Monday, September 26, 2011

{Play Time and Other Progress}

Park-6

I just wanted to take a second and thank all my blog readers for your amazing support and excitement over our decision to adopt and welcome another amazing child into our home and as a part of our family.  We are so excited and eagerly await finding him or her.  For now, we simply trust God -- easier said than done, but we really are sitting back and enjoying the ride and trusting in His perfect timing.  

Park-5

Park-4

Things are going so amazing with Angela right now.  After deciding to steer away from Angela's IEP and create our own plan for her I have felt this huge weight lifted off my shoulders.  It was just not right and the way we feel now as a family confirms that we were not ready to start the educational services just yet.  Angela will begin outpatient therapy at the Children's Hospital of Philadelphia on a weekly basis, which frees up so much of her/our time for doing things like we did today and continuing to make amazing progress.

Park-7

Park-3

Today Angela had her first preschool class at the YMCA.  The class was called Alphabet Soup and is basically a short hour long preschool setting.  The class was not a special needs type class, which we were really excited about.  We began with coloring, moved on to the welcome, story time, a little group activity and then we finished up with a craft.  Obviously I needed to stay with Angela but I provided her with little support and she really held her own socially.

Park-8

Park-9

I was really so impressed.  Because Angela has had limited exposure to social situations in her first two years and also due to her visual impairments she has really struggled in group settings.  Due to her vision impairment, when there is lots of noise that she can't visually understand, she begins to withdraw and reverts to some old inappropriate self soothing behaviours.  Today I didn't see any of these behaviors but rather she was very vocal.  At one point in the class they were passing around a bag that each child could pull an item out that began with the letter of the day, which was "D".   After the first child got a turn Angela began to vocalize, signally she wanted a turn!  I reminded her she needed to wait and was very happy when it was her turn to pull something out of the bag.

I already have plans for next class to better adapt things so Angela can participate even more.  It is very difficult for her to hold crayons, so I plan on getting those cool Tadoodels so she is better able to hold them and create her very own works of art. Also, tapping down the paper is essential -- otherwise she just grabs the paper and starts waving it in the air!  The Childrite seat worked out beautifully during circle time and allowed her to participate without having to need mommies help.  

Park-10

Physically Angela continues to make progress, but it is her social progress that blows me away.  This weekend we attended my cousins wedding and despite the loud crazy reception setting she thrived!  She loved the music and lights and instead of getting overstimulated she danced her heart out on the dance floor. She is continuing to nod her head yes and no and is really letting her wants and needs known -- very well.

Can't wait to see what these next weeks bring as we go back to class and try to add more social activities into her world!


Tuesday, September 20, 2011

{Expecting Owens Number Six}

Madison-2

I read a quote on twitter about six months ago that changed my thinking forever and brought a new understanding and confirmation to the life Adam and I have dedicated ourselves to live. The post said this: "Every family has a purpose. What's yours?".  It literally took my breath away and everyday since then it has come up in my mind and heart several times a day.

Purpose is a powerful word.  It implies that something was created for a specific use -- it was intricately designed to perform a task and when used in the proper way the end result is simply amazing.  Its easy to look at an object and fully understand it's purpose and to not question it -- I use a spoon to eat soup.  If I were to try to use a fork it simply would not work.

Madison-4Madison-5


When a family finds their purpose it's nothing short of a beautiful display of God's perfect design. Our family is so excited to begin the process of finding Owens number six and further embracing our purpose as a family -- taking children who are deemed unwanted and showing them just how desperately wanted they truly are -- how they have a perfect place in this family and embracing their abilities and giving them a life filled with hope and joy.  

We fully expect people to not understand why we do the things we do -- and that's ok because this life may not be the purpose your family has.  But for us, this works and it works very well.  Adam and I are excited as we to prepare both Madison and Angela for the arrival of their sibling.  Madison is very excited and Angela will be thrilled to have a playmate at home while her superhero is in school.

Madison-3


With the addition of another child comes change.  It will change our parenting strategy in many ways.  We have already begun to think of ways to make sure Madison maintains her time with Mommie and Daddy outside then world of special needs.  I've been brainstorming weekly Mommie and Daddy dates and also maybe a Mommie and me journal. 


Madison-6

We fully trust Gods perfect plan.  Our little boy or girl is already found, we just need to wait and trust and be willing to step out of the boat and into the water.  

After all that's where the excitement is!

Monday, September 19, 2011

{Doing What is Best}

blog-2

I've shared on here before about how Angela turned three and she aged out of her current Early Intervention program that was providing her with her therapeutic services like occupational therapy, physical therapy and speech.  Angela has now entered the educational system -- which right away bothers me, as my little girl is three years old. But that's just my opinion and a while other blog post.

