Wednesday, January 23, 2013

LET'S TALK THERAPY...

I have learned so much in the last two years about a world I didn't even know existed.  The world of therapy.

Sure, I've heard of Physical and Speech therapy,
but Occupational, Developmental, Behavioral and Play therapy?
What the heck?

When words like sensory processing, vestibular and tactile system, expressive and receptive communication skills are being used and I have NO IDEA what they are talking about, I realized real quick that I need to get serious about educating myself.

So I did.
I am not an expert or a professional in any way.
I'm just a mom who has spent the last couple of years reading, researching and educating myself on how to best care for my son.

Here are some tips that helped me the last couple of years along with some links to some resources in Northwest Arkansas to save you a little time in case you are beginning this new journey.  Because each child's needs are so different, your journey will not look like ours, but hopefully you will be able to find one or two things that will help.

When you start down this road, you start welcoming a lot of people into your family to be part of your child's life.  To be a part of their story.  There will be a lot of opinions from great people who are experts in their fields.  Sometimes they will agree, sometimes they will not.  But, YOU are the expert on your child.  You are the one that God has entrusted to raise that child and you do not get to pass that responsibility on to someone else.

When I started putting Miles' team together, I organized it in my mind like a professional sports team.  I'm weird, I know, but it really helped me not lose focus on my role as Miles' mom.

Here is Miles' team...
  • OwnerGod
  • General ManagerParents
  • Head CoachPediatrician
  • Offensive/Defensive Coordinators - Neurodevelopmental Pediatrician, Child Psychiatrist, Child Psychologist, Eye Doctor, Audiologist, Attachment Counselor
  • Special Teams Coaches - Speech Therapist, Occupational Therapist, Physical Therapist, Developmental Therapist
  • Strength and Conditioning - Preschool teachers in a Day Habilitation Program
  • Sponsors - Early Intervention, Insurance and TEFRA

God blessed Keith and I with two sons, Alex and Miles.
Each have unique personalities and gifts.
Each have a unique purpose and plan for their lives.
My job as the General Manager is to be in constant communication with the Owner.
To seek wisdom and knowledge in how to raise them and what decisions need to be made in order to fulfill God's plan for their lives, not mine.

As the General Manager, you have to be organized!  It is a must!  You will need to keep up with evaluations, yearly reevaluations, test results, goals, information on different programs, support groups, reading recommendations, and funding available.  Since a lot of testing Miles had done overlapped, it was helpful for me to keep all his info in one notebook and I took it to every meeting we had.  It can really hurry things along because you can let them make copies of your paperwork instead of them having to request it from all the other team members.

Here is Miles' therapy notebook...
The General Manager has to oversee all of the opinions and recommendations and continually take them before the Owner.  He will give you direction and perspective if you will be patient and wait on Him.  Don't force any doors open or close any doors, that is the Lord's job.

The Head Coach plays a very important role on your team.
This whole process starts with him/her, so it has to be someone that you trust!

They will refer your child for a therapy evaluation.
They will have to approve the therapies.
They have to sign off on everything!
And if you end up applying for any funding from the Sponsors, the Head Coach will be a part of that process also.

The Head Coach may refer you to some Offensive/Defensive Coordinators.
They have very specific training which is helpful in evaluating and assessing your child's strengths and abilities.  They are very good at helping you understand the issues your child is having and can provide a treatment plan as well as different resources in your area that can provide help and support.  Typically, any official diagnoses your child receives will come from them.

The Head Coach is also a great resource in helping you sift through all the different opinions, which is why I cannot stress enough how important it is to find a doctor that you know, love and trust.

Depending on how the evaluations are scored, you may be told bring in some Special Teams Coaches.  They bring to the team very specific goals they want your child to accomplish based on where he/she is developmentally.  Therapy is a slow process.  It is not a quick fix.  Be as hands on as they will let you.  All of our therapist were more than willing to teach us some things we could do at home to continue to help Miles.

Here are some of our new therapies that we do at home...
Picture cards to help with communication
Place mat to help with mealtime (love this!)
Benik vest for trunk support and to help calm him
Weighted blanket which helps with naps and bedtime
Astronaut board for Kawar Spinning Protocol to help his vestibular system (LOVE this!)
Some other things we have done at home are the Wilbarger Protocal (brushing/joint compressions), sign language, weighted vest, sensory bins, and incorporated a Sensory Diet.

