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Was Your Child Just Diagnosed With Autism? Loving Advice From One Mother to Another

Upon getting her son's autism diagnosis, Ms. Meyers set out to "cure" him: neglecting her marriage, her other child, and her own well-being.

Moms get deluged with tips from doctors, therapists, and teachers about helping their child with autism. What they most need to hear, though, is: "Don't forget they you matter, too. Take good care of yourself."

Moms get deluged with tips from doctors, therapists, and teachers about helping their child with autism. What they most need to hear, though, is: "Don't forget they you matter, too. Take good care of yourself."

Take Good Care of You

After my 3-year-old son was diagnosed with autism, he and I attended occupational and speech therapy classes three days a week. His therapists inundated me with activities to continue with him at home, telling me they were essential to ensure optimal progress.They repeatedly told me we had a narrow window to get results because a child’s brain is most malleable during the first five years of life. With only two years left to make a significant difference, I felt an urgent need to “cure” my boy. I did exercises with him to develop his fine and gross motor skills. I hosted a multitude of playdates to enhance his social skills and improve his eye contact. I read all I could about ways to help a youngster on the autism spectrum. All the while, I cared for a newborn and struggled with postpartum depression.

Over time, though, darkness and despair engulfed me. It was hard to imagine that I would ever smile, laugh, or feel unburdened again. I was numb to the people and things that once brought me joy. I was on the verge of a mental breakdown when I started seeing a counselor and taking antidepressants. Today, 11 years later, I tell mothers who just received their child’s autism diagnosis what I needed to hear: “You matter. You’re at the beginning of a long journey, and you must make yourself a priority or you will wind up depressed and depleted like I did. Lots of folks will tell you what to do for your child, but I’m telling you what to do for you!”

Loving Advice for Moms

1. Acknowledge your anger.

2. Know support groups aren't for everyone.

3. Talk to a therapist.

4. Know friends will disappoint you.

5. Enjoy your child.

1. Acknowledge Your Anger

My son's autism diagnosis launched a long, drawn out battle between me and my anger. I was furious at everyone and everything: mad at God for letting it happen, mad at life for being unfair, mad at my friends who took their typically developing kids for granted, mad at my family for offering little support, and mad at myself for being so damn mad. Like many women, I had never made peace with that particular emotion, thinking it was wrong: raw, ugly, unfeminine, and uncontrollable. I thought it was something that women shouldn't feel, especially mothers.

Yet, even as I tried to dodge my rage, it was pummeling me. My therapist said to me at each session, “Depression is anger turned inward.” Finally, I heard her and gave myself permission to be mad without feeling shame and guilt or thinking I was a bad mom. I needed to be furious about losing the son I'd always imagined before I could embrace the one I had.

Dr. Lisa Firestone, a clinical psychologist, says it’s common for women to turn their anger inward, causing themselves tremendous anguish. According to a 2013 study conducted in the United Kingdom, the severity of depression increases when we keep it inside rather than express it. My fury finally subsided when I discussed it with my therapist, my husband, and some trusted friends. It abated even more when I wrote about it in my journal and attended a weekly kickboxing class.

2. Know Support Groups Aren't for Everyone

After my son was diagnosed, I received the same piece of advice: “Join a support group for parents who have youngsters with autism.” Everybody seemed utterly convinced that this was a panacea, giving me a ready-made community of moms who were experiencing the same feelings, challenges, and heartaches as I was. However, because autism is a spectrum disorder that affects some kids mildly, others severely, and others somewhere in between, there was little commonality in the support group I joined. Instead of finding it comforting, it actually made me feel more distressed and isolated.

Sitting there week after week, more weight and worry were being added to my load. Mothers told heart-wrenching stories about their kids rocking back and forth for hours, banging their heads violently against walls, and pulling out their hair. They talked about their marriages collapsing because of the stress, their finances draining because of the expensive therapies, and their futures in jeopardy because their kids would never be able to live independently.

Because my son was high functioning, I couldn’t relate to their situations. In fact, my problems seemed inconsequential in comparison so I felt uncomfortable sharing them. Being part of this support group only increased my feelings of separateness.

3. Talk to a Therapist

I was ill-matched for the support group and being in it made me feel lonelier than ever. Yet, I still needed someone to confide in, share my worries with, and open up about my fears for the future. Like other parents with children on the spectrum, though, I found that many friends and family members were ignorant about autism, offered lousy advice, and had little compassion.

Some viewed autism in a warped way—as a behavior problem that needed to be curtailed. They’d make comments such as: “You need to be stricter with him…You're too permissive...A good spanking would work wonders!” I grew weary of explaining to them what autism is (after all, I was just learning myself) and got fed up with all the discipline tips coming my way. I desperately needed what the Buddhist monk and Zen master, Thich Nhat Hanh, calls "compassionate listening" where the speaker is allowed to "empty their heart” and, therefore, find relief from their suffering.

