What I Learned in the First Year of Being a Parent to a Child with Autism
April is Autism Awareness Month…I can’t believe how long the journey feels and it is has only been 1 year with a formal diagnosis. It surprises me at how fresh the pain still feels and how I begin to cry just typing as I review the past two years and think about the nuggets of truth I could pass to other parents on this journey. I float back to a time as I began my career in Early Childhood. I see myself sitting at a training on the topic “Kids Who Have Special Needs.” The facilitator handed out this poem to help us understand what a parent might be feeling. It hit home with me then and little did I know 25 years later it would be part of my story. It has been around for a long time so maybe some of you have already read it but I can’t seem to get it out of my mind, so I trust the Universe wants me to share it today:
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
Here is what I have learned over the past two years:
To ADVOCATE: It became clear within the first week of suspecting Parker had Autism that we would need to be the voice for our little boy. The first hurdle was the school system telling me they wanted to wait to screen Parker as he was about to be 3 and they would need to redo paperwork upon him turning three. Bummer for the school system, but he still had two months before three. NO, NO, NO! After twenty years in the Early Childhood field I knew that the sooner the services begin the sooner Parker would make progress. I pushed back and knew my rights: they needed to start the process as soon as I requested. Oh, and the advocacy around the insurance: I can’t tell you how much time we spend fighting the insurance. We were told our insurance wouldn’t cover day treatment. We were told how many OT and speech session he could have in a
year. Are you kidding me? Ummmm insurance company you don’t know my son you don’t know what he needs. My husband, who is the ultimate Parker advocate wrote letters to the insurance company and spent hours on the phone until he was able to get the insurance company to write an individual contract for Parker to receive the services he needed. And over the past year we have had to fight every 15 days to prove Parker needed to continue services. More letters, more advocating and more unneeded stress put on our family. But we have learned to not stop at no.
Side note: Once your child is diagnosed (a medical one, as the school diagnosis will not be recognized by your insurance) you qualify for state benefits. However, if you are middle class like we are the out of pocket for that insurance is pricey and I just didn’t know how we would cover the cost of adding that insurance as well. So, we chose to continue to fight with our insurance. You might fair out better than we did.
It cost a lot of money: I can’t tell you how surprised I was at that fact. I started reading a lot on the topic of autism in the early days and the numbers I was reading I just didn’t buy it. Oh, but now I KNOW it. We quickly racked up bills for speech, OT, feeding therapy and day treatment. Not to mention items to help him regulate and interventions to use at home. It was $70,000 just for a year of day treatment for Parker. My husband quickly calculated and estimates it to be around $100,000 a year when you add in the speech therapy and occupational therapy.
I want to be invited to the party but I say no a lot. I want to have play dates with other mom’s and I was so fearful of how Parker would behave I just sidestepped it. I want to be asked so please don’t stop asking but understand some days are better than others and Parker and my heart just might not be able to handle it today.
We have more setbacks at times than progress: It is a slow journey in terms of growth. At times I would look at my husband and say “Everything is hard from getting up in the morning, meal times, ending the day” We had a plan for everything. What kind of warning would Parker need, what might he get fixated on and how would he handle a high sensory situation. Who would pick him up from treatment who would take him to speech? My husband and I see Parker making progress, but it is daunting. We call it“In Parker time.” He does hit his goals and it is just slower than a typical kid. But he does hit the goals, and in fact, he amazes me every day. (tears again) When he has a particularly difficult day and he melts down over simple life bumps we look at each other and know he will calm down “In Parker time.” It is small but helps us radically accept things we can’t control.
You can’t force your kid to eat what you want them to eat: Some kiddos with Autism struggle with sensory issues which interferes with eating certain foods. This was the case with Parker. Before we knew we tried every trick in the book. “Don’t feed him” said the Dr. “he will get hungry.” Nope, he just wouldn’t eat. We tired hiding certain foods in foods he would eat. Nope he wouldn’t touch it. I endured the looks and comments of others as Parker’s diet consisted of very little. If we went to visit a friend, it meant we brought the foods Parker would eat. When we finally began services Parker started feeding therapy a lot of guilt and shame over Parker’s limited food choice was dissipated. They explained the steps to get Parker to try certain foods (there are 8 of them) and how much it bothered him in a sensory aspect. That was helpful. A year later we have increased the food list extensively and yet it is still a battle we fight but we are getting there.
I am overwhelmed most days: Honestly most days have at least one moment of just feeling overwhelmed. It could be I didn’t put out the right breakfast food, or the pants I have chosen don’t feel right, or he becomes fixated on something and will not be moved. It could be me worrying about how often his younger brother’s needs seem to be secondary to Parker. I watch in amazement at our youngest son, who at age 3, seems to sense the struggle in Parker and gives him the toy or the blue plate he so desperately needs as if to say “I got ya buddy.”
Photo credit: Lauren Riley
I can feel isolated and alone: Some days it feels as if no one can relate and I don’t know who to talk to. My husband and I are open about what we need and ask for it, which is helpful. We also commit to a night out twice a month and to invite friends over after the boys go to bed monthly. It can feel isolating when you have a child with special needs and we know we need connection from other adults. So, keeping this commitment has proven to be cup filling for us to continue to show up to meet Parker’s needs.
Seeing the joy in simple moments: We have learned how to see joy in the simplest of moments. The first time Parker could tell us what happened in his day. We typically used a picture board to know his daily activities at school. The first time he shared a friend’s name with us we burst into tears. I can see how this has become a gift to us. The slowing down and honoring the small moments of our lives.
In closing, you know how they say ‘through struggle comes strengthen?’ Connection and grace has been a product of this struggle. Once we burned to the ground the dreams of the past we were able to plant new dreams. My heart grows each time I see my older daughters love Parker as they show acceptance to who he is and see past the diagnosis. I watch as they just seem to know where to pick up lose ends like clearing the dinner table or offering to take the boys outside on a particularly hard day. My husband and I have grown closer as we share with each other our fears and dreams and have become more gracious with our expectations of each other. I believe that really the ultimate dream is to have a place where you fully belong. I know in the end Parker will be okay no matter what the future holds because he will always have a safe place where he is loved and accepted. I sit here a bit stunned as I think, “ I can’t wait to see what other discoveries await for me as I continue on this journey of strengthen and struggle.”
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Author: Jamie Mosley
Jamie is board certified Licensed Professional Clinical Counselor and Certified Daring Way™ Facilitaor in Minnesota. She is passionate about living a wholehearted life. Dr. Brené Brown defines wholehearted living as “engaging in our lives from a place of worthiness.” She trusts that the wisdom to lead a healthy, joyful life is within each and every one of us and her role is to facilitate you in unlocking your own true wisdom.