Support Groups

Do you have a support group?  I mean a formal group that meets and makes plans.  Do you have a support group?  Have you tried one before?

I have tried some here and there. Some things I realized:

• Having support is necessary.  My support is not through a "formal" support group.  God has placed several families in our lives that have "special" children, families that we have known long before kids.  I need those people, I talk to them about anything and everything (and perhaps a little too much talk about poop for the average person).
• Meeting new people always helps.  Just like when you have your first child and trying to figure out all of those newborn tricks and adjusting to life, talking to other new moms always helps and makes you not feel as isolated.  The same can be said for moms of special needs munchkins.
• Ideas and Resources.  The special needs world is quite an interesting one when it comes to resources.  It all seems like a foreign language that you cannot understand until you understand.  Understand?  Sometimes you do not even know the questions to ask.  Having parents that know the process or have been through the process is a great resource.  There are programs and benefits that you might not even know existed.  Or even to just get ideas for doctors, new equipment and good looking wheelchairs.
• I do not fit well into a general "special needs" support group.  I do not relate well to moms that have children with autism, for example. Our experiences are so different that it can be frustrating.  It helps to be with those dealing with medically complex issues.
• Not having a specific diagnosis leaves you a little in no mans land, many parents find support within their child's diagnosis.
• I need things to be a bit more up beat.  I have a lot of humor in our crazy experiences...frankly we have to laugh because otherwise things would be to stressful and sometimes just pitiful. 
• I cannot dwell on what we do not have and what my child cannot cannot do.  Yes, there are times that I need to talk through things (despite all of what I write on this blog...I do a lot of my venting on this blog).
• My world cannot only be about medical things and dwelling on Brayden's needs.  Yes, we need to discuss all of that but we all have a life...and our life is (and should be) more than just about Brayden's medical issues.  And Brayden's is so much more than just his medical issues.  He is a funny little boy.
• It does help to have other parents that understand you.  Saying to a neighbor, "We had rough day", means something totally different than when saying it to another parent of a medically complex child...a rough day usually mean something much more dramatic/serious.
• Support needs to fit your personality.  Much like you find friends, your support needs to be a good support, something that helps you...not bring you down.  Again, I find that with great gals that I can call on at anytime of the day and I know will always provide a good laugh about something.

All that to say, find support but there needs to be a balance...the key is finding the balance (let me know if you know how to do that).

Let me tell you about this 6 year old boy

A little info about the big boy...while you enjoy pictures from his birthday festivities over the weekend.
His is so much more comfortable in his own body (finally), which allows him to show his personality more.  And let me tell you, he knows he is spoiled rotten.

Favorite Things:

• Movie - Happy Feet (still his favorite for the past few years)
• TV show - Mickey Mouse, he will "talk" with joy when Mickey Mouse is on, we have some episode on all of our devices, from iPad to the phone
• Loves snuggling, preferably with daddy
• Loves any book that his brothers read to him
• He loves music, really enjoys music
• Being pushed around in his wheelchairs, if he is fussy then he wants to be pushed around and watch out if you stop pushing...
• Rub his head and play with his hair, oh how he loves it
• He does love to be around other kids, he likes to hang out in the big chair in our family room and be part of the fun
• To eat - we do sneak a little lick of something every once in a while...perhaps a little icing or ice cream for his birthday...
  

 His dislikes...and he lets us know quite clearly:

• Touching his face - do not touch his face, he has never liked it and it an easy way to upset him
• Loud startling noises, ie the buzzer at a basketball game
• Getting dressed
• Too many activities, when he is done, he is done
• Mondays, just ask his school
• Tourniquet - he does not like it, he screams more for that than the actual needle



With his Great Aunt Janine who "demanded"
I take a picture of her with him

• Being woken up - do not ever, I repeat do not ever wake him up unless it is completely necessary.  He will be mad and mostly likely be mad the rest of the day

Then Brayden had a grand time at school for his birthday, party hat and all.  Brayden knew it was his birthday and the boy was all smiles all day.  Here are some of photos they sent from school (he tends to move his head a lot when he smiles so it is hard to capture a good picture...believe me, we have tried).
And of course we had to send in some fun treat for his birthday (in addition to having him all decorated).

Look at this happy boy.  He knew it was his day and he was milking it.

Finally wrapping up the festivities last night, a little ice cream cake at home (after his brother's school concert and soccer practice) .

The day of his birth

Brayden is six years old today.  I cannot believe it.  I still call him my baby boy (in fact strangers still call him a baby when he is in his wheelchair...not sure how they think this long boy can still be a baby...).  He is spending his birthday at school (hopefully on good behavior).

Yesterday for kindergarten registration I had to dig out his birth certificate, April 17, 2007.  I could not even bring myself to read over the words, I almost don't want to remember those days.  It was like lightening bolt flashbacks were coming to mind, images of his first few days.  I can go right to the moment after one of his first tests, when the radiologist told us his brain was abnormal and some parts may be missing...it wasn't so much what they were saying because I did not understand all the medical terms then, it was how they were saying it, that dreadful tone doctors get...we came back to our hospital room, I picked him up from the hospital bassinet and sat on the edge of the bed holding him as tight I as could, in complete disbelief that something could actually be wrong with my baby but I knew something was terribly wrong.  My heart races thinking about the fear and devastation we felt, that rocked us to our core.

His birthday is not about celebrating the day of his birth, I choose not to reflect much those dark first days (really first years).  It is really about celebrating we have made it six years.  Celebrating that he is healthier and happier than he has ever been. 
And the boy is happy today...I tried to grab a few smiles this morning as he was leaving for school.

