Home > In Their Own Words > The Best Lemonade: Sentiments from a Sibling of an Autistic Kid

The Best Lemonade: Sentiments from a Sibling of an Autistic Kid

This “In Their Own Words” post by Katelyn Jolley, whose brother Jon has autism. Katelyn is a homeschool graduate, musician, guitar teacher, and sister to a brother with autism. She is also the founder of the Facebook group Siblings of Autistic Kids.

“Ay-yoo,” Jon said.  His head was buried in my shoulder; I could hear the muffled sound of his helpless hiccuping.  In that moment, I felt my frustration dwindle and disappear as it was replaced by something else: tears.  Silent, warm tears to match my brother’s.  We cried together.

It had been another breakdown.  I hadn’t let him play outside, and he didn’t like that.  During these severe tantrums, I had learned, it was nearly impossible to comfort him; I had waited for the storm to blow over.

As I knelt there comforting my sobbing brother, I found myself reflecting on the past two years of our lives.

The very first time I saw my brother, Jon, he was nineteen months old.  It was a chilly February weekday.  As a family, we had made the decision to adopt him.  I remember giving Jon a hug for the first time; he just stood there, stiff.  “He’ll get used to you,” my parents encouraged.

Not long after Jon’s adoption, we started noticing unusual traits: head banging, toe walking, screaming, and lack of responsiveness, to name a few.  In the beginning, we simply equated these things with personality quirks.  But there was another mystery: Jon didn’t get hurt. He didn’t feel pain; at least, he didn’t show it outwardly.  We thought for awhile that he was simply “tough.”  He was a husky kid, after all.  Maybe he had some early-onset phobia of emotional showcases.  Who knew?

We soon realized, however, that something more was going on.  We took him to an Occupational Therapist, who diagnosed him with Sensory Processing Disorder (SPD).  But even then, armed with a fresh diagnosis, we had a feeling that wasn’t the full story.

Jon’s tantrums continued to worsen.  His second birthday came and went, and his communication skills were next to nada.  His younger brother began to catch up to him in developmental milestones.  With time passing and Jon not progressing, we decided to get a second opinion.  We now know that Jon (three and a half) has Autism Spectrum Disorder (ASD).

As anyone in my shoes will agree, being a sibling of an autistic kid is not always easy.  For siblings of kids with special needs, denial is often present.  But I have learned that love, unconditional love, is amazing at filling in the gaps caused by frustration and confusion. I’ve found truth in the sentiment, “(S)He who laughs, lasts.”  I’ve learned that acceptance is a mindset. Having an autistic sibling can be a beautiful journey.  It is a remarkably life changing, character building experience – if you let it be.  Along my journey as a sibling of an autistic kid, I’ve learned things I never knew, felt things I’ve never felt, and loved in ways I never knew I could.

If life hands you a lemon, don’t just make lemonade; make the best lemonade on earth and give everyone a straw.

As I knelt there holding my priceless, beautiful brother, the memories kept coming and I felt a sense of overwhelming love.  I wanted to help him; I wanted to keep him safe.

“Ay-yoo,” Jon said again, and tears filled my eyes, for I knew something: “Ay-yoo” was his own imperfect, wonderful way of saying, “I love you too.”

“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.

Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

  1. January 20, 2011 at 1:33 pm

    Ms. Jolley, Beautifully written w/ warm sentiments & practical tips! I thank God Ur austic brother has U in his life!!

  2. Audrey Castillo
    January 21, 2011 at 7:00 am

    You are a wonderful sister. Your take on being a sibling of an autistic child is intelligent and heart-felt. I will forever remember that saying about “the best lemonade!”

  3. Cheri Little
    January 21, 2011 at 9:33 am

    Very nice & encouraging. I too have found wonderful things about having two children, one of which has autism. My son has Asperger’s Syndrome and he’s the oldest, now 14. His sister is 11 and she is the most empathetic child I know, because of her respect for her brother and simply knowing how to relate, it has helped her with other relationships with the disabled. Even her teachers have responded to me that Jordan tends to gravitate to those less fortunate. I think she is comfortable in her relationship with those kids and in turn they are such devoted friends.