I had dismissed the idea of seeing a professional, thinking it was too much of a hassle to find a babysitter. Yet, when I finally went to counseling, it was the best decision of my life. My therapist provided the compassionate listening I needed to purge my pain. She helped me conquer my depression so that I could once again function as a loving wife, devoted mother, and a well-balanced and emotionally healthy human being. She helped me realize that I mattered and that the more I filled myself up, the more I had to give to others.

4. Know Friends Will Disappoint You

Looking back on this period, I realize my son’s diagnosis didn’t devastate me nearly as much as the desertion of friends. Some pals abandoned me because they were too self-centered to listen to my problems. Others slowly faded away because they didn’t know what to say or what to do. Others left because we no longer had much in common since I had a youngster struggling with special needs while their kid was thriving. While it was painful to lose these relationships, I now see that it was an inevitable part of my journey and I’ve made peace with it.

During that time, I had one pal who offered to watch my baby so I could focus solely on my older son during his speech and occupational therapy sessions. We’re still the best of friends now, in large part, because she showed me such compassion and kindness then. She saw me struggling and threw me a much needed lifeline. She was rare and wonderful. These are the folks moms who have children with autism need to cherish while letting the others go.

With medical appointment, therapies, and the push to make improvement, some parents forget to just enjoy their kids.

With medical appointment, therapies, and the push to make improvement, some parents forget to just enjoy their kids.

5. Be Silly With Your Child

Mothers struggle to find time for exercising, eating right, getting enough sleep, and recharging their batteries. This battle gets magnified many times over for those of us who have children with autism. Not only do we have youngsters who need extra care, we can easily become obsessed with hastening their progress and trying to "fix" them.

Each week I'd attend speech and occupational therapy sessions where I'd learn ways to help my son with articulation, movement, balance, and strength. The therapists did activities with him and instructed me to repeat them at home to ensure optimal progress was being made. Because I was so desperate for my son to improve, though, I often behaved more like his personal trainer than a parent who loved and accepted him unconditionally.

During a session with my counselor, she pointed out that my son needed a mom and not a trainer. She advised me to cut way back on the activities that I was doing with him at home. She told me to set aside time for myself to relax, read a novel, listen to music, garden, and decompress. Most consequentially, she instructed me to start being silly with both my sons.

She was the only one who had insisted that I take care of myself. She was the only one who insisted that I lighten up and just have fun with my kids. It was precisely the message I needed to hear, and the one that I now share with other moms who have youngsters with autism.

How to be helpful

This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.

Questions & Answers

Question: My son was just diagnosed with autism. What's your best advice as I move forward?

Answer: My best advice is to take good care of yourself and don't turn your life over to “cure” your son's autism. Make sure you have a support team of knowledgeable and caring professionals (occupational therapist, speech therapist, pediatrician) and loyal friends and family members who will listen to your concerns, offer comfort, and watch your child when you need a break (which you definitely will). Know that some people will profoundly disappoint you, but focus on those who come through for you and your family. If you experience what I did, you'll be flabbergasted at who fails you and who stands by you!

Also remember that, even though you may not know much about autism, you know your youngster better than anyone else and you more than anyone else wants what's best for him. Some professionals only see what's wrong with your child (his articulation needs work, his coordination is poor, his eye contact is bad) while you see the big picture: his kind heart, his loving touches, his compassion with his little brother. Don't let their negativity get you down because they're just doing their jobs. You'll eventually develop a tough skin, but don't forget to release your emotions in constructive ways. Don't keep your anger and hurt bottled up inside of you. Writing in a journal, talking to friends, and seeing a counselor are all things I did to help me cope.

Lastly, I'd say that exercise was essential to helping me get through my son's diagnosis and every day since then. I was prone to depression before that time, and the autism made it worse. Taking long walks, going on hikes, running on the treadmill, and going swimming helped me keep my spirits up and not get overwhelmed with negative thoughts. Exercise helped me live in the moment and take one day at a time rather than worrying about whether my son would attend public school, graduate from high school, go to college, or get a job.

I wish you the best as you and your son begin this next phase. Take good care of yourself and reach out for help, knowing there will be times when a person reaches back and other times when they won't. But just keep reaching!

Question: I am a voluntary support person for parents with children who have ASD. What are the best ways to help?

Answer: First, let me say what a kind and admirable thing you're doing. I would have loved to have someone like you on my side when my son was little. On behalf of all parents with children on the autism spectrum, I say a most sincere “thank you.”

