Home > In Their Own Words > In Their Own Words – The Only Thing I Worry About

In Their Own Words – The Only Thing I Worry About

This “In Their Own Words” essay was submitted by Loary Bartlett of Owensboro, Ky.

My son Zakk was just diagnosed this May with PDD-NOS, high functioning autism, but the story does not stop there. It began in December 2005, when my mom and I recognized that my son was beginning to lose his balance and his eyes were dancing in his head. Immediately, my husband and I took him to the local pediatrician’s office, who referred us to the children’s hospital in Louisville, Kentucky, where they treat this kind of stuff. We had no idea what we were going to endure for the next four years of our lives.

It turned out that Zakk had cancer, neuroblastoma, in his pelvic area and a condition called OMS (opsoclonus myoclonus). OMS is a rare neurological disease which includes symptoms like dancing eyes, jerking muscles, loss of balance, loss of gross motor skills and loss of speech. To this day, my son has not regained speech. We have been told by the doctor that if he does not retrieve it by the time he is seven, he will never talk. May of this year, he was finally diagnosed with high functioning autism.

You’re probably wondering, how in the heck has my family survived? Sometimes I wonder that myself, but with help from family and friends and a open mind about what is happening in our lives, we are able to keep our heads above water, barely. The one thing I keep telling myself is, DO NOT QUIT fighting for Zakk; he is a wonderful boy and when you meet him, you can see that in his smile. As long as Zakk is smiling and laughing, I am happy, and that is the only thing that I worry about.

“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.

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  1. Barbara Pons
    July 8, 2010 at 9:29 am

    So they misdiagnoised him back in Dec 2005? That had to be a very painful experience. Hopefully you can get him some speech and occupational therapy for him. the early the better. get as much intervention as you can. there is DCF voluntary services that help my family out a lot. Also, you will need a school that can teach him because the regular schools usually cant do that. I wish you the best of luck with him. Hang in there it is a long road!

    • theresa abrams
      July 8, 2010 at 10:25 am

      I am very sorry to hear your family especially your little boy has endure so much so soon in his life. I have a 5 year old little man who was diagnosed when he was 2.5 with Autism. The worst day of my life. I cried for 2 days, then I got busy. I read and still read everything on Autism. I was afraid with him being a child of the state, they would take him and put him away. Not knowing anything of Autism. But I talked to his social worker who set me up with First Step, who really helped us. I also decided to help him on my own. I read to him more,I pointed to pictures and had him point back. I would repeat words to him until he started saying them, then would jump for joy or cry when he did. Every new thing he does brings tears to my eyes, from when people told me he wouldn’t do this or that. I finally got to adopt him, he’s biological mother never had the patients, told the courts to let me have him. And the Therapist told them that my baby needed me, I was good for him. But all said and done My little man is good for me. He has made me a better person, I now look at those big brown eyes and that contagious smile and wonder what would I have done without him. Good luck from my family to yours, your family will go on our prayer wall and we’ll keep you in our hearts.

  2. Gail Dresher
    July 8, 2010 at 10:16 am

    My heart breaks for you and your family. Please, please take care of yourself and your other family memebers. You all need your strength, good health and sanity to make it through the challenges you face. I had a brother with severe autism, and it took over my mom’s life to no avail. Talk to the professionals, get in touch with agencies. There are lots of people out there who want to help you. Use all of them, and early interventions are a must and essential, and your state is required by law to provide these interventions. Please find time for yourself. You are important and although everyone needs you, you need to stay sane in this process. God Bless.

  3. Nicole Murphy
    July 8, 2010 at 10:23 am

    I will for sure keep your family in my prayers. Gods love, compassion, and healing know no bounds. He is in control even when things seem to be unbearable. There is hope that never runs out, love that heals all wounds, and faith that can still move mountains. I pray for hope, peace, and rest for your family…and mercy and healing for this precious child. God is for you and not against you.

  4. Noemi
    July 8, 2010 at 10:29 am

    Keep believing in your son and read some of the amazing stories that have been posted on this blog. There is hope. Always focus on your child’s smile.

    I don’t know what it is like where you live, but in Texas there are alot of resources. Our schools are equipped to teach children with special needs and there are speech and other services that can be accessed through the school system, at no cost to you. I know, because I am one of those special education teachers.

    Hang in there and thank you for posting your story. Know that you have a little precious boy that loves you.

  5. Alejandra
    July 8, 2010 at 10:51 am

    don’t ever ever give up! keep fighting God is awesome and He is looking out for our children, He can make miracles, we just need to be strong in our faith. Love your son with all your heart that is the best therapy a child can get. Trust me as a mother of a HFA child i have been there too I know how it feels. Thanks for your story.

  6. p.j.
    July 8, 2010 at 11:13 am

    GOD gives special kids to special people…that is what i have always been told. my son tests my patience, but it is the most rewarding job…we can’t give up!!

    i live in lewisport, with an autistic child…i am curious if there is a support group in owensboro for parents of autistic children?

