Texas Parent 2 Parent

This past weekend we attended the annual TXP2P (Texas Parent to Parent)  conference in San Marcos.  This was our 3rd time to attend, and each year we come home overwhelmed with the amount of information.

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Texas Parent to Parent is a state-wide organization that assists families that have children with special health care needs.  The services that can be found at TXP2P include advocacy, support, encouragement, wealth of information, and up-to-date information on legislative matters.

Seriously, we always come home overwhelmed with information.

But…it is more than worth it.  The conference consists of many different break-out sessions that touch on different topics.

This year we attended sessions regarding:

  • medical notebooks
  • IEP/ARD facilitation
  • music therapy
  • and general support for parents

We were able to meet vendors that provided many different services.  One of our favorites this year was a sensory shop of sorts.  Both Matthew & Fischer came home with needed sensory items.

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But the best part-the very best part- is the connections we make with other families.  For that weekend, every year, we are just like everyone else.  We fit it.  We belong.  And as parents to three children with different needs, there are not many places that we feel as though we belong.

That weekend allows us to talk about things we don’t normally have the opportunity to talk about with people that truly “get it.”  And, for a small window of time each year we feel understood.

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~~~~Not that we feel left out in our community.  We are beyond blessed in our community, but it is much different when you are surrounded by a community of special needs~~

If you are a parent to a child with special needs, I highly recommend checking out TXP2P.

You can find more information at http://www.txp2p.org.

You will not be disappointed!

Celebrating Dad

Yesterday, we celebrated Brandon.  All. Day. Long.

We showered him with love.  We had his favorite food for dinner.  He received cards and gifts.

But, I don’t know that he always understands how important he is to us.

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Raising children that were not created in my belly has never been difficult for me.  It was a natural transition.  They were mine.  That is all that mattered.  However, I wondered if the same theme ran through Brandon’s heart.

Were they his?  Would he bond?

And, as usual, he exceeded my expectations.  He welcomed our babes with open arms.  He loved them, and still loves them, with every ounce of his being.

And he shows this love each and every day.

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Brandon is a man’s man.  He prefers to do work that gets him dirty.  He maybe owns one shirt that does not have a stain on it, and his hands are calloused from years of work.  He works all day to turn around and work in the evening when needed.  He prays consistently and isn’t afraid to share his faith.  He is my better half- truly better.

And I don’t want him to need to wait 364 more days for us to acknowledge that again.

So with the help of Matthew, Autumn, & Fischer, we created this list of our favorite things about the man in our lives!

Me:

1. I love that you put God first in your life.

2. I love that you care more about people than you do about “things.”  You are the guy that would literally give the shirt off of his back.

3. I love that you show me how to have more fun and not worry about the little things.

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Matthew:

1. I love when you hold me and tickle my back.

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2. I love when crawl into my bed when I don’t feel good, and you fall asleep next to me.

3. I love when you have cars that are loud and I can hear them.

Autumn:

1. I love when you read my books to me.

2. I love when you get rid of the monsters in my room with your super dad powers.

3. I love when you play games with me.

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Fischer:

1. I love when you make silly faces.

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2. I love when you make me laugh really hard.

3. I love when you fall asleep pretending to give me a bottle 😉

We sure do love you Brandon.  You are our Superman!  Here’s to celebrating you every day of the year!

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The Perpetual State of Losing

When your child is diagnosed with a special need, you will almost immediately be informed about grief.  You will be handed brochures regarding how to handle the news.  You will be instructed on how to find a “new normal.”  You will be armed with information on how to process this new life and navigate this new journey.

We, as parents of children with special needs, grieve for the smallest of things.

We grieve for the loss of communication~Oh how we wish we could hear our child say “momma.”

We grieve for the loss of rights~Oh how we wish our children were included.

We grieve for family and friends that simply could not handle this world.

And we grieve for our child.

Some of us lose our children over and over again.  The extent of needs can be a roller coaster of a ride.

Some of us lose our children suddenly and without warning.

Others have a small fraction of time to prepare, but really no preparation is ever enough.

Still, other parents never have to know the agony of losing a child.

Grief is personal.  Its individualized.  No one knows what you have gone through.  And no one will ever experience it the same way.  It is your journey and yours alone.

Loss is not easy to talk about.  It is as if loss is a secret that no one wants to share.

Yet it is real. 

As a parent to children with special needs, I have seen loss.  I have experienced grief.  Yet my children are still with me, while other parents’ arms are aching to hold their child just one last time.

I will not begin to believe that I know their pain, that I have walked in their shoes.

But, I know I will. 

Its like watching your life happen in front of you~seeing the moments you don’t think will happen~feeling the burden of something hitting too close to home.

The perpetual state of grief leaves you paralyzed.  It wakes you up at night.  It calls out to you in the middle of a perfect day, and it takes your breath away, leaving you abandoned.

This club, this lonely club that no one ever wants to join exists.  It is in your coffee shop.  It is in your schools.  It sits next to you at church.

