9 thoughts on “What it is like to parent a child who can never be left alone

  1. A lot of people dpnt understand what being a mom is a child with a disability means, my daughter is only 2 and has CP and I am starting to feel the same way…lonely…friends or family you had before dont seem to get it or know how to help properly. Meanwhile we are freaking out in our heads 99% of the time. Just know you are not alone and even though it may not seem like it; there are other moms out here going through the same thing. Stay strong your son needs you and loves you so much for all you do!

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  2. my son was exactly like yours minus the seizures. As he grew older the behaviors stop…but only cause I got him into early intervention at a young age. He still throws fits like an 8 year old at 17 yrs of age. I still don’t leave him alone. he still and will always be my responsibility. God bless you

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  3. As a teacher of students with special needs, I understand. Just know that you are not alone, even if you feel lonely. I know many parents doing the same thing. The love you show your son is immeasurable!
    Find other moms to talk to that are doing what you do. It helps to talk with someone who gets it. Look for play groups, support groups.
    I applaud your courage to write about it. I bet you helped someone else feel not so alone!

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  4. Only a parent of an autistic child can truly understand. My son is seven, non-verbal, not much sense of danger or care for destruction of property. Whilst we don’t have to be as vigilant as yourself he certainly can’t be let out of our site for more than a minute or two. Other folk don’t understand that whilst their children will get more independent ours will need us to be there to keep them safe for as long as we’re alive and we will because we love them. Keep strong and keep doing your best. That’s all we can do.

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  5. Miriam, over the last few weeks I have read your entire blog, starting from the very beginning! I have been struck by your incredible way with words, you social activism but most of all by the incredible love you have for y our beautiful children. I think you are a prophet of God – please keep writing to remind us of what the kingdom of heaven looks like. Thank you.

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  6. This must be really hard to deal with when it is your own child. I work with special needs adults. One of my clients has to be watched at all times or she will steal food and binge. She also tries to sneak drinks which is especially difficult since she has a medical condition where she must have restricted fluids and if its not restricted she could have seizures. She has injured herself running to grab food when she thought no one was looking.

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