  4. Tanya
    January 21, 2011 at 10:06 am

    This is a beautiful story. I have worked with children who are on the spectrum and it is a life changing experience! The love I have for all children is equally compounded by those who cannot communicate effectively. Katelyn, you are a true inspiration and keep up what you are doing, you are making a difference in Jon’s life.

  5. January 21, 2011 at 10:15 am

    I have a question: because my son was recently diagnosed.
    He is 16 and my daughter is 11.
    She tells me alot lately that she feels “left out”
    What is the best thing I can do for her in this home that makes her feel like it’s “not all about Hunter?”
    Thanks for your post.
    it was encouraging, enlightening and I love the part where you said you’ve learned to accept and love in a way you never thought possible.
    If only the rest of the world could embrace such love, it would be such a better place!

    • Katelyn
      January 21, 2011 at 6:52 pm

      Hi Tiffany! Thanks for your question.
      It’s not always easy for kids to understand why their autistic sibling gets so much attention. One of the biggest fears of parents I’ve talked to is that that their other children would feel left out – so you’re not alone!
      Your daughter is at an age where late night talks and true listening are essential. True listening can be defined as the act of dropping everything you’re doing and focusing entirely. Although it sounds simple, oftentimes it is the #1 most sought after thing. Your daughter may be feeling “left out” simply because she is at the age where being “in” is important. Take time to make time for her, whatever it takes.
      One thing you could do is set up “Date-Days” with your daughter. Set aside some time during the week to do something alone with her, whether it be going out to lunch or playing a board game. Take this time to listen to her. 11 is the age of crushes and hormones; your daughter may be struggling with secret feelings, fears, and frustrations. Taking time to make time for her will make her feel important. This will improve her relationships both with you and with her autistic brother.

      I hope this helped you! Take care!

  6. Azure Grace Shotts
    January 21, 2011 at 10:54 am

    I am not a sibling of an autistic child but my son does have autism, so I do understand exactly what you are saying. The “ay-yoo” thing, that is exactly how my son says “I love you” and he was diagnosed with Pervasive Developmental Disorder/Not Otherwise Specified when he was 3-1/2 yrs old as well. I truly believe the only thing you can do is just continue to make your brother see your unconditional love as I do with my son. It is very hard sometimes, living day to day with someone with autism. My son also takes seizures, which doesnt make it any easier. So I applaud you for being so understanding to your brother’s very special needs. I just wish everyone treated autistic children the way you are with your brother.

  7. Heather
    January 21, 2011 at 12:27 pm

    Katey – You are one amazing young lady. What a blessing you are to not only Jon, but all your siblings (and your parents too I am sure!). Keep being you <3

  8. Mojo Mcfarlan
    January 21, 2011 at 12:39 pm

    Might I say that was one of the most beautifully up lift and inspiring things i have the pleasure of reading. thank you for sharing such a wonderful story of revolution in your adventure so for with your little Brother. it is heart warming to hear that a young lady such as your self would share such an amazing story.

  9. Johanna
    January 21, 2011 at 1:16 pm

    Wow! This story has touched me deeply. I have tears streaming down my face to the point that I can barely see what I am typing. I am the mom of two beautiful Autistic boys ages 2 and 4 and I can certainly relate to a lot of the things you’ve mentioned. God bless you for loving Jon so very much. Jon has certainly been blessed by being given such a wonderful family.

