Discussion groups have opened my world to friends I would have never met otherwise and my life is richer for it.

Today, one of my friends told me that her doctor did not agree with equipment she was requesting for her child.

It wasn’t anything big, but the doctor thought that her opinion was more important than the parents.

Of course, this can lead to frustration because we are with our children all the time and the doctor may see them once every few months.

Instead of asking more questions about the request, this doctor just said no and moved on with the appointment.

There are times where something is completely against what is safe, necessary or needed for a child.

I understand that.

A doctor or a therapist can see that a certain piece of equipment would not work for a child or a new medication everyone is trying wouldn’t be safe.

Those are the times that a discussion about it and finding an alternative would be necessary.

Sometimes a parent might need education or sometimes it’s about listening to why the parent is asking for something.

Maybe there is a bigger problem to solve.

Other times medical professionals get stuck in a rut and only use certain products, companies, medications or service providers.

That’s when we, as parents, as advocates go to work for our children.

And I would hope any professional would take the time to listen and see that the parent has done their homework.

My genuine wish for all healthcare providers is that they would listen and view us as partners in our children’s care.

I hope that we could solve problems together and each would rely on our own expertise.

After all, we know our children and that is our expertise.

He pondered a bit and I could see another question forming: “but you are white….and she is black?”

It’s not unusual for me to get this question as a mom to 5 children, 3 of whom are of a different race.

I went on to explain to him that we can be a family without our skin tones matching.

That there are all different kinds of families and ours looked like this.

And once again I saw more questions bubbling up as I explained about our family.

“Why is she in a wheelchair?”

“Was she born like that?”

“Can she talk?”

I patiently answered all the questions while I saw the little boy’s dad look at me and his face was red from embarrassment.

Between the questions about race and the questions about disability, the dad thought his son had crossed too many lines.

Finally, the questions stopped and the kids went on to play with the waiting room toys.

His dad told me how sorry he was for all the questions.

I only had one reply: “It’s ok, I am glad he asked those questions.  Really, it’s OK.

I would rather have him ask and then play with her, than to walk away and ignore her”.

I have been amazed at how our girl has blossomed. She has gained weight, she has outgrown many clothing sizes and she went from barely sitting up to now walking with assistance.

She has learned to communicate by using sign language and she is hearing with the assistance of a cochlear implant.

Even with all the discoveries, we still have many unanswered questions.

Our medical paperwork has huge blanks due to her medical history and family history being unknown.

Last week, our doctor suggested that we explore the field of genetics for more answers.

We will be going to a genetics clinic later on this month and begin testing in hopes of learning more about Afua.

A part of me is excited to gain more information and a part of me is nervous that we may find something more devastating.

But like our Doctor said, knowledge is power and we can be more proactive about Afua’s care once we know more.

The truth is that no amount of behavior modification will cure SPD. We manage it with therapies and we avoid challenging situations but sometimes things will happen without notice.

Sometimes the place is too overwhelming or sometimes a smell or bright light set of a chain of events that unravel the child.

We use brushing techniques and weighted blankets and swings and squeezes.

We have chewies and fidgets and compression garments.

These things were foreign to me just a few years ago, but now they are as common as reminding the kids to wear their hats and gloves.

SPD is not a measure of one’s parenting techniques.

I have five children and I had been a Mom for over 10 years before we had a child with that diagnosis. Just as we wouldn’t tell people to just “get over” their broken bone or “be firm” to cure their chronic pain, we can’t discipline SPD.

What we see on the outside is not what the child is experiencing on the inside. It is not within their control to regain balance and calm.

SPD is hard for the parent AND hard for the child.

Public meltdowns are embarrassing but sometimes unavoidable. More education is needed to understand this disorder, but what’s needed most of all is compassion.