  7. July 8, 2010 at 12:04 pm

    Never give up! Push the envelope, surprise people. Never take a diagnosis to be the end all do all. Receiving such diagnoses I can imagine to be something that could completely knock you off your feet. Go with that, feel the pain and embrace it. Then look at your lovely son, and embrace him. I have an autistic son and I definitely think that now, a year after his diagnosis, that he is the best thing that happened to me as a parent. I’m thankful that this has taken me to new limits and new levels of understanding…and love. The above comment is true…GOD only gives you what you can handle. I think of this daily, if not hourly.

  8. Monica Pickard
    July 8, 2010 at 12:12 pm

    It really astounds me when a doctor tells parents that “if your child doesn’t ____ by a certain age it will never happen.” No matter what the _____ is, whether it is talking, walking, or anything else you must keep in mind that the doctor is HUMAN. He or she cannot see into the future! They are speaking from statistics, but statistics are not necessarily the way it will go for every child. With the proper therapies your child has a good chance of talking even after he turns 7. Please don’t let any doctor imposed deadline make you lose hope or give up on trying to make it happen. One thing I have learned from experience with doctors is that many of them don’t want to create “false hope” and so they end up taking away all hope. Another thing I have learned is that many times the parents end up knowing a lot more about the disorder than the doctors they take their children to because we take the time to research. There are some great doctors, but you really have to look for them!

  9. Niky Duenas
    July 8, 2010 at 1:44 pm

    God never gives us more than we can handle. Sometimes He trusts us a little too much, but if we believe in Him and in our amazing kids, we can achieve anything. I’m sure your child have changed your life for the better, even through tough times. I know as a mother of a child with Autism I have learned to appreciate the little things I once took for granted with my other two boys. These children are truly amazing and a true blessing in our lives. May God bless you and your family and continue to give you the strength to never give up. just think that Zakk has been to hell and back and he has never stopped fighting.

  10. Judith
    July 8, 2010 at 1:55 pm

    Thank you so much for sharing your experience and your beautiful son with the rest of us.

  11. Brenna Friedmann
    July 8, 2010 at 6:12 pm

    Agree wholeheartedly with Monica – doctors also don’t always realize how desperately we, as parents, believe their word is gospel. after all, “if the doctor says it, it must be true” – used to be the mantra.

  12. katerymom
    July 8, 2010 at 9:13 pm

    thank you for sharing your story. my son just turned 4, and he is the greatest little guy! i can’t imagine him being any other way. don’t ever give up! it is the teeny, little, every day things that add up. god bless

  13. Deepak
    July 8, 2010 at 9:22 pm

    May god bless Zakk. You are a strong person and more importantly a loving parent. I am sure that Zakk sees the fighting spirit in you and it gives him the strength. I don’t know you personally but I understand you and wish you and Zakk the best which is yet to come. You just have to believe in it.

  14. ileana morales
    July 9, 2010 at 1:32 am

    Hi Loary, my name is Ileana Morales, my son David was diagnosed with autism at the age of 7,by the age of 10 ,he would only speak 4 to 5 words ( mama, papa, “toy” (of course) and tom and jerry). Doctor Tuchman from the Dan Marino center, told me that something happens when they turn 11…and it did.now David is now, 17 and he won’t stop talking ( and I’m so happy about that). Now we have different problems, now hw wants a girlfriend and he is having problems socializing,but Im working on it. and his therapist made a comment the other day: “when they become 20 they improve more and more. so just keep going…you’ll see…your kid (thanks to G0d) will amaze you.

    • Sujin Park
      July 12, 2010 at 3:43 am

      Hi, Ileana, I’m a mother of a wonderful 3-yr old boy with autism. I would love to hear your experiences as you raise your son. He hasn’t spoken any meaningful words yet, but I’m not losing hope that someday he will. I’m so happy for your son’s accomplishments. If you’re interested I wanna be friends with you online. Here’s my id: sugins1@yahoo.co.kr. God bless!

  15. Noreen
    October 21, 2010 at 12:04 am

    We have another child who is in our church with the same thing (Princeton, NJ). How are so many children become sick??? A large majority of these kids have double dx’s or sometimes, as my child’s friend has 7 DXs!!! so young??? All we can do is love them, try to keep them happy and try to teach them. Enjoy them while they are here. I will keep him in my prayers and I give you much kuddos for I know…it’s hard to Rest. Rest in God and give it over to HIM. The Boss surely will give you some answers, fortitude and strength when you need it. *Hugs and much love from an ASD Mom* We’re in this together as a community.

  16. December 18, 2011 at 1:34 pm

    Hello Loary,

    I am in the same boat with my son, Waseem. He was diagnosed with neuroblastoma, stage IV, in September of 2006. He was also diagnosed with moderate autism the same week at Riley Hospital in Indianapolis. Because of the treatment for the neuroblastoma, he has moderate hearing loss, but can’t tolerate hearing aids because of the autism. Did you go through this, and if you did, what did you do?

    Thanks,
    Nikki

  1. July 8, 2010 at 8:16 pm

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