  10. Katrina Lyle
    January 21, 2011 at 1:47 pm

    after reading this i almost burst into tears your words were very detailed and reminded me of the time before we found out our daughter has autism. I have two older children and 3 step daughters, who are younger and I often wonder how they perceive her disability. all of the children are at this time under 10 and for the most part they are very helpful but i wonder what the latter yrs bring. Your story was an insight to what kind of relationship I look forward to between my own children and my asd daughter

  11. Cheairs Gaves
    January 21, 2011 at 1:48 pm

    Beautiful!! I will save this and share it with my daughter one day. She is five years old and her older brother is seven. He has autism. Thank you for sharing!I am so touched by your words-thank you!!

  12. Meghann
    January 21, 2011 at 1:52 pm

    This is very touching. I have a 5yr old son who is autistic and a 3yr old son who is deaf. I often wonder how my 3yr old see’s him, how he will grow up feeling about him. You have given me hope and touched my heart that he will be accepting and loving and as understanding as you are. God bless you. Until someone actually experiences having an autistic child in their life, they never truly know how challenging it can be…and they never know how wonderfully rewarding thier life could be because of that child either!

  13. Kimberley
    January 21, 2011 at 2:02 pm

    Thank you so much for your beautifully written story. My Daughter Christine is 19 and has Autism, she is also blind and has mild mental retardation.I really wish her twin and 15 year old brother. had the relationship with her that you have with your brother. It is truly beautiful to hear a sibling speak of another sibling with autism the way you do. You and your brother are both very lucky to have the relationship that you do, and you express it very well.I completely agree with Johanna the tears were streaming down my face…

  14. Gerard
    January 21, 2011 at 2:26 pm

    As a parent of 3 sons, the youngest diagnosed with Aspergers and ADHD, I often pray and hope that all of the family, especially myself can aquire more patience and understanding to assist my sons become the best people they can be. My youngest is a very bright, energetic and talkative young man. We as a society must try to adapt to the world in the way that persons on the autistic spectrum see things not as “normal” people see things. Remember, how would you want to be treated? The answer of course would be with love and understanding!

  15. Gail
    January 21, 2011 at 2:37 pm

    Katey – Thank you for writing such a touching article. You are truly a blessing to your brother as he learns to navigate this world. The lessons you’re learning will go far since we already know you are an awesome young lady. Keep playing YOUR OWN MUSIC IT IS SIMPLY BEAUTIFUL!

  16. January 21, 2011 at 11:17 pm

    What a beautiful, kind, and loving person you are, dear Katey! I am sure our Dear Lord is smiling down on you for the love you are showing your little brother! Caitlin

  17. Liz
    January 22, 2011 at 11:24 am

    God know it’s not easy being the sibling of an autistic kid. I have 2 autistic brothers. It ain’t easy. But you know something? I wouldn’t change a thing.

  18. Luu
    January 23, 2011 at 7:28 am

    So eloquently written. This brought tears to my eyes. I can only hope I can foster that unconditional love for my son in his little sister as she gets older.

  19. Lillie Carnegie
    January 23, 2011 at 7:47 am

    I can appreciate this story. I am the mother of an adult with autism.
    We are on a very interesting journey. We have fun days as well as frustrating days. I have seen my son change in wonderful ways it is a real blessing to
    see him grow and discover that life can be meaningful even through the
    eyes of autism.
    My son was not diagnosed with autism until he was a young adult, unfortunately
    he was placed in classes that hindered his growth. However inspite of this
    he has always excelled and demanded more. He is hoping to go to college one day

  20. January 23, 2011 at 9:52 pm

    I am a parent of 2 boys the oldest got diaganosed with PPD and the youngest with Aspergers and ADD. It has been hard because they don’t always get along. I wish my oldest could have the patients with his brother. It is hard to find progams because he is a teenager and is not struggling academically. He doesn’t have a social life.

    • Grace Blake
      January 24, 2011 at 11:08 am

      Hello Debbie,

      I have a child who like your is a teenager diagnosed with HfA (High Functioning Autism).

      He was very much like Miss Jolley’s younger sibling. Through years of Ot/PT, social pragmatic programs, etc he has made great strides.

      Like your son, he is academically bright but socially challenged.

