One Family’s Autism Journey: ‘The Good Times Outweigh the Bad’

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Lilly was diagnosed as autistic just before her third birthday.

When my daughter Lilly was born, she had multiple medical issues. She spent her first three months in the Neonatal Intensive Care Unit at UC Davis, where she was diagnosed with a rare genetic condition called Oto Palatal Digital Syndrome.

She underwent corrective jaw surgery at five days old, and suffered from Gastroesophageal Reflux Disease (GERD) so severe that she was discharged with a feeding tube. She had developmental delays: She didn't sit up for 8 months, and didn't walk until she was almost 2 years old.

Her speech was delayed as well, so with the help of the local Early Intervention Program, we started to teach her sign language. She seemed to learn the signs quickly. She would use them for a day or two, but then she would stop, and would not use them again without excessive prompting. Her main attempt at communication consisted of grunts and vague gesturing.

By the time she was 2 and a half, she had retreated to her own little world. She preferred to play by herself, and she would hardly acknowledge other people unless they got right in her face. Her eye contact was very poor. She would rock back and forth on her feet every time she was standing still. She had also taken to licking the back of her wooden puzzle pieces before she would put them back in the right spots.

It was around this time that her Early Intervention specialists suggested we have her tested for autism. A few months before her third birthday, we received the official diagnosis. She also had the double whammy of being diagnosed with intellectual disability, so we knew we had a long road ahead of us.

As of today, we have been living with autism for six years. I'm not going to sugarcoat it; it's hard. Really, really hard. There are near daily major meltdowns where Lilly will bite and scratch herself until she bleeds if we don't restrain her hands.

There is frustration over communication, and battle of wills since she is 9 and starting to form her own opinions and views of the world. She is also obsessive compulsive, which tends to go hand in hand with autism. Any one of these issues can cause a meltdown, and the intensity of the outbursts have increased with age.

She has no sense of safety when in the midst of a meltdown and will do things like pound her fists on glass windows, and take off running no matter where we are. My husband and I have both had to chase her across her school campus and public places multiple times, before she got to the busy parking lot or a street.

She has made strides since she was diagnosed. We had heard positive things about the gluten-free, casein-free diet from the parents of other autistic children, so we found a comparable formula since she was still tube fed. It took about six months before we started to see some progress. She was able to maintain eye contact, and initiated interaction more frequently. It was like a fog had lifted, and she became more alert and aware of her surroundings. It was not a cure, but it was a definite improvement.

We still face many other challenges. Like many other autistic children, Lilly is prone to wandering and bolting. This behavior is referred to as “elopement", but I have always hated that term. I associate it with getting married, which is meant to be a joyful and happy occasion, and there is nothing joyful or happy about this type of activity. We now have chain locks on all the doors due to her past escapes, and after an incident a few years ago on a family vacation where she wandered off my in laws' property, I make sure she is always in our sight when we leave the house. I have read so many stories about autistic children wandering and the outcomes are often tragic, and my heart breaks a little each time because I know how easily that could have been our child.

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Autism can impact the siblings, too. Here the Arnold children ride in the family car.

Lilly has three brothers who are 11, 7, and 5 years old, and I feel like I would be remiss in the description of life with autism if I didn't talk about the effect that it has had on them. I have no idea what having an autistic sibling must be like, so I can only go by what I observe in our family. We are constantly trying to get the boys to understand what autism means, and why Lilly behaves differently than other 9-year-old girls. Of course, when your sister is infamous for throwing fits in the school cafeteria, I can imagine it must not be easy to see “different” as anything but a nuisance.

We do our best to let her brothers know that it's normal to get frustrated and angry at her behaviors, but we will not tolerate bullying. It's not always easy for them to remember, and there are days when I feel like I am talking to a brick wall. Then there are days when I hear that she was melting down at recess and her 7-year-old brother came running over to give her a hug, and I think maybe there is a light at the end of the tunnel after all.

There is a saying that if you've met one person with autism, you've met ONE person with autism. No two cases are alike and each family faces their own unique hurdles. As difficult as it is to parent an autistic child, the good times far outweigh the bad. The times when she reaches milestones that we never thought she would, or celebrating the little things like new spoken words, or a good report from school make the bad episodes worth it.

I'm sure there are many people out there who would view our situation as a burden, but I refuse to see it that way. All of our kids are here for a reason, and they inspire us daily. The truth is that, ultimately, our kids have taught us more about life and love than we could ever hope to teach them.

Autism Awareness Month is April 1 – 30

World Autism Awareness Day 2016 is Saturday, April 2nd.

For more information: The Autism Society http://www.autism-society.org/.

20160315_091429-1Jennifer Arnold grew up near Boston, MA, and has lived in Redding for the past 16 years. She has been married to Earl for almost 13 years. They are the parents of four active children. She has spent the past nine years advocating for and creating awareness for various disabilities, inspired by two of her children who have multiple special needs. In her spare time, she loves to curl up with a good book, experiment in the kitchen, and consume lots of coffee and chocolate. She also loves to travel when the opportunity presents itself and has a dream of traveling the United States in an RV with her family someday.

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8 Responses

  1. david kerr says:

    Many children with autism will end up in group homes when they reach adulthood.  The Reno newspaper has a  series on group homes for the handicapped, mentally ill, or juvenile criminals too dangerous for foster care.  http://www.rgj.com/longform/news/2016/02/25/fragile-system-spotty-oversight-left-mentally-ill-living-squalid-home/80636366/  I recommend the whole series of articles.  The close up photo of the bed bug after a blood meal is a bit lurid.

    Parents of handicapped children spend the rest of their lives worrying about what will become of their children when there is no one left to advocate for them.

    The sale of Journal Media Group to Gannett could go through any day.  It will be interesting to see the changes for the Redding paper.

  2. david kerr says:

    I recommend a google news search of “group homes”.

    Among the worst exploiters of handicapped children are attorneys who sell “special needs trusts”.  Sometimes they will address a parents group.  Others on boards of directors for hospitals or charities.  It is extremely difficult for parents of handicapped children to find good advice.  There is no group out there warning parents about special needs trust and telling them better alternatives.

    The worst thing about being a parent of a handicapped child is knowing there could be nobody for my daughter after her parents die.   The handicapped child’s sibs can grow up to exploit.   Odds are my ex will outlive me by ten years, so I hope she can find an organization with a strong board of directors.  My niece with Downs syndrome is in a group home affiliated with the Catholic church and is happy.  My family members have concluded that home in South Bend will not exploit her.

  3. sue k says:

    Your article is beautifully written – such love shown.

    Blessings to you and your family.

  4. Doni Chamberlain Doni Chamberlain says:

    Jennifer, thank you for sharing your family’s story about life with Lilly. She’s a lucky girl to have you as her  mom.

  5. Jennifer Arnold says:

    Thanks so much…I think we are the lucky ones to have her..she is a true blessing 🙂

  6. Sally says:

    Jennifer – Writing your story of loved Lilly is truly heart warming and shows you are a remarkable human being! Our community is blessed to have both you and Lilly among us!

  7. R.V. Scheide R.V. Scheide says:

    Family is everything. Thank you for sharing your family’s courage, strength and hope.

  8. Brenna says:

    Jen

    You did an amazing job with this article. It brought tears to my eyes. Keep up advocating. Some day hopefully they can find a cure or better understanding of Autism. I will wear blue proudly this month for my little cousin Lilly and others that live daily with Autism. You are very strong and I admire that. Lilly is always going to hold a special place in my heart. Her spunky fashion style and her bigger than her personality keeps me going whenever I see your posts. Love you all.

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