For most of us moms and dads, our biggest challenge is finding a willing and qualified person to watch our child while we go grocery shopping, get a haircut, have a medical appointment, or go to the gym. Some caregivers aren't comfortable watching a youngster on the autism spectrum. Others don't have the necessary experience. It would make a parent nervous to leave a child in their care (I would, for example, not have felt right about leaving my son with a teenage babysitter).

Even family members might not feel up to the task of taking care of a kid on the autism spectrum. Because my son was overly sensitive to touch, sound, and light, my mother was scared to watch him. She didn't know anything about autism and got freaked out when he'd stim. I encouraged her to read about autism, but she was unwilling. Without anyone to give me a break, I often felt alone, isolated, and depressed. I never had time alone to re-charge my battery.

My son would have benefited greatly from having another adult involved in his life besides his dad and me. Because he had articulation problems, he was extremely difficult to understand for anyone who didn't spend time with him. He needed a patient soul who was willing to listen carefully and encourage him to repeat until the communication was effectively made. It could be exhausting at times.

If you read up on autism and attend informational classes, you will be such valuable support for parents. People can be so harsh to moms and dads whose kids act differently than the norm. A person who's knowledgeable can offer comfort and support, jumping in to help and not passing judgment. I was hard enough on myself as the mother of a child on the autism spectrum. The last thing I needed was more people blaming me for my kid's unusual behaviour. What I did need was someone there who really cared.

© 2015 McKenna Meyers

Comments

Tessa Schlesinger on September 27, 2015:

My hat off to you. My daughter taught behaviour modification to kids with autism for a couple of years, and it is draining. Patience, loving kindness, tremendous strength are all attributes that come to mind when parenting kids with autism.

McKenna Meyers (author) on September 16, 2015:

What a great attitude you have! Every kid with autism is so different that we don't know what our futures hold. My son is doing so much better than what some experts predicted for him. Perhaps, with lowered expectations, we've been able to enjoy our kids more and be grateful for their accomplishments -- both big and small. Thanks for reading!

Ralph Schwartz from Idaho Falls, Idaho on September 16, 2015:

When my son was diagnosed, he was younger than 2, which gave us a head start on therapy, etc. Needless to say, I was crushed and the vision of all the father/son activities I had planned came to a crashing halt. I spent about a month sulking and was worthless to my company and the rest of my family, wallowing in grief. But through some divine intervention one evening, the light bulb illuminated. I realized that my focus was on ME, what I had planned, what I wanted to teach him, instead of on HIM and what his needs were. It gave me a renewed focus thinking about things from his perspective and I dove into helping him with both feet. Years of work, heartache, tears, and frustration are starting to pay off and he just mainstreamed into school a few years ago with good results....and yes, we went fishing, and camping, and he helps me build things, and we shop together. We are doing those things I dreamed about, just later than I had expected. I refuse to allow him to call himself handicapped or make excuses to why he CAN'T do something - he gets treated like his sister and we expect him to rise to the challenge, not hold him back because of fear of the unknown. Every day I am thankful and amazed.

McKenna Meyers (author) on September 16, 2015:

I'm glad you got some comfort from my hub. It helps me to write about it. I can't imagine going through it without my husband's support. For too long, I focused on those who turned their backs on me and my son and didn't acknowledge the one who had been there for us all along. Thanks for reading. Wishing you the best with your son!

B Brian Hill on September 16, 2015:

Thanks for the great article. My autistic son is 15. It is very comforting to know that there are others out there who am struggling like I am. I am also divorced and my ex-wife is an undiagnosed autistic. I learned a lot from reading your experiences, and felt supported and uplifted at the end.

McKenna Meyers (author) on September 13, 2015:

When my son was little, we lived in California where they have fantastic early intervention services. He had weekly speech and occupational therapies (one-on-one) at age 3 that continued until he started kindergarten. His speech and occupational therapists provided a wealth of information. I learned ways to help him at home with articulation, social communication, and motor skills. For fine motor, he played with play-dough, peeled stickers, strung beads, squeezed water from hand towels, picked up items with tweezers, etc. We played games such as Hi-Ho Cheerio and Don't Break the Ice. When we moved to Oregon, I discovered early intervention services here are sorely lacking. They just talk about "inclusion," which is their code for saying: "We don't have the money so we just put your child in class with everyone else, give no special help, and hope for the best. " My son benefited immensely from the one-on-one direct instruction he received in California. I hope New Mexico has good early intervention services and you take advantage of them. Have fun with your precious little boy! Take care of yourself and enjoy your unique journey! I wish you the best.

Ruth Mata from New Mexico on September 13, 2015:

My son just turned 2 in July, and was diagnosed with Autism recently. I was actually really glad to come across this hub. I'm still very much in the "what do I do now" phase of things. He still isn't talking at all...which is just astounding to me, because my daughter was talking by 15-18 months. So i'm not sure what else I can do to help him improve on his fine motor skills.

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