The parents that have lost

The parents that are losing

The parents that know that one day they, too, will lose

We silently band together and build a bridge that no one should ever need to walk upon.  Yet, here we are.  We are standing beside you.  We are praying for you.  We are grieving with you.

If you are a parent to a child with special needs, this may resonate with you.  You may find yourself somewhere in these words.

If you love someone that has a child with special needs, you may be wondering what to do next.

The answer is simple: Be there.

Be present.  Words are not necessary.  Love and support speak volumes when words fail.

Many times, our children are our life.  When a child has a disability, they become our world.  And when they are gone, the world is gone.

And parents are empty. 

And the world keeps spinning, but everything is different.  And we-the ones that do not know the agony of losing a child-we feel helpless.

But we see you.   We are praying for you.  And many of us know that, one day, we will be you.  But until then, we are silently loving you.

Keeping It All Together

One of the questions I get asked quite often is:

With three kiddos, how do you keep it all together?

The answer: I am VERY organized.  Probably too organized.

But, I thought I would share our own way of organizing medical and school information with all of you guys in the hopes that it may help other parents.

So here is our Kids Medical Notebooks & IEP/ARD Notebook

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Each child has their own medical notebook.  However, currently they share the IEP/ARD notebook.  This notebook is quite simple.  It contains all of the paperwork from each school meetings.  I keep some (not all) of the progress reports regarding different therapies, but I keep ALL of the ARD paperwork.  This helps me to look back and reevaluate goals and objectives for each child.  It also helps me to prepare for each year’s meeting by being able to determine if we are accomplishing a goal or if a goal needs to be edited.

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While we currently have just 1 IEP notebook, each child has their own medical notebook.  Primarily, at new appointments, ER visits, or admissions, I carry the notebook with me.  This alleviates the need to remember each dose of each medication [however, somehow I can still recite them all on demand].

Each notebook begins with the important stuff:

The kid!

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I include name, birthdate, family information, address, and favorite things.  I want all professionals to view the child as, first, a child.

Then, I include specific pertinent information about that child.  Fischer’s adoption records are kept in his notebook until all of his records are updated.  Matthew has a seizure protocol for ER visits.

Following this, I include respiratory and nutrition information.  A printed sheet is filled in as needed with information regarding each child’s needs.  For example, Fischer’s current nutrition needs are available as are Matthew’s parameters for oxygen.  This helps for all of us, including Mom, Dad, and nurse, to know what is needed and when.

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Then, we have medical information.  A page is created for each child’s care team.  It includes all doctors as well as their office address, phone number, and fax number.  From pediatrician to dentist, the information is available in an instant.

In addition, there is a diagnosis list for each child.  It is much easier to hand doctors a print out of the diagnoses instead of trying to spell each difficult word!  Immediately behind the diagnosis list is medical information is copies of test results containing diagnostic information.  For example, a copy of the MRI report diagnoses brain abnormalities is available in case it is ever needed.

Located just behind this, a Hospital Tracking Form is included.  This lists all hospitalizations and the reasons.

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Then, we have medication information and schedule.  Dosage, prescribing doctor, and daily regimen is all included in the Medications Tab.  Right behind that is  pharmacy information page.

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The next tab is all about labs and tests.  This section includes most recent lab results, test results from everything from an upper GI to and eye exam.

The next tab included therapy information.  I list each therapist, contact information, and each child’s schedule of therapies.

Supplies and Equipment are next to last in the medical notebooks.  Each DME company has a page with all contact information.  Monthly shipment information is included as well.  In addition, each invoice is kept until we outgrow that piece of equipment.

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Finally, each child’s birth information is included in the back of the notebook.  Because we missed the first 6 months of their lives, I keep this information in order to answer any questions that my arise.

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The notebooks have been a labor of love for the past five years.  We change and add as needed to keep up with the information we have.  But it takes some stress off knowing that all the information is readily available. I also keep all forms on a zip drive in case we ever need them.

I use a mix of self-made Excel sheets and printables from various sits.  Some of the sites I use are:

I hope this helps some of you get more organized and feel less overwhelmed.

Happy Organizing.

Autumnisms

Autumn is easily one of my favorite people!

She is so funny.  She is quick and witty.  She speaks her mind, and she isn’t afraid t make fun of herself.

Here are just a sample of my favorite Autumnisms:

1. We were approached in the grocery store by an elderly man.  He politely began talking to Autumn.  He then asked her about her legs.  Her response:

A zombie ate them off.  He was hungry.

2. One evening while we are getting ready for bed, Autumn starts talking about Santa:

I think Santa just sits down, eats popcorn, and watches me.  I’m pretty sure that is his favorite movie.

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3. We are getting Autumn ready for bed shortly after she received her new feet.  I tell Autumn it is time to take off her feet and go to bed:

But you don’t have to take your feet off when you go to bed!

4. When asked by Ba what she wanted to be when she grows up:

An adult

5. She was playing with her toys and a toy cup got stuck on her leg.  We tried and tried and really couldn’t get it off.  Her response:

It’s okay.  I’ll just tell everyone I am a peg-leg pirate.  ARRGGGHHH!

