Voices of Autism: ‘I Have to Keep Positive and Hopeful’

Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. Today’s story was written by Kerry Mihalik, mother of Ryan, 4:

It’s utter and sheer exhaustion at the end of each night. I am tired, sore, achy, stressed, miserable, and overwhelmed more often than is healthy. Yet bizarrely enough, some nights I just can’t fall asleep. Randomly, I will break into tears from the stress of it all. Sometimes, I feel inadequate to raise Ryan properly because I missed something–a new symptom or habit. Or then I’ll learn something new about how to help him and I wish I learned it earlier. Often a gloom cloud of desperation comes over you because so much of your life is out of your control. It just never ends; the problems, the issues, the concerns, the worries.

There are many days that I don’t get anything done because I myself am too tired or sick. I’ve got to clean, cook, shop, nap, write, run errands, job search. I’ve given up much of my social life in favor of sleep. I just don’t have time for friends. I care. I love them but I can’t listen to other people’s problems. Mine are too overwhelming. I feel bad if I share with my friends the reality of my life. Sometimes I alarm my friends with my daily stress level and I don’t want to do that. My friends love me and worry about me. Many times I make plans with friends and have to cancel at the last minute due to sheer exhaustion. I feel that many of my friendships will not endure. I can’t be the great friend that I used to be. Any free time I have is spent resting or spending time with my husband, in order to maintain my marriage, which takes effort.

Every week I’m either meeting with a social worker, teacher, or doctor, or setting appointments for one of the kids or my husband or myself. Two appointments a week is all I can manage. And although I was a professional social worker myself for years, I never realized how intrusive social workers can be. It’s their job and they do it well, but often I chafe against their questions. I’m a private, quiet person. I can write all day about my life, but talking face to face to someone asking me intensely personal questions is not easy for me. I get so defensive sometimes. I have to bite my tongue.

Ryan is improving a great deal. We are so, so blessed for this. I am grateful every day. But often at night I lay awake and I wonder what Ryan’s future is going to look like. How much will he progress? What are his limits? Sometimes, I get real deep and wonder if my belief in him is connected to his ability. So because of that, I have to keep positive and hopeful. I can’t afford negative thoughts. If somehow that negativity slips into his sensitive soul, I will never forgive myself.

To read previous stories in this series, click here. For instructions on how to submit your story, click here.

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  1. by Ilene

    On April 11, 2011 at 9:28 am

    Thank you so much for sharing your story. Ryan’s growth that you describe is due to all of YOUR efforts (as well as his) and he’s lucky to have you for a Mom.

    I understand your struggle and worry for your son. I think all parents of children with special needs share your fears here. The best we can do is to do our best as parents, is to have hope and try to do our part to make and keep them safe in this world. I know that doesn’t seem like much, but at the end of the day, we can only control so much.

    I’m so sorry that you are having such a difficult time finding time for yourself. I know the struggle well, and I really hope you are able to find something that will give you some relief. If there are no support systems locally to you, PLEASE do yourself a favor and look online for such things. You are dealing with “vitual” friends there, but they will understand your struggle as many or most of them there are looking for the same things. And you can do that in your own VERY limited time.

    Speaking as another “autism mom”, I KNOW your struggle and that we need to find ways to keep going, even when it feels our hearts will explode with the pressure of it all.

    I really wish you, Ryan, and the rest of your family all the best!

  2. by Joy

    On April 11, 2011 at 11:49 am

    Oh boy can I ever relate.

    Just keep swimming, just keep swimming. :)

    Wishing you and your son the very best.

  3. by Alysia

    On April 11, 2011 at 1:50 pm

    I know those feelings all too well. Being so tired but still can’t sleep, the breaking out into tears for no apparent reason. I know your struggle. I’m glad you shared it here so other moms and dads can feel less alone.
    Keep up the good work and it will all pay off. I wish you and your son the best of luck.

  4. by Kelly

    On April 11, 2011 at 1:53 pm

    Wonderful story Kerri!!! I really enjoyed reading it……

  5. by Spectrummy Mummy

    On April 11, 2011 at 3:12 pm

    I know we all have these moments. The amazing thing is that we feel that we are the only ones at that time. Sharing your story is helping others to realize they aren’t alone, and that is an incredible thing to do. Wishing your family lots of luck.

  6. by Helen

    On April 11, 2011 at 5:06 pm

    Good luck to you and Ryan! But I must ask a question? How has this affected your relationships with your other children? You barely mentioned that?

  7. by donna

    On April 12, 2011 at 7:37 pm

    Good luck and I hope he keeps progressing, I know what your’e going through .I have a six year old diagnosed w/ autism it’s very stressful I often wonder will he get better , will he get married , have kids ? who will take care of him when I’m gone if he’s not able to take care of himself? keep your head up. you and family are all he has.

  8. by Ashley Prosser

    On April 12, 2011 at 8:35 pm

    I can so relate to your story. Just hearing your words of struggle but in a positive way helps me know that my son and I are not the only one’s dealing with this. No one seems to understand the daily stress: my son has constant meltdowns and I’m at the end of my rope. I just can’t make it better for him and it kills me. I’m frustrated hourly not daily and I know he is more than I. My marriage has been one of my proudest accomplishments but recently the stress of Graedyn’s (my son) behaviors have push my husband and I further apart then I could ever imagine. My family and friends try to be supportive but no one knows the truth of my daily life. I’m still dealing with the truth with my child is struggling. Once again, I just want to say THANK YOU for your words!

  9. by Jessica

    On April 13, 2011 at 1:26 pm

    I think there’s this thing as special-needs parents where we’re not allowed to be down or depressed or overwhelmed. I’m glad you’re so open about it because so many of us feel just like you.

  10. by Kerry Mihalik

    On April 13, 2011 at 3:04 pm

    Thanks for all of your support. I gotta admit that things are getting easier. I wrote this about a year ago. My husband and I have also had some serious struggles. We even separated for about 9 months. I was limited to 500 words for this essay, so I didn’t have a chance to discuss how my son’s autism affects my other children. I am also the proud mom of a beautiful 17 year-old daughter! At times, I feel that Ryan’s autism is very unfair to her. However, she’s wonderful with him and is almost like another mom to him! So it’s a mixed bag. Having a baby is taking a risk.

  11. by Adrienne

    On April 13, 2011 at 3:26 pm

    Kerry, you have always been an amazing mom. Challenges or not, nothing will ever change that.

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