet rocks for school district level educators and administrators?

    • odie
      July 20, 2010 at 1:47 am

      i am so sorry kris to hear of school district harrassing ya’ll.can i ask what district?we are in plano,tx.i do occasionally get into difference of opoinions ,usually because i get nervous that she may get hurt.we live near the surb of dallas,so we are blessed in finding everything she needs in order to make her better.this year we had two different entitites tell us that our xspecial child no longer needs special ed,but rather the gifted&talented program.we believe that that if we had returned to san angelo,our hometown,that we would be in the same situation as you.kudos to you by being your childs advocate!

  9. July 19, 2010 at 1:48 pm

    I have a daughter who is four years old and on the spectrum. Your words are well said. Thank you for sharing.

  10. Katie Wright
    July 19, 2010 at 2:38 pm

    What an incredible Mom you are Susan. Jacob sounds like a wonderful guy with a big personality. Good for him!

    I can completely see how autism does not define Jacob but please understand that it does define kids like mine. Autism has destroyed almost every ability one son once had. It has destroyed his health and literally taken his speech away. Despite years of incredible hardly hard work he has made little cognitive progress.

    You described son wonderful trips you shared with Jacob. My son can barely travel. We have never taken a family vacation anywhere but my parents’ house. Because Christian sometimes is up all night and very noisy- yet highly disturbed by other’s people’s noise, staying in a hotel was a nightmare. On that rare instance when we stayed in a hotel prior to a medical procedure out of state. He has been in and out of hospitals more times than I care to remember. Autism also destroyed Christian’s immune system.

    Susan I think you need to speak of your own situation regarding “accepting your child as” and why it wrong to “change” him. My son does want to be cured. Autism is not part of his personality, he is not quirky or different, he is profoundly disabled. Christian still must wear diapers in public papers because autism also took away his ability to control his bowels. Parents like me love our children just as much as any ASD parent despite the fact we do want our kids cured. Naturally I love my son as he is today but feel a tremendous responsibility to do whatever I can to help him regain the skills, ability and the voice he lost at 2 and a half.

    Susan please try to understand how different Jacob’s autism is from Christian’s autism. As I would never dream of telling you how your son got autism, you cannot know the cause of my son’s autism. My child IS sick and he is a victim of reckless medical policies. Autism did indeed cause his GI disease and the loss of his speech. That said, Christian does not live his life as a victim and we find joy and great appreciation in our time together and for all the wonderful things he can do. Christian is a loving, sweet, wonderful little boy I am so grateful to have.

  11. andy
    July 19, 2010 at 7:09 pm

    I think this post is insensitive.Trips to Europe, museum visits all over the world, actual conversations with your child. So few families are that fortunate.

  12. Krystle
    July 20, 2010 at 11:16 am

    I think this is a very beautiful post. Stories like this keep my hope and faith up. Keeps my outlook more positive and my fight to fight harder. Thanks for this post.

  13. Ronda
    July 21, 2010 at 4:34 pm

    Your words were so inspiring, it was very touching, had me in tears. my 15yr old daughter was misdiagnosed for years. finally she was diagnosed with aspergers. it is not an easy job raising a child with with autism and the behavioal problems that come with it. it has not been an easy rode, and there were times tha i just wanted to give up, but never did. i just keep fighting everyday, because i refuse to just give up on her, im the only one she’s got, who’s right there by her side every step of the way. your thoughts and experiences have gave me greater insight on this issue. thank you for giving more insight on this matter and REALLY opening my eyes.

  14. Jackie
    July 23, 2010 at 10:40 pm

    It is like you looked right inside my heart and head. I couldn’t agree with you more. Thanks for sharing.

  15. Jackie
    July 23, 2010 at 10:46 pm

    As someone stated before, a lot of families are not as fortunate. That said, I do NOT think you were being insenitive. Money is an issue for a lot of our families, including mine. I am thankful it wasn’t for someone else. Also, as heartbreaking as it is that some of our children are non-verbal, we should be glad for those that are. We are all in this together! Autism whether mild or severe has it’s own challenges. They are all equally important.

  16. susan levy
    July 25, 2010 at 2:03 am

    Thanks Jackie. I was not attempting to be insensitive; I was only trying to share how great it is to share experiences with your child. I was very fortunate that I was once able to enjoy wonderful family outings and overseas vacations with Jacob. But as I mentioned in my post, those days are long gone. While Jacob was growing up, I received no support from Jacob’s father and or my immediate family, and I struggled for many years to find employment that supported both Jacob and me and also allowed me to still spend quality time as a Mom. I believe that any shared experiences a parent spends with their child is time well spent. Be it a vacation to a far away land or a weekend trip to the park. time parents spend focused on activities with the family benefit the everyone in the family.

  17. Wendy Marshall
    July 25, 2010 at 1:16 pm

    Thank you for sharing. I have 4 children, non- autistic and I have worked in schools with autisitc children. Your words struck a chord with me. Such a wonderful story. I was lucky to have 4 but I think you are really the lucky one. Jacob sounds a wonderful child. I will keep your story and read it often. Mine are grown up now and I have just become a grandma for the first time. When thingd get hard for my daughter, I will remind her how lucky I was and how lucky she is to have Olivia. Having children is a wonderful thing, whether they have a disbility or not. My heart goes out to you, Wendy

  18. doug
    July 29, 2010 at 11:32 am

    I’m very close to Susan and can assure you that she is indeed a single mother working hard each day to provide Jacob with what he needs to survive today and to prosper in the future. Jacob can be a delight and a pain-in-the-ass, but doesn’t that describe any teenager? (as a parent of two boys, one somewhere on the spectrum) I don’t believe for a second that Autism causes concurrent chronic physical conditions, but I know how their existence compounds the struggle of the parent and child; addressing these physical issues certainly can certainly be a tremendous help in addressing a child’s neurological issues (stop basing their diet on white flour, fat, and sugar, and keep both you and your child physically and mentally active, as a start).

  19. August 20, 2010 at 1:39 am

    DEAR SUSAN, i m from india…… my 3 year old son is still in the diagnostic process of autism spectrum……. this made me really worried at time that why did it happened to my son? whats lie in our fitire? would he ever act as a normal child?? yuor story has given some solace to my soul. infact it has changed my perspective for looking at autism not as a problem but as a different way of life… thanks .with best wishes………….sonu

  1. September 23, 2010 at 8:01 am

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