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It is easy to be entertained by this funny girl every single day.  I am sure there are more Autumisms to come!

Make A Wish

In 2013, we decided to apply for a Make-A-Wish trip for Matthew.  We filled out the information.  We obtained doctor referrals.  We waited.  We were denied!

Denied!

I honestly could not believe it, but I knew that there was a master plan.

Then, Matthew got sick.  Very sick!  We went to the ER one afternoon because of vomiting.  We would be admitted later that evening due to breathing issues.  Within 24 hours, Matthew would go from needing a little oxygen to being on a vent in the PICU.

And there is where we stayed for the next 3 weeks.

During this hospital stay, we were introduced to Palliative Care.  We met with them often, and they were a constant support and source of encouragement.  The doctor asked if we had considered a wish granting service.  I explained that we had been denied.

He couldn’t believe it either.

So, they reapplied for us while we were inpatient.  And before we were even discharged, we were being informed that Matthew would be getting a wish!!!

Then, the hard part came.  What would Matthew wish for?

He is unable to verbally communicate his likes and dislikes.  But we know his preferences.  We wanted a memory.  A moment.  A tiny minute in time where doctors and therapists and appointments did not matter.

So, of course, we wished for Disney World.

And in August of 2013, we began a week full of adventure.

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Because of the needs of our children, we felt uncomfortable flying from Texas to Florida.  We opted to drive.  We left out late one night in order for the kids to sleep.  And we stopped in Alabama in the next day.

Soon, we arrived in Florida, and we headed to our home for the next week.

Give Kids the World Village.

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It. Was. Amazing.

We were surrounded by other wish families.  There was an unspoken camaraderie between us all.  We could have stayed at the village for the entire week and never been bored.

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Each day we were greeted with goodies in our house.  And each night different events took place.  Characters from the nearby parks stopped by to hang out, and ice cream was served all day long.

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One night of the week is Christmas.  Santa is there, and all the kids get toys.

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Make-A-Wish really goes all out for its families.  Aside from the amazing location, we went to Magic Kingdom, Universal Studios, and Sea World.  Each day brought a new adventure.  The fantastic people at the wish organization even think about the small things.  There was money allocated for souvenirs for our trip.  So of course, each kid brought home Mickey ears.

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It was 7 full days of family and fun.  We weren’t concerned with therapies or school.  We didn’t need to make any doctor appointments.

It was a week of our kids being……just kids.  They were free.  They were accepted.  They were cherished.  They were making memories.

It was, well, magical!

We were just us.

A family.

PT and OT and Speech…Oh My!

Parenting three children is never easy.  Each child has their own schedule, their own needs, and their own sweet personalities.

Parenting three children with special needs presents even more unique challenges.

Therapies!

While we love all of our therapists~~past, present, and future~~there are a lot of them.

Matthew has 3 therapies he receives while at school:

  • Physical therapy
  • Occupational therapy
  • Vision therapy

Next year we are planning on adding speech to his schedule!

Autumn receives 3 therapies at school and 1 at home.

  • Occupational therapy
  • Speech therapy
  • And physical therapy comes to our house 2 times a week.

Fischer has a ton of therapies!! 

He receives services through ECI.  Those therapists come to the house.

Through ECI:

  • PT
  • OT ~ 2 times a week
  • Speech
  • Vision

He also attends West Texas Rehab 2 times a week.

Every Monday and Wednesday, Fischer gets

  • PT
  • OT
  • Speech/Oral Therapy.

If you lost count, that is a total of 18 therapies a week, or a total of 630 minutes a week.  Or 10.5 hours a week!  And it is spread out so that we have at least 1 therapy every day Monday through Friday.

To say we are tired is an understatement.  Luckily, summer is here, and our therapies are currently decreased.

Here’s the thing:

All of the therapies provide something for our children. Each therapist works on different skills and goals for our children.  And each therapy is worth the time they are with us.

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For example, Vision works on both visual skills such as tracking and engaging, but vision also focuses on daily skills such as choosing a shirt to wear and brushing teeth.

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And we are grateful.  For them.  For their time.  For their unwavering commitment to our children.

Because, these therapists don’t simply wander in and work with our children.  They educate us.  They teach us to do what they do.  They help us to parent our children better.

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And they listen.

Life may be crazy and hectic.  Life may be busy.  But it is all worth it.

Eventually we will “graduate” from some therapies.  Fischer will transition into the school system next year.  ECI will be replaced with the therapies offered at school.

Eventually Autumn will figure out this walking thing or choose to no longer want to walk.  She will one day graduate from PT.

Eventually, Matthew may get to a point where his therapies are no longer helping him, a point where he is at his “best.”  At that point, he will “graduate” from services.

And eventually, the support and care we receive from all of our therapists will be a memory.

But until then, we crave this crazy life.  We thrive in this busy schedule.  And we are blessed to have access to professionals who see the potential in our children.

 

~~~~But, I am guilty of sometimes canceling appointments in order to give us a day off~~~~