      Family day trips can be helpful. Check if your area has any social programs for kids (teenagers) on the spectrum.

      Fortunately (due to a large family)there is a great deal of activity in our home.

      My own social needs make me feel that my own child might be lonely. This could be me projecting my own personal needs upon my child who seems pretty happy doing his own thing.

      Your son may also be fairly happy with his own private activities.

      I recently discovered that my child enjoys musicals. This might be a new social area for him to pursue.

      Good Luck, hang in there.

  21. cheryl abbas
    January 25, 2011 at 10:33 am

    Jon,is so blessed to have such a loving wonderful understanding sister!! I have a four yr.old son Abraham with (ASD) and a daughter jenna who’s 5yrs.old.. and recently she had a playmate over after school and Abraham was being Abraham…Jenna friend was getting upset that Abraham was interested in the toy she was playing with and she started raising her voice..just befor I went to help, I heard my precious 5 yr’old say to her friend “It’s okay just give him the toy now, and when he’s done with it, we can play with it! he dosen’t understand, because he’s different, jenna’s friend protested NO!and jenna replied..”I want to be a good sister.. he dosen’t understand, he’s ontistic…I smiled with such pride..what a big girl…what a sister!!!

  22. Mike Mattfolk
    January 26, 2011 at 4:50 am

    Katelyn you are a remarkable young lady. Whatever you decide to do with your life, I am certain you will achieve great success. You remind me of my grandson who is so good with his autistic sister. Thanks for making me take a minute and reflect on the special joys that all of my grandkids bring me.

    God bless you in all of your endevours.

  23. Marquette Carmichael
    January 26, 2011 at 9:22 am

    Thank you for sharing your story you are both blessed to be in each others live. I as well know the struggles as well as the blessings of having someone who’s Autistic in the family My seven your old son is Autistic and often has a hard time expressing his needs which then turns in a melt down. Continue doing what your doing you and he share somthing very special and trust me he knows it as well.

  24. Chrisi Timmsen
    January 28, 2011 at 1:35 am

    I have three children two girls 17 and 18, and Jonny 13 who is autistic. The pros call him nonverbal but my beautiful girls understand him just fine! He speaks in Disney movie lines mostly. Some times even Disney can get dicey though. Like the many times he has quoted 101 Dalmatians by yelling :You idiot…you imbecile!” But my most endearing thing to hear is the pitiful “Bageera!” from the Jungle Book which means I’m stuck and scared- come save me! Then I know sisters always come running to be his hero with perfect clarity into his plight. Nonverbal…posh! Good siblings can unlock so much love!

    • Jeff Wainwright
      November 29, 2011 at 7:33 am

      Hey Chrisi wow glad you posted cause I was beginning to think My boy was the only movie line talker!! Tristan started it at about 31/2 4 years old and for awhile was his primary communication, he is nine now and has alot of his own speech but let him get upset and the movie lines flow out, although he has learned to subsititute names and situations within the lines to reflect who hes talking too and what he wants to say. He is very verbal, lol sometimes too much like any nine year old. Have two thirteen year olds in house with him and most times they are good with him but unfortunately one of thems tone of voice just grates on him and drives him crazy making him angry every time she comes near, but I hope he gets out of this with age.

  25. Melissa Cruz-Skaggs
    January 28, 2011 at 9:01 am

    Beautifully written Katelyn!
    You are a true Warrior-Sister! The world could learn a lot from Autistic little ones and their families if they would just open their minds and hearts. Keep up the great work!

  26. Rae
    March 1, 2011 at 10:16 am

    Your story really helped me,, I often wonder how my 8 year old feels , she will tell me “mom I know Im his lil sister but really Im his lil big sister” and that she is. It is amazing the selflessness she has when it comes to her brother,, I hope she doesn’t come to resent him..

  1. February 2, 2011 at 4:28 pm

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 1,052 other followers

%d bloggers like this: