Friday, August 23, 2019

David.

I'm not really sure WHAT to title this blog.

A child?

A child I won't meet?

A child who helped me see my path as to my God given plan?

Sounds hokey.

I know.

Let me tell you, its not.

A year ago, tomorrow, as I lay in bed, I scrolled though the day's feed. Facebook can keep my attention even when it seems no attention is needed.

I stopped.

His face.

I clicked.

I read.

David Leary.

There were words, a picture and so much more but as a mom of a disabled child, I sat and looked. Who was he? I had heard of him, yet I had never met him and now, I never would.

I couldn't do justice telling you about David Leary, I don't know, but I DO know what happened fr me in the wake of his passing.

I know I clicked on that "Meal Train" and I made some meal.

I know it probably tasted like cardboard to the parents who shoveled it in trying to sustain themselves so that they could care for their child at home and I know that driving up, I had a feeling that my life wouldn't be the same.

How right I was.

I left my kids at home.

I drove up to this beautiful home, quietly rang the doorbell and waited.

I stood.

In silence.

A freezer meal.

A vase.

This vase, it sat in my room. Mary. Our Catholic Mother. As I read the obituary, I felt called to bring it.

I talked to the therapists.

No parent at home.

There was his brother. We will call him B.

He stood.

He took my hand.

We locked eyes.

I set the dish on the counter, his own aide carefully shuffled it into the freezer and I stood, in awe.

Of the parents.

Of the child.

Of the therapists.

Of what I thought I needed.

Of what I wanted.

I talked.

I giggled and then I watched as their son, B, he stood opening the car doors and honking the horn. I stood. Elated. That I could take his mind off the thing that was probably impacting him most, at that moment.

Fast forward.

Therapists.

My own home.

My daughter.

Love.

She came. She entered. She hand not loved again, until my own child.

We sat.

We played.

I saw her.

She was what I wanted to be.

For my child.

For others.

For what children needed.

A year later.

Memories.

Strength.

Courage.

Perseverance.

Friends.

Support.

Love.

From a meal.

A simple meal.

One that celebrated a life yet supported a family.

Today,

New beginnings. New hope. New future. New dreams.

A child.

He began it all.

Today, we live, not for our own child, but for him, a child whose life touched those he never knew.

Happy Heavenly Birthday to a child who finally showed me the beauty of life.


Saturday, August 3, 2019

TENNESSEE becomes the 50th State to Require Insurance Companies to Cover ABA Therapy #AUTISM

**Photo credit, TN Holler**


I was tagged in a post.

It was about autism.

Not surprised.

It stated "Tennessee becomes the 50th state to require insurance companies to cover ABA Therapy".

Then I read the following from a follower on the page "ABA is an extremely abusive practice denounced by the vast majority of autistic people. This is horrible news for all autistic children in Tennessee. What is needed is coverage for actually supportive services to allow autistic people to reach our full potential, not funding to abuse us into behaving in a way that makes others comfortable."

Of course, I had to respond.

"While I agree ABA done ineffectively is in fact abusive, it can also save lives. ABA is effective therapy, the only identified through studies proven effective. that being said, it must be done properly with the appropriate therapists. While ABA for high functioning children may not be in their best interest, it can help teach self care and protocols to keep children safe. As a mother of a child with ASD, an ABA therapist and advocate I agree it must be the right situation for the individual."

I wanted to take a few minutes to talk about ABA on my blog as I am aware it is controversial. First, what is ABA Therapy? Applied Behavior Analysis is the only scientifically proven therapy effective for autism spectrum disorder. It utilizes a protocol that I refer to as a reward system, its carefully orchestrated to meet the emotional, academic and developmental needs of the individual that the treatment is targeting. While not all children are alike, nor are ABA therapists and ABA isn't always effective for every child on the spectrum. Like any decision, parents, therapists and the entire team that supports the child should carefully identify IF this is the correct therapy for the individual.

While I have seen ABA go wrong, I have also witnessed it go right. For example, our daughter cannot recall what things are or how to ask for something. If you label or tact an item, telling her what it is she may not remember it the first time or 10th time. When you go over it a number of times, pairing it with a reward, repeating and teaching eventually she has the capability to learn what the item is and what it will always be.  For my daughter, when we began ABA there was almost a direct 1:1 response/reward rate. Now, she can go for quite some time without a reward but she knows when she is "working" that she will rewarded for correct responses.

There are a number of individuals, including those who are on the spectrum themselves that do not agree with ABA, and that is okay, it may not be the right therapy for them. That being said, ABA can and will be effective for some population of individuals with autism spectrum disorder. Even with opposition, we as individuals in this great nation, deserve to have options available to us for medical treatment of our children. For a number of years, autism was not covered by my family insurance. While we paid our premiums and also our co-pays, my child did not have access to treatment necessary to help me, as her mother provide her best life for her in the future. This was not just excluding ABA therapy but also, medical visits to a neurologist, speech pathology, occupational therapy, etc. It was my cause for a number of years to spend countless hours creating dialogue with human resources at my husbands company, contacting our insurance provider and continuing to share our personal experience with local congressmen, senators and government officials.

It is proven that the best way to further your child's development with the additional needs of autism, one must access early intervention, appropriate schooling and therapies that will progress them as an individual. While it is not always ABA that a child with autism needs, it is something that must be accessible for those who are in need of it.

Another great example of ABA helping my own child is the fact that she has no impulse control. She is also a runner. This means at any given time she could take off sprinting faster than most Olympic athletes throwing caution to the wind. I have watched as she has snaked her way through crowded boardwalks, I have witnessed her run into the street in front of cars and I have heard of her taking off while at school. At ALL times someone must be vigilant and watch. Its exhausting. Through the use of ABA techniques I have been able to teach her that running from me is scary, dangerous and unacceptable. It has taken years. It has proven effective. Just the other day, I had her with me at the eye doctor. Located inside a busy Walmart not far from the exit, I watched as she began to elope. Standing, I firmly told her no. I told her to sit. I told her after we were finished we would look at toys and IF she stayed we could get one. This is ABA. There was no abuse, no confinement, not any treatment like "dog training". It simply told her my expectation, allowed her to choose and while I stood not knowing if the years of work would make a difference, she looked out the door, back at me and chose to sit in her stroller until I was done. Yes, my nearly 6 year old still rides in a stroller at times. It was ABA that kept her safe, it kept me from having to throw my credit card, purse and belongings to chase her hoping that she would not make it out the door. It was successful.

So, Tennessee, I commend you. For those with strong opinions, I listen. I read. I understand. You are correct, if done inappropriately or for the wrong child ABA is not effective and can in fact be abusive, but when carefully placed in a child's life it can in fact save it, so before you bash it completely, take a minute and listen to my story for ABA has changed my daughters life.





Thursday, August 1, 2019

Special Needs ISN'T always Special Rules...

This post will probably incite some pretty strong feelings, especially from those in the special needs community, but I feel it has to be said. These are my own feelings. I think there is a fine line between identifying your child as special needs and expecting special rules. Recently I have seen a number of posts about children or adults who may need accommodations for their disabilities and while there are laws to protect those individuals, some people seem to be taking a little bit too far.



As parents of kids with extra needs it is our hope that our children be accepted, have access to their best life and are given the same opportunities as their typical counterparts. That being said, it is MY responsibility to teach my daughter to follow rules so that she and others are protected and safe. Anyone and everyone who knows me, knows that I expose my daughter to every experience I can. I work to create a "normal" childhood for her, taking her to as many family outings as I feel she can handle or benefit from but I will always try to teach her what is appropriate and what the rules are. They are in place for a reason however lately it seems many parents who walk a similar path feel differently, especially with a HOT topic. Pool use. I agree, its hot, we want to expose our children to the joys of summer and allow them to be where they may find sheer joy but a pool can also be a deadly experience if rules are not followed. Often in public pools there are specific rules to keep all patrons safe.

Our local pool, which we love is a wonderful little watering hole that allows my kids to have autonomy but still be watched over by myself and the guards on duty. Our pool consists of a toddler pool, splash pad and bigger pool that has a small water slide. The rules are simple. They are posted and stated. Yes, there are times rules can be adjusted to meet the needs of those visiting but especially in a case such as this, rules are important.

My youngest, who lives her days with autism is not able to understand the rules surrounding the slide. They are to wait at the bottom until the slide is clear, to move out from the slide as soon as you surface and swim to get out, protecting both the individual sliding as well as the one who has just slid. I don't let my daughter use the slide. It isn't that they are discriminating against her but she cannot comprehend the rules and could potentially go before it is safe and cause a scene when clearing the bottom of the slide. Its not safe. I don't expect accommodations for this and will revisit the experience next year when we join the pool.

As parents of kids with special needs, its important that we distinguish between making sure our children have opportunities and the best environment for their own personal growth AND learning that rules are often in place for a good reason. Inclusion, understanding, acceptance is necessary and I will continue to advocate for my child as well as other children who need my support but expecting special rules be made for our children in every environment isn't helpful for our children or others in that environment.


David.

I'm not really sure WHAT to title this blog. A child? A child I won't meet? A child who helped me see my path as to my God giv...