A Mom’s Look at Autism: What I’d Tell My Younger Self
When I first learned our sweet, beautiful daughter had autism, I felt as if a fierce tsunami had swept me up, taking with it my family’s happiness and peace. Fear rushed through me as I envisioned a future limited to therapies and hardships.
Questions flooded my mind. Would our two-and-a-half year old daughter ever be able to fully communicate? What type of relationship could she and I have as she grew older? Would she have friends as her autism became more noticeable? Why was she denied an even playing field?
My deep love for her was as strong as ever, but my plans for her and our family were now shattered.
When we arrived home after an emotional car ride, I wiped my tears away so they would not cause her distress. After hugging and kissing her, I watched her adorable little body run around in circles laughing. In this moment, at least, she appeared happy.
But I quickly realized this happiness would last only until the next time she became out of sorts. Then, she would start shrieking and crying.
Before her autism was diagnosed, my husband and I had been told these sudden, loud crying spurts were due to temporary teething pain or severely clogged ears. But my worst fears had now been confirmed. The intermittent meltdowns were, in fact, because of something more pervasive. They were a symptom of autism and would probably continue to be a challenge for her and us.
Sobbing, I called family and my closest friends. Everyone knew someone who had a child on the autism spectrum and promised to put me in touch.
Since I have a master’s degree in social work and education, my training and professional work provided me with some background. Still, I did not have any answers regarding my daughter’s prognosis or which of many different promoted autism treatments would be the best fit. I stayed up all night researching on the Internet.
The next day, calls came pouring in. People told me about therapies that helped their cousins, neighbors, sister’s friends, and others. Desperate to help our daughter, I wanted to immediately try every one of the hundreds of therapeutic interventions and regimens presented.
The process of choosing among broad and rigid autism home programs became mind-boggling: Some did not seem to fit our situation. Many were contradictory. Each intervention had both strong advocates and firm critics.
Along with my best intentions, endless effort, and depleting energy given to therapies, came constant guilt and self-doubt. I felt utterly defeated every day autism seemed to be stunting our daughter’s development and robbing our family of calm.
After a long, grueling, trial and error period of following various autism treatment plans, it finally became clear who our most effective partners were. They were the consultants, doctors, and instructors who spent quality time first acquainting themselves with our daughter as an individual child rather than as a generic autism project.
While her therapies and education definitely needed to continue, their pace and execution would no longer be dictated by a singular one-size-fits-all protocol. Instead, they would be determined by what she could handle at a given moment, always taking into account the whole picture, such as her medical condition, sensory system, involuntary reactions, interests, personality, and current communication skills.
We, as parents, also shifted our focus towards welcoming our daughter’s unique communication style rather than constantly attempting to push her to conform to ours. This shift opened the door to bonding with her on a greater level than we had realized was possible.
Today, when I look at my sixteen-year-old daughter who has autism, I do not feel disappointment, and I do not see shattered plans. Rather, I feel inspiration, admiration, pride, and infinite love.
Some days are filled with joy and laughter; still, there are other days when we have temporary setbacks and autism whacks our family particularly hard.
The dark times are painful, isolating, and exhausting. However, when they periodically come crashing in, I now take comfort in knowing they will pass. When the tsunami calms down again, we always find our way and emerge stronger.
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If I were able to talk to a younger me, the person I was 14 years ago when the autism tsunami first hit, this is what I would say to myself:
1. It is going to be okay. There will be difficult, painful, backbreaking days, but you will also continue to experience joy, love, humor, and happiness in your lives.
2. It is possible to grieve the significant loss of the life you thought you would have, and at the same time love and adore what you do have now. Allow these natural processes to occur.
3. You will feel a greater appreciation and love for the many friendships that withstand the challenges and commitments that accompany this lifestyle. You will also meet new people on this trek who will become close, treasured friends.
4. No matter how many friends and family members reach out, there will be periods of loneliness and isolation. These are natural, common feelings that often come with raising a child with significant special needs. But do not allow yourself to get stuck there—stay in touch with those who care and are able to be present.
5. Connect with other autism parents. They will be your rock and you will be theirs.
6. Keep in mind that within the autism spectrum, all of our children and situations are different. There is not one right answer that fits everyone. Be there, with openness, to support each other.
7. Avoid the temptation to buy into every program or treatment promoted, and don’t fret or feel guilty for letting go of those not suitable for your child’s situation.
8. Early intervention is essential. While some consultants may not be the right fit, others will prove invaluable. These are the professionals to seek. They are true heroes!
9. It is important to take breaks whenever possible. We are always on duty as parents and consumed with the challenges autism brings. It’s healthy to step away once in a while and recharge.
10. You will be amazed by, proud of, and grateful for every one of your child’s many new accomplishments, whatever they are. You will experience a sense of elation and satisfaction every time your child masters something she had not mastered yesterday.
You will grow in beautiful ways, becoming a stronger, kinder, and more patient and appreciative version of yourself. There will be difficult periods along the way, but you and your child will be okay! You might even be wonderful.
This article was featured in Issue 94 – Daily Strategies Families Need