Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #230~Special Needs Moms, Advice from the Front Lines

Blog #230~Special Needs Moms, Advice from the Front Lines

autism war girl

I feel like I should be doing more.

My child isn’t reaching his IEP goals.

Will my child ever get toilet trained?

I’m not spending enough time with my other kids.

I can’t keep up, I’m exhausted.

Parenting a child with special needs brings on additional challenges and stress. As a mom of a special needs child for 25 years, I’ve had negative feelings of uncertainty, resentment, frustration, sadness, inadequacy and loneliness. Such feelings lead to the worst of all; guilt. We are only human, and it’s understandable to have those emotions as a mom.

mombie

My son, Nick is 25 years old and has a dual diagnosis of Down syndrome and autism.  I  tried my best not to compare his growth and milestones to other children.   Nick had very low muscle tone, which is a trait associated with Down syndrome:

*He didn’t sit independently until well after age one.

*Nick didn’t walk or chew hard textured foods until he was 3 1/2 years old.

*Worst yet, he wasn’t independently toilet trained until age 13.

There were many times where those feelings of inadequacy and uncertainty creeped in over the years.  I questioned myself often, about what more I could do for my son. You try your best, but feel like you are coming up short.  I’ve been there many times, I get it! Take a breath and forgive yourself. There is no such thing as a perfect mom.

Nick, age 2 and his brother Hank age 4…….

AIOtmp (19)

So here is my advice from the frontlines.  First of all, remember that YOU ARE NOT ALONE. When you feel like you are alone, seek out a support system.  There are many  Down syndrome support groups across the country, online and on Facebook that are specific to the diagnosis of your child. Find that group of parents, going down a similar path as you are; they are the ones who “GET IT”.

sign support

When you feel lost, inadequate and overwhelmed, ask for help. Find the experts, and ask other parents, They will give you information and strategies to better equip  yourself to deal with the unique challenges of raising a child with special needs.

help button

Another struggle and dialogue that plays inside our heads as moms is, “But I don’t have time for me.”  Taking some “me time”, when the laundry is piled up, dishes to be washed and a myriad of other chores on the list, leads to feelings of guilt. But, it’s important to pull away, and re-charge your battery. Take time to do something you enjoy. Go have a cup of coffee or take a walk with a girlfriend, exercise, garden, go to Target and walk every aisle; do that thing  that will help restore you.

Pour Cup

Take care of yourself, Mom! When you feel overwhelmed find a support system, ask for help, and remember  it’s okay to disengage and recharge yourself. There is no such thing as being the perfect mother, so take it easy on yourself.  That’s my advice for special needs moms, on the front lines and what’s in my noggin this week.

Happy Mother’s Day 🙂

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

Author:

Teresa is the mother of two boys. Her youngest son, Nick is 25 years old and has special needs including Down syndrome, autism and verbal apraxia. She is a Dual Diagnosis Down Syndrome and Autism Consultant for DSCBA, parent advocate, speaker, and writer who is currently working on the memoir of raising her son, Nick. You can follow Nick's world on our Facebook page and Pinterest @Down Syndrome With A Slice of Autism. Find Nick on Instagram@ #nickdsaustism, Twitter @tjunnerstall.

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