When You Have a Child with Special Needs

Welcome to Mom Motivation Mondays where weekly contributing writers share their motherhood experiences to encourage you to find the joy in being a mom.

{This week: Post by Melissa Lilly}

I thought I wouldn’t be able to do it. Every time, from the day I took her to see the developmental pediatrician, to getting the diagnosis, to battling the red tape to get an aide, to getting her help to where we stand now, I’ve had to push myself, just as I push myself daily to be a better mother and to face autism with my daughter rather than leaving her to struggle alone.

When you’re the mama of a child with special needs, every day is a surprise. You wake up not knowing what to expect.

Will it be a good day?

Will it be a day of sensory issues and out-of-control behavior?

Nothing is certain, even being able to make a trip to the grocery store. It’s all day by day and sometimes hour by hour. On top of that, there are the big things that send your life into a spiral, not knowing what exactly will come next or where everything will land.

Our journey with autism has been a series of life changes since my daughter was first diagnosed last summer. It seems like every few months, something else big happens. It leaves me struggling to adjust while trying to help her adjust.

Life as the Mom of a Child with Special Needs

I had to come to terms with the diagnosis and what it meant. I didn’t have much time to do that.

I quickly had to figure out how to get approval for her to have an aide. It was a matter of safety and her being able to live a life without us having to be locked in the house, unable to go anywhere, whenever my husband wasn’t home. (Someone has to have eyes on her constantly and be ready to jump, which isn’t possible when you’re out alone with her and a baby.)

So much red tape, appointments, phone calls and confusion had to be worked through to get that approval. Once we finally had it, I had to take it upon myself to find an agency that had an aide available and worked with children. With a list of only eight agencies to begin with, call after call I was turned away, left with only one agency who would take her on.

It took a few weeks for that agency to set everything up and find someone. Next, we had to get used to the aide and having someone in our home. The aide’s schedule changed weekly, so we were in a “make do” situation.

Once that quieted down and we began to fall into a new norm with set hours, my daughter’s in-home therapy ended and I had to get her set up for therapy through the school district. She was approved for therapy through the school so we then adjusted to another new schedule.

Constantly, I fought an internal battle wondering if I what I was doing was best for my daughter, questioning if there was more I could do or if I was even on the right track at all.

There is no handbook, no guide, no “do this and such-and-such will/won’t happen” when you are dealing with autism. Every situation, every child, is different.

About the same time as my daughter began the new therapy through the school, the situation with the aide went bad. The person in our home to help was scaring me and my daughter, leaving me to fear for my child’s safety. My daughter was afraid to go to bed after the horrible things the aide told her.

I had to let the aide go. We started all over again, having random aides when the agency had one available. No aide would mean the loss of coverage to have any aide, so we made do with a few hours here and there and hoped everything would work out. Some weeks, there was no aide at all. Often, I didn’t know until the day before if we’d have someone.

My daughter struggled with the after effects of the aide I’d let go, acting out and causing problems with the substitute aides out of fear that the old one would come back. Eventually, she started to calm down.

A new aide started with us and we have hopes that it’ll work out better with this one. Next, I need to find a private speech therapist for my daughter. I know it won’t be easy given our insurance, the area we live in and that we need one that’ll be a good fit. It is something she needs in order to continue improving.

What comes after that?

I don’t know.

My husband and I face many unknowns having an autistic toddler. My daughter faces many unknowns being child with special needs. Life is never certain for anyone.

What I do know is that after going through all these battles, all these struggles and all this uncertainty, I can face the next challenge. I can be there for my child and do what is needed.

I have done it. It’s been hard. So hard! Yet, we’ve gotten through it, together. And we’ll continue to get through everything that is thrown at us, together.

At the end of the day, it isn’t about me. It’s about the sweet, innocent, magnificent child curled up sleeping in her bed, waiting for a new day to dawn and depending on her mama to be there for her through every step of it.

How do you stay strong in the tough days of parenting whether you have a child diagnosed with special needs or not?

 

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Melissa Lilly, owner and blogger of The Stay-at-Home Life, lives in the country with her husband, two children and three cats. She posts openly about her life as a stay-at-home mom, covering everything from having an autistic toddler, parenting advice, weight loss and self-discovery to recipes, crafts and easy ways to save money. See what she’s up to on Facebook, Twitter, Instagram, and Pinterest.

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Enjoy your time at home!