Tuesday, May 6, 2014

How Inclusion Works For Us.


Before we enrolled Angela in preschool we made the decision to not sent Angela to a specialized school but rather embrace the concept of inclusion -- simply including her with typically developing peers in a normal classroom environment.  Of course, it was not the preferred method by the team of professionals who evaluated her, after all she is multi disabled and kids like Angela don't typically go to typical schools.  But the idea of Angela in a classroom segregated away from her peers in a natural environment made me so uneasy.  Why?  Why should it be that way?  Just because that was the way it had always been done?  If a typical classroom environment hasn't been proven to be a bad placement, why should a group of professions simply assume that it's wasn't best for Angela.

Anyway after talking with the team they agreed to make it work. Angela attended a typical community preschool with her nurse and all therapists came into the classroom and provided services in the typical classroom environment.  Angela did awesome.  She is a very social little girl and she thrived.  However, at the end of the year I still had a difficult time picturing Angela in a kindergarten classroom.  We hadn't even touch academics with her - we spent most of the year just getting her to stay focused and not stim in her environment. 


Fast forward to the beginning of this school year. I knew right away that there was no way we would put Angela in a MDS or multiple disabilities classroom.  There was just no need. Angela needed to be with peers who she could model after.  We requested that Angela we placed in a typical Kindergarten classroom, with a very smilier set up to what we had in preschool.

The school was rather hesitant at first.  I went into her first IEP meeting raving about how smart Angela was and how she was really a typical five year old in regards to cognitive ability.  Ha! I'm not sure exactly what they were thinking but I can only imagine.  Looking at Angela, you at times wouldn't realize that she is a brilliant child. After all her body is rather broken.  It's simply a fact.  I hate CP.  I hate that it limits her in so many ways and most of all I hate that it limits the way other's view her based on her outward appearance.  

The first few months in Kindergarten were rather rough.  Of course its a difficult time for all the kids but for Angela is was even more difficult.  But slowly she began to show the school staff her true self and they have gained an excitement for watching our little girl grow and learn.


I don't take for granted the amazing school district we attend.  We gave up so much to move to this area and attend this school and I have no regrets.  Kindergarten looks a bit like this for Angela: She goes in the same door as all the other kids in the morning -- we don't take advantage of any type of special drop off or pick up that makes it easier for us -- so much learning happens in all aspects of life, even learning to walk a bit farther or waiting in line. She stays in with her kindergarten class for all but 30mins a day, when she has special one on one instruction with the special education teacher where they can work on literacy.  All her therapist come into the classroom and work with Angela beside her peers. She does leave the classroom at times for therapy but it's not the norm.  Although Angela is tube fed she enjoys lunch with her peers in the cafeteria.  I've been told kids fight over who gets to sit next to Angela!  She goes to all specials and of course her favorite time of the day is recess.

The kids love Angela -- but not in a class mascot type way -- they truly see her as a kid just like them.  I love hearing stories from my nurses about what the kids love to do with Angela during the day.  They all take turns pushing her chair, being her reading buddy, playing with her at recess -- so many amazing stories.

The MDS teacher adapts all the curriculum for Angela.  Everything.  She puts so much work into each assignment and makes sure that Angela can access it and get the main concept each project is trying to teach.  Angela is learning so much.  She has demonstrated knowledge of all her letters and numbers, is gaining some math skills, recognizing rhyming patterns, knows her colors and is learning to recognize high frequency words -- just like her peers.



Angela utilizes assistive technology throughout her day. Her books are programed into her iPad and she uses a switch the access a sequencer so that she is able to read and turn pages. She uses a ton of low tech flashcards to pick letter and numbers when asked to identify them.  It's really mind blowing.  It's so crazy to think back to this time last year-- I was so worried about how she would do.

Once again she has beaten the odds.

Inclusion is amazing.  I realize it's not for everyone and I realize that it can be a touchy subject, but I also firmly believe many people just assume it will not work and don't even try.  The easiest way is not always the best way.  There are so many things we could do to make our children's lives easier -- but without a bit of a struggle growth sometimes can't happen.

“When inclusive education is fully embraced, we abandon the idea that children have to become ‘normal’ in order to contribute to the world…We begin to look beyond typical ways of becoming valued members of the community, and in doing so, begin to realize the achievable goal of providing all children with an authentic sense of belonging.”  

--Norm Kunc

Wednesday, April 30, 2014

The Upsee by Firefly.


Last week we received Angela's new Upsee in the mail.  This amazing piece of special needs equipment just released to the public this month and you better believe it immediately caught my attention.  Angela desires to move in the worst way.  It's her biggest motivation in life -- the faster, the rougher, the better.  She loves to be up and active in her environment and finally someone developed a way to make it possible.


The devices comes in three separate pieces -- a belt for the adult, a harness/suit like contraption for the child and special double sandals.  I will be the first to admit, when the company first starting showing previews online of this thing I immediately tried to rig one up myself.  I came kinda close by using a baby sling and velcro but it really wasn't even close to this thing, not to mention a bit unsafe.  Trust me -- don't try it yourself, your child will not get the same benefit.  I think the double shoes are key.  They are very sturdy and keep the child's feet in position -- walking position!  The quality is amazing and very customizable to each child.


I was asked how it is to get her into the Upsee.  It's not bad.  Of course, is it ever easy to get a spastic almost 6 year old into anything? It does take a little maneuvering to get both our feet into the harness once she is attached to me -- but we did it, and she actually enjoyed the process and giggled the entire time!


We first took the Upsee outside the house and practiced going down steps and walking around the driveway.  Her face immediately lite up -- she was feeling something she has never felt before.  She was walking.

She was walking.

We take so much for granted.  


This device opens up Angela's world.  It allows her to be involved in her environment -- actively involved.  She is seeing and feelings things she has never seen or felt before.  We took the Upsee to the park and walked up the jungle gym steps and went down the slide together. Wow -- her first time ever.  Again -- her face told a powerful story.  So much joy!


I can't wait to take our next adventure. This device has endless uses -- parks, school, shopping, museums, zoo's. We are gonna have so much fun!

Visit the Firefly site to learn more about this amazing device.

Wednesday, April 23, 2014

Doing Life Together.


I know.  Two post in a row -- don't get used to it.  I've got a ton of amazing photos to share of my beautiful little ones so get ready for a sudden burst of blog posts.  Are these photos not amazing?  They kinda take my breath away.  Look a Jayden's face -- so full of life.  What speaks to me the loudest is that Jayden clearly knows he has a daddy who loves him -- exactly the way he is.



I love watching Jayden and Adam together.  They have such a special bond.  It's really cool to see how a father son relationship can form despite the physical and cognitive limitations.  It's amazing to witness. Jayden knows exactly what daddy is for -- tossing in the air, flipping him upside down and at the same time the best sit on the couch and snuggle buddy ever.



We simply couldn't do what we do if Adam wasn't the dad he is.  We are no where near perfect, Adam and I both have our struggles, but I'm so thankful that being used by God to do big things doesn't require perfection -- not even close.  All we do is say yes -- and just look what happens.



I think photos like these speak louder than any words I could possibly come up with.

Tuesday, April 22, 2014

Naturalpathic Medicine and Special Needs.


Almost a year ago Adam and I made the decision to take a chance with naturalpathic medicine.  I had some friends tell me about their experiences with a local women who uses nutritional response testing to help heal the body.  To be honest, I thought my friends were completely crazy -- I'm a person who is very medically driven, after all Gavin was about as medicated as you can possibly get.  


After Angela's seizures became out of control, with her seizing over three hundred times a day even with lots of medication, we decided to take the chance -- to step out of my comfort zone and see what this naturalpathic medicine was all about.

Of course amazing things happened for Angela including her being totally seizure free for almost nine months now, but big things have also been happening for this little guy.  He's been home over two years and we hardly recognize the kid he used to be.  


About four months ago this little boy was very medicated.  He was on seizure meds and a combination of psychotrophic meds to help control his behavior and emotional instability. Children with severe brain trauma, especially in the frontal lobe, often deal with very difficult behavior.  It's not typical little boy temper tantrum behavior, is very sad emotional deregulation, head banging, crawling out of your skin type behavior.  Very difficult to watch.

We had put him on these meds along with his neurologist to help him find relief.  But what we saw after, was almost just as disturbing -- glazed over eyes, lack of development and sedation.  Totally not what we wanted.


So we starting taking Jayden to the Naturalpath with his sister to see if we could get the same amazing results for him.  Wow.  What a huge difference we have seen.  The first months were horrible, as he detoxed from all his meds, but now it is amazing to watching his little brain wake up now that he is medication free.

He is walking at times with perfect gait.  He can now stand still with perfect balance for short periods of time and even walk backwards and do little squats.  He is now able to use his hands, which is probably the most noticeable change.  Prior to taking him off all medication he had no use of his hands -- they were so floppy.  If he wanted to play with a toy he could but if you handed him anything he would just drop it.  He now can walk over to the toy box, open it up, dig through, pick out a toy and carry it into another room!  He also can throw and like a typical child has learned to hit and smack, which thankfully has lost its novelty.


It has simply been amazing to watch the process occur.  He continues to shock us daily with his new skills.  The other day he walked up the formula cabinet, was able to choose his food out of the three different types of formula we use in our home, and bring his food to me to eat.  These are huge skills -- life skills.  If he drops an object he will get down on his knees to look for it under the couch -- again this is higher level processing that a kid with his level of brain injury simply should not be doing.

We take the kids every other week to get re-tested to the exact supplements and dosages they take.  Both Angela and Jayden take about ten different supplements each and are given right into their feeding tubes.  Insurance does not pick up the cost, but with careful budgeting and planning we have been able to make it happen.  We feel it's a priority above other comfort things we could be buying instead -- they are totally worth the sacrifice.

What I once thought was crazy -- I now consider part of our miracle.  It's so amazing to watch God help restore Jayden's little mind.  We are believing for big things in his life and can't wait to see what the rest of this year has in store!

Tuesday, April 15, 2014

The Trenches.

I've struggled so much with blogging despite the fact that this is something that I love so very much.  I think about it all the time, trying to pin point the exact reason why I just can't seem to write.  I think I've finally figured it out.

We are in the trenches.

Walking through the death of our son Gavin was a horrific experience.  As a mother, I'm not sure there is a deeper pain one can possibly experience -- my own flesh and blood gone. Although four years have gone by the pain is still very real.  Not a day goes by that I don't long for just a glimpse of his sweet face.

With that said after his death Adam and I had an amazing epiphany -- this was our story -- what looked like an end was actually just the beginning of something amazing. Through tears and pain we saw hope, hope that our little boy left us behind.  Then started our journey to adoption -- and the first few years we still were kinda on that epiphany high.

Four years later and we are now in the trenches.

Don't misunderstand what I'm saying -- this isn't a bad thing, rather it's really an amazing place to be.  We have made the sacrifice we felt we were called to make and now we get to care for these amazing kids.  I wouldn't have it any other way.  But being in the trenches mean that some of the frill is also scarified.  The luxury of taking photos on a daily basis, and blogging about our daily life gets pushed to the side.

And that's ok.  

But today I was somehow able to have some beautiful sacred time to write.  Ahh.  It's feels great.

Have I ever told you how difficult the system from which we adopt our kids, is to work with?  It's so very difficult.  Before adoption is finalized you literally give up your life and become an open museum for people to frequently visit and browse.  It's really tough  What is even more difficult is seeing kids, who so desperately need homes, and a system who tries to keep the child's best interest in mind -- keeps kids from actually ever finding a home. Again, so difficult.

In my last post I had mentioned that Adam and I were matched for our last adoption -- a beautiful little girl.  Well, after five months waiting to meet her, the county she is in changed their minds.  Ugh. They gave us all kinds of reasons, and none of them really make sense.  Our hearts were and still are broken.  Once you see the face of a child it's hard not to immediately attach and start dreaming of what life could be like.  We have moved on and are continuing to match for another child, but this little girl will always have a place in our hearts and dreams.  No child should have to live life in a nursing home -- just typing those words just makes my soul cringe.

Living in the trenches means that a lot is sacrificed.  We daily need to put ourselves in check -- it's not about us.  It's not about what we want or what we think is best.  It's all about being Him -- His hands, His feet and trying desperately to show a fraction of His love to the world.