In the fall, we added Strength and Conditioning professionals to our team.  Miles needed some extra help in the area of social skills, and since he wasn't ready for a preschool with typical functioning children, we enrolled him in a day habilitation program where his Strength and Conditioning teachers and his Special Teams Coaches work at the same school and work together on Miles goals.  Miles' teachers are trained special ed teachers and are so gifted in helping each child grow at their own pace.  They are true heroes!  There are a lot of 'therapy school' options out there and they are not for everyone.  You must do your homework.  You must tour and interview each one before making your decision.  You must know what your goals are for your child and how the school you choose will help get you closer to those goals.  This was the tough decision for us.  You are inviting someone into your child's life that will spend a lot of time with them, so please make sure the Owner is the one who directed you to take this step and has given you a peace about it.

So, how do you pay for all of this?
All of the coaches, coordinators and teachers cost money.
They work for you.
And that is were the Sponsors come in.

First, check with your insurance.  A lot of insurance companies cover therapy services.  Sometimes it is very limited, so make sure you understand what your insurance benefits are.

If your child needs more that one type of therapy, the state has several different programs designed to provide funding to help your child get the help they need.

Here are a few programs in Arkansas...
Early Intervention-EI (birth-36 months of age)
Early Intervention is a statewide funding program to assist any child under 3 that qualifies for therapy.  If you are going to try and qualify for EI funds, be sure and contact them before you begin the initial evaluation process because the paperwork must be signed before hand for the evaluation to be covered.  Not all therapy clinics accept EI funds, so be sure and ask before you set up your appointment.

Early Childhood-Coop (3-5 years of age)
The Early Childhood program serves preschool children from age 3 until the child is eligible for kindergarten.  Children must have more than one basic special education need to enter this program.  If your child is currently in the EI program, your coordinator will begin setting up transition conferences about 2 months before their 3rd birthday to help you make the move from EI to the Coop.

TEFRA (under 19 years of age)
TEFRA was developed to allow a child with disabilities living with a family with income that is too high to qualify for Medicaid to gain Medicaid eligibility based on income and resources of the child.  Parents whose annual income exceeds $25,000 will be required to pay a monthly premium to participate in the program.

We have used every one of the above programs.  EI paid for ALL of Miles' therapy services until his 3rd birthday.  8 hours of therapy a week for about 18 months.  That was a tremendous help!  We applied for TEFRA before Miles turned 3 so that when he no longer qualified for EI, TEFRA could kick in.  If you are planning on applying for TEFRA, it takes them FOREVER to process your application (at least 6 months), so keep that in mind when you apply.  Also, keep a copy of EVERYTHING you send TEFRA because they have been known to misplace applications.

Right now, Miles' therapy services and day habilitation are filed with our insurance and then whatever they won't pay, it gets filed through TEFRA.  All of the other things we have purchased (Benik vest, weighted vest, weighted blanket, etc.) we have had to pay out of pocket.  We have had to make a lot of sacrifices and budget for Miles' therapy items, but isn't that what being part of a family is all about?  For now, my clothes budget has been renamed Miles' therapy.  Maybe that's why I'm willing to work my tail off to help him grow, heal and learn.  The closer we get to meeting our goals, the closer I get to getting my clothing allowance back!  Just kidding... sort of.

Here are several links to resources that have been very helpful to us in learning about all the things that make Miles unique and different support we found in Northwest Arkansas...

BOOKS:
The Connected Child by Dr. Karyn Purvis
Gentling by William E. Krill
Beyond Consequences, Logic and Control by Heather Forbes
The Out of Sync Child by Carol Kranowitz
Sensational Kids by Lucy Jane Miller
Raising a Sensory Smart Child by Lindsey Biel
Praying Circles around your Children by Mark Batterson
Harry Potter (Books 1-7) by J.K. Rowling (my escape from real life :)

WEBSITES:
Empowered to Connect (click here to watch free videos by Dr. Purvis)
Jill Kuzma's Emotional Skills Sharing Site
Sensory Processing Disorder
Schmieding Developmental Center (developmental assessments in NWA)
NWA Center for Autism and Developmental Disabilities

COUNSELING:
The Joshua Center
John Brown University's CARE Clinic
Ozark Guidance Center

THERAPY:
Children's Therapy Team (occupational, speech, physical, developmental)
Jarvis Pediatric Therapy (occupational, physical)
Wendy Cassady Speech Pathology (speech)
Northwest Pediatric Therapy (speech)
Thera-Play Pediatrics (occupational, speech, physical)
Arkansas Child Care Services (occupational, physical, speech, developmental)
Ozark Guidance Center / Project Play

SCHOOL+THERAPY:
Benton County Sunshine School
The Elizabeth Richardson Center
Ozark Guidance Center
Early Childhood NWAESC
KIDS FIRST
Kids for the Future

Monday, January 7, 2013

DEAR 2012,

Goodbye.
I am so glad to see you go.
You were a tough year.
There were several months that I literally thought I wouldn't make it.
You were filled with trials, frustrations and transitions.
My goal each day was to just survive.

When you live each day just trying to keep treading water so you won't drown,

it's not real pretty.  But, the decisions you're faced with making in those moments, can prove to be life changing.

The biggest decision we were faced with was our schedule.

My days were controlled by Miles' therapy schedule and it was wearing on me.
Big time.
In the past 23 months, Miles did over 598 hours of therapy and I drove 9,114.2 miles taking him to and from his appointments.

To say that we were tired is an understatement!


Although Miles was making progress, we really needed help with his lack of social skills.  So, Keith and I started looking into all of our options back in April and spent the summer praying about what was next for Miles.  We looked into every school/program from Farmington to Bentonville.  At first, we were looking at preschools with typical functioning children that he could attend part time and continue his therapy services at CTT.  We quickly realized that there were not enough hours in the day to do both.  After talking to and touring one of the special needs preschools, we knew that was where we were suppose to be.  In August, Miles started preschool at the Benton County Sunshine School and we LOVE it.  He is enrolled in their day habilitation program and receives all of his therapy services there as well.  His schedule is the exact same everyday which provides a lot a consistency and predictability.  His teachers, Mrs. Sandy and Mrs. Dianna, are the absolute best.  He has made so much progress in the last 4 months it is pretty amazing!  He is talking in four/five word sentences, taking naps, eating independently and making great eye contact.  Best of all, he is having so much fun!


Another decision Keith and I made in 2012 was to start marriage counseling.

Yes, we are in counseling.
We go once a month and love it so much, we will probably go forever.

People go to counseling for many different reasons.

When people find out that we are in counseling, the responses are quite comical.
The responses range from being confused, to shocked, to feeling sorry for us.

Most of you have heard the statistic that 50% of marriages end in divorce.

But, did you know that about 80% of marriages with a special needs child don't make it?

EIGHTY PERCENT!

When we heard that, we were not surprised.
It's tough stuff.

We made a decision that we didn't want the stress of caring for a child with special needs to take a toll on our marriage.  Instead, we wanted it to make us better.  Stronger.

But, great marriages don't happen by accident.

And we know that.
Marriage is hard work and it is worth fighting for.

We want our boys to know that when you enter into a convent relationship with the Lord, it is permanent.  It is meant to last a lifetime.  It is a forever and ever relationship.  A 'for better or for worse, for richer or for poorer, in sickness and in health, until death do us part' relationship.


People hire personal trainers all the time because they want to get into shape.

Their trainer is knowledgeable of the human body and how it works.
They guide you, teach you, motivate you and hold you accountable.

The role of a counselor is very similar.


Our counselor is a Godly man with a vast knowledge of scripture.

He speaks truth into our lives and breaks down different foundational topics for us (praying together, guarding our hearts, standing in the gap for our spouses' weaknesses, submitting to each other out of reverence to Christ, etc.) that encourage and motivate us to take responsibility for ourselves and make sure our hearts and attitudes are right before the Lord.

It is, by far, the best investment we've ever made in our marriage!


The trials and frustrations of this last year are too numerous to discuss.

The details don't even matter.
It's the lessons.
The lessons that I wouldn't trade for anything.

While I was doing my best to survive, I ended up in a dark and lonely pit.

Satan wanted nothing more than for me to believe that I was all alone.
That God is nowhere to be found.
That I wasn't worth being rescued.

But, he's a liar.


I am worth it.

God has a purpose and a plan for my life.
He was actually waiting to rescue me the whole time.
All I had to do is look up.

The last several months, God, in His infinite grace and mercy, has been reminding me of how much He loves me.  Every lie that satan has spoken has been met with the truth of God's Word.  God is love and He is perfectly fair and just.  God is a purposeful creator who's very voice can speak life into existence.  Everything He makes is on purpose and good.  If we graciously rest in God, God will graciously work for us and work all for good.  God knows those that are His and does not overlook them.  God is NEVER at a loss about ways and means to deliver His people.  God is not detached from His creation, He is emotionally invested.  Even though God said He was sorry He made man (Genesis 6:6), He NEVER said he was sorry for redeeming man!


THANK YOU, JESUS!


So 2012,

I may have been a little hard on you.
I am actually a little sad to see you go.
I am better because of all that you threw at me.
Because of all that God has done, I wouldn't want to be me before you.


"Those who live in the shelter of the Most High
will find rest in the shadow of the Almighty.
This I declare about the Lord:
He alone is my refuge, my place of safety;
He is my God, and I trust Him."
{Psalm 91:1-2}