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It’s OK to Have Hard Days as the Parent of an Autistic Child

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I am a happy mother, sometimes sad mother.

I am a strong mother, sometimes vulnerable mother.

I am a sensible mother, sometimes sensitive mother.

I am a protective mother, sometimes advocate mother.

I am a tired mother, sometimes energized mother.

I’m a some days are hard mother, questioning if I am doing everything right mother…

Just a mother giving it her all.

Jacquelyn's son wearing a blue train engineer's cap.

I am just an average woman, nobody special. I am trying to give my son the best of everything.  Trying to give him a beautiful life, always making sure he stays true to his authentic self! I want him to be proud of who he is!

I never want to change who he is — he is simply magnificent.

I am the mother who lays awake in bed while everyone else is asleep. Laying there overcome with an immense amount of anxiety. Isolated. Misunderstood. Overwhelmed. Worried. Defeated.

Being the mom of a child with disabilities is hard. Some will judge me for admitting this. I am sick of sugar-coating things. Some days I am not OK. This is all new to me. During the last 10 months since my son received his diagnosis, I had a lot to learn. I made sure to listen to autistic adults, read their blogs and books.

I must now be an expert in autism, knowing up-to-date terminology so I don’t offend anyone when speaking on behalf of my child. I must now be an occupational therapist, physical therapist, and speech therapist. I must be an ASL teacher, teaching my son sign language. I must be a special education teacher, a nurse, and a specialist. I must know everything about childhood apraxia of speech, motor planning, oral apraxia, sensory challenges, and hypotonia. I must be an expert with IEPs, an expert in advocacy, and know all the laws that protect my child’s disability rights.

Jacquelyn's son sitting in a car seat.

I’m not a bad parent for admitting that it can be hard — just because you may not understand my hard does not mean it isn’t.
If you say you are struggling, you are sometimes ridiculed, but all parents have difficult days, months, and even years. I see mothers with neurotypical kids all over social media talking about how motherhood is hard.

I am learning as I go, trying my absolute hardest. Even days I feel like I got nothing to give, I still give it my all. On those hard days, I hug my baby a little tighter. If I am having a hard day, I can’t imagine how he is feeling. I wish I could view the world through my son’s eyes. Learning to really listen when you have a child you can not speak yet, to hear what your child cannot say.

Some days the mental load of all the specialists, evaluations, phone calls, team meetings, distance from friends and family, people telling you what is “wrong” with your child, how far delayed they are, the doctors, PT, OT, speech therapy, and long wait lists take a toll.

To be clear, it is not my child that is exhausting. My child is my greatest blessing. My world. What is exhausting is having to fight for services, dealing with a broken system, and people wanting to fix my child. He is not broken. Arguing with insurance companies, making sure the school is following my child’s IEP, having to defend your child to others who criticize or think they know better.

What’s exhausting is people thinking my son is just a “little autistic” and therefore things are not as challenging for him. That we can break routines, that he can handle things I say he doesn’t like. I’m so sick and tired of being questioned. I am his mother. He is my son. I know him better than anyone. There is no “easy” autism.

You know what we decide to share with you. This is why boundaries with friends and family are a must. I can’t help but say I am “fine” when someone asks how I am doing, because even if I explain it, they won’t understand. Just like I didn’t understand until I became the parent of an autistic child. It took being on the other side to truly understand. I do get it now.

To those with disabilities, I am so sorry I am really just now seeing you. I am human. I cry, I have feelings and I am sorry I am not Superwoman.

It has been 10 months since Rocco’s diagnosis. Someone told me the first year of the diagnosis is the hardest. Then you will find your groove, and your tribe of others who just get it. There are new bonds and friendships to be made. I know it will get easier and then hard again. This is life. As long as my son is happy, well… that’s all that matters.

Jacquelyn's son smiling.

Originally published: October 1, 2021
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