For most of his life I have not thought about his future, not in the way I think about Carter and Luke.  I did not want to think about Brayden's future...out of fear.  For the boys I would buy clothes at the end of the season (on mega sale) to put away for the following year.  For the first several years of Brayden's life, I rarely bought clothes to put away for the following year, maybe just a few things.  Some how I felt like if I tried plan even a little bit, it would not be.  So we have been all about being the moment with Brayden.

Did I think we would make it to six?  Sometimes yes, sometimes no.  The doctors scared us often and made his future seemed so dim and that no matter what his age, he would not be able to do much (one doctor was even shocked when Brayden moved his arms...I was shocked that the doctor was shocked).  We did not know what life would be like with a severely disabled child that could not talk, walk or even eat.  Who imagines that for their family?  We could barely function in the moment so thinking ahead to potential birthdays or milestones seemed impossible.

Wow, he is six years old!  This little boy has changed our life in so many profound ways over his six years.       We cared for him, prayed over him, cried over him, held him, rejoiced for him for six years.  Oh how deep this love is.  We thank God for such a precious gift and having us be his parents.

Registered for Kindergarten

Today was the day for Loudoun County Public School kindergarten registration.  Today Brayden was registered for kindergarten.  Still a little strange to me that we had to go through the registration process for him since he has much more paperwork in the school system already than most kindergartners.  And we register his at our community school not the school he will be attending.

I remember registering Carter and Luke, the excitement and anticipation of them starting school, embarking on their academic time.  For Brayden it feels anti climatic (I do prefer the less drama, I was a mess sending him to school for the first time a few years ago).  His kindergarten class right next to his current classroom.  Not a huge change but saying he will be in kindergarten does sound too big, too old...he is my baby and he will be in kindergarten.

More paperwork for the kindergarten registration.
I did leave parts blank because I did not feel like explaining his medical stuff, it is too lengthy and his school already has his medical stuff, doctor notes, etc.

I do need to have his physical done.  It seems funny for him to have a normal, planned, non-urgent, non-specialist medical thing to do.

IEP for next year is done.  Registration is done.  Brayden is heading to kindergarten, whether I am ready for him to grow up or not.

Caption this:

I forgot to post this from one of his projects at school.  Brayden has some great expressions (and not to mention incredibly yummy cheeks).  Seriously, this face...

If only he could talk...
Would he say, "Get this thing off me!".

Or perhaps, "Really people, again with the craziness?"

Or, "What? What are are looking at?  I am still cute!"

Or, "I am not smiling.  Do you see me?!"

IEP and Kindergarten time

IEP, the Individualized Education Program.
Kindergarten, next school year will be the time for Brayden.

A meeting today that involved many people.  The IEP process and officially being in grade school involves a lot of people.

Brayden is NOT at our local school.  The school cannot accommodate him in any way shape or form.  I love the school for Carter and Luke but there is no way we would do it for Brayden.  It does not have a special ed program, the school is older and barely accessible, there would not be an appropriate place for him to have therapy or even just a diaper change.

So he is bused about 20 minutes from home to a school in Leesburg.  He has been attending the preschool special ed program there for 3 years.  For kindergarten, he will be at the same school just a room over.

Even though he will not be at our local school, all of his coordinating IEP meetings have to be there since it is our "home" school.

The meeting includes the Waterford school principal, the Waterford kindergarten teacher (even through she will not be his teacher nor will he be at Waterford), Brayden's preschool (ECSC) teacher, the Special-ed Grade school teacher (who will be his teacher for elementary school), the Physical therapist, the Occupational Therapist, the Vision therapist, the Speech Therapist...and of course Brayden and I.  Only a couple of people did not attend the meeting.  Brayden was so thrilled with the meeting that he slept, a very deep sleep while we all sat and discussed his kindergarten future.

I can understand how the IEP process can be overwhelming.  A lot of people, a lot of words and acronyms being tossed around and wow, a lot of paperwork.

Going into the meeting we knew the changes that were going to be made and how his kindergarten year would look.  The IEP lays out many descriptions, goals, steps to the meet the goals, as well as services Brayden will receive.

Brayden currently goes to school from 10:30 a.m.-2:30 p.m.  For kindergarten we will be attempting 9:30 a.m.-2:30 p.m.  I am not ready for him to go all day.  It took me a long time to get comfortable with him going 5 days a week.

What I did not realize is that I still have to register him for kindergarten.  I have to go to school with all the other parents on registration day and enroll just like everyone else does for "regular" kindergarten.  And oh yes, that is more paperwork.

Brace for this

We have a new brace.  We thought we were just going in for new AFOs.  The new hip brace was in as well.  A lot of the fitting, tweaking, putting together and it does the job.  Brayden was perfect for the entire fitting.

This brace is for him to wear at night.  It may appear to be incredibly restrictive and uncomfortable for him but that is quite the contrary.  He actually does really well in the brace.  It seems to provide him with support and input that makes him comfortable.

We have been through a few hip braces and so far this one seems to be the best.  It is custom fitted, we can adjust it based upon his needs and it will grow with him.  The purpose of the brace is to prevent his legs from going up into his "frog" position while he sleeps.  It will keep his legs at a 45 degree angle.

I won't go in to a full explanation of the why and what...hip problems, tight muscles, etc.  But this brace should help.

It just adds more minutes to his bedtime routine.  Of course, I had to ask if it was washable because of blow out diapers and all...it is very washable, thank goodness.

And he did get new AFOs, no pictures because they are getting boring...since we have to look at them all the time, can we get more exciting options?