God's Girl

Finding the extraordinary in the ordinary

Magnificent Moms: Mothers of Special Needs Children

on May 11, 2014

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I would like to welcome Sandy Joiner to today’s edition of Magnificent Moms in May.

 

Sandy, tell us a little about yourself, your family, and your profession.

My name is Sandy Joiner.

I have been married to my husband Kendall for 24 years.

We have two children – Susan is almost 21 and Dylan is almost 18.

Both children will be graduating from high school this year.

Susan is in a special needs class which allowed her to attend school until the age of 21.

Dylan is graduating and will be attending college at Campbellsville University majoring in pre-med/biology and has committed to play baseball there.

 

 When did you know your child had special needs?

How did you react?

Did you make any decisions based on your reaction?
We realized when Susan was about 6 months old that she did not have the gross motor skills that typical children do.

She could only sit if you sat her up.

She did not yet crawl.

As the months passed, she still did not sit, crawl, or walk.

At 11 months, she began receiving therapy at a local university through their infant program.

Within 7 months, she had gained her gross motor skills.

However, at the same time, she was losing her verbal skills.

We did not have a definitive diagnosis until Susan was almost 4 years old.

There was no test at the time for Rett Syndrome.

When she was diagnosed, I was torn.

I was glad we finally had a name for what was going on; although at the time it was a horrible diagnosis.

I was also asking, “why me?”

God used John 9:1-5 to help me to see that Susan was here to bring light and hope into the world.

She was perfect in His image and to help others see Him through her.

 

What has been one of the most challenging things about having a special needs child?

It was more challenging emotionally when Susan was younger.

Susan looks like a typical child and between the ages of two and three she went through a regression stage.

She cried a lot.

People would stare and act like I couldn’t control my child.

I learned to deal with the stares.

There is a definite learning curve with anything.

Rett Syndrome is no different.

At this time, the most challenging thing is lifting Susan.  She does not walk independently and needs help in all aspects of her life (eating, dressing, getting in and out of vehicles, etc.)

 

What has been the most rewarding thing?

Seeing her smile.

She has the best smile.

Even if I have a horrible day, I see her smile and it makes me happy.

If she can still smile even though she depends on someone for all of her needs, why am I grumpy and upset?

 

What would you say to a mother who has just found out her child will have special needs?

Think of your child as a child first.  The special need is just a part of your child like hazel eyes or blonde hair.  It should not define the whole child.

Be an advocate for your child – you are their voice.

 

What do you wish you had known?

I wish we could have gotten an earlier diagnosis.

I also wish that at the beginning of the journey I would have realized just how many blessings we would receive through this beautiful little girl.

 

What are some things to keep in mind when mothering siblings of children with special needs?

Make sure the sibling(s) understand that they are special too.

A lot of times children just hear the word “special” – they don’t hear special needs.

This can make them feel that they aren’t special.

Explain to them that God makes us all special – just in different ways.

Allow them to have a childhood too.

We have tried to make sure that Dylan has been involved in different activities.

He has played baseball, football, and soccer.

He has been involved in school activities.

We have always let him know that he and Susan are both loved; however, they each get our attention in the way they need it at the time.

Fair and equal is not always the same for everyone.
What are some things you would like people to know that do not have special needs children?

Do not assume that I have it all together.

I am just like any other parent – some days are better than others.

I am doing the best I can – but sometimes it would be nice to have help.

The older Susan gets, the more difficult it is to find help.

Offer to help even if you are not sure what to do.

It is the little things that mean so much.

 

Who or what has really impacted/inspired you as mother?

My mom always inspired me.

She raised two children while working a full time job.

She was always there for us at school.

When I was expecting Dylan and wasn’t able to lift anything heavier than 5 pounds, she put her life on hold and came to help me with Susan.

She was my rock during that time.

My mom passed away 16 months ago and there is not a day goes by that I don’t wish I could tell her something that one of the kids has done.

She was always so proud of both of them.
Do you have any links, resources, books, etc. you would like to share?

For more information about Rett Syndrome:

Girlpower2cure.org – Susan has a page on this website. You can read about Susan and donate money to help find a cure for Rett Syndrome.

Rettsyndrome.org

Local mental health agencies have great resources for all disabilities

 

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