Anyway, we have been introduced into the world of IEP and legal mumbo jumbo.  We had petitioned to keep Angela at home, since we are still trying to create a stable environment for her and better give her the feeling of permanency, not to mention she is rockin in her development and we see no need to change that! Angela was evaluated by our local intermediate unit and was found to need a certain level of services -- which I understand since she is indeed disabled.  I totally get her need for services.  What I do not get is that I have no say in how much services we as a family are willing to accept.  I was able to talk them down initially but they will not go any further.

blog-5blog-4

If I may boast a little bit.  We do amazing things with Angela.  It's just our talent if you will.  Some people are artists, some good with numbers -- we rock out providing care for kids who need a bit extra.  We are creative and also have so many resources at the tip of our fingers if we need ideas and strategies.  I will be the first to admit that I need help with teaching Angela to walk and stand.  We are doing pretty good, but I don't fully understand how the body works and how high tone plays a role in taking steps and other random things like that.  So -- I really wanted PT for Angela through the IU but felt that all the rest was a waste of the Therapists, Angela's  and our families time, not to mention it takes her away from the biggest opportunity to develop -- living life!

Well, educational based services do not work like that.  If her IEP says she needs "x" number of hours per week of therapy she has to receive that -- no matter what we want.  We can't just pick PT and not take the entire package. Well, this package will not work for us.  I have nothing against services, but for Angela, at this time and in this family it's not gonna work.  However since we still want and need PT we are going to get her private PT most likely though CHOP.

blog-1

Now with all this said I am fully aware that I can fight for what I feel is right.  But to me it's totally not worth it.  As a special needs momma, I will have my fair share of battles in the future.  I will pick and choose which ones are really important.  This one is not.  I need these people to like me cause in a year when Angela is ready for school I'm gonna ask for a lot.  A Lot. I need them to be on my side.

Angela continues to make progress in all areas.  She is standing and taking occasional steps with assistance, she is playing with lots of toys and has moved beyond the need for "sound" toys, but now is enjoying playing with blocks and other small toys.  She is putting objects "in" and "out" of a container and she is utilizing her ability to nod her head "yes" and "no" in very age appropriate ways. 

Love this girl to bits.  She is amazing -- so grateful to provide her with everything she needs -- and rest assure she will get everything she needs. Oh, and see that cute headband?  It's DNA! She is supporting her big brother as this week is Mito Awareness week.  Go learn more. Go buy a headband.



Thursday, September 8, 2011

{Extraordinary Moments}

Angela-2

As most of you have seen, if you have been watching our story for this past year, Angela is growing and developing in amazing ways.  It seriously blows my mind to look at photos from last November when we first met her  and just ten months later, she looks like a totally different kid -- there is life in her eyes that before was rather difficult to find.

Angela-4Angela-5

Since Madison is now in school and can no longer be Angela's buddy in the child care at the gym, Angela is now my official running partner.  It's no easy task for either one of us.  Angela gets bored sitting in her chair as I run around the track, and well, I get tired pushing her 150 plus pound wheelchair around the tight turns on the 1/13th mile indoor track.  As soon as I get going it's time to turn that beast around another corner.  Not much fun -- but it's what we need to do for now, until Angela is ready to go into the child care by herself.

Angela-3

Anyway, since Angela has been getting so bored,  the other day I decided that I would run a mile then let her get out and "walk" as far as she would go, then put her back in and we would run another mile or two together.  When I say walk I don't mean she just gets up and moves her legs like you and I do -- but it's still an extraordinary moment.  Something clicked in Angela's head these past few months -- the I can stand on my own two feet switch was turned on, and it is amazing to see.  I can stand behind her and give her a little bit of support under her arms, or she will grasp a hold of my fingers with her arms extended and stand -- all my herself.  Huge stuff.

Well I figured if she is now standing, why not start walking.  So I have been holding her arms from behind and prompting her feet with a little tap from my shoes and they move forward.  We repeat this over and over and she will even pick her own foot up to step every once in awhile.  The most amazing thing is -- the other day she walked half the track.  Holy freakin' cow.  This is totally an extraordinary moment.

Angela-6

I am so proud of her.  There are some days, which is pretty common in the special needs world, that I look and question -- are you really in there?  Then days like this reassure me -- of course she is in there!  Angela is such a smart and driven little girl. Make me so excited to dream for her.

I said the other day  -- one day she will walk.  Someone corrected me -- one day she will run.

Yes. Totally.

Tuesday, September 6, 2011

{Death}

107

It has almost been two years since I last held my baby boy.  I remember those last hours before he took his last breath.  I remember panicking trying to make as many memories possible in the short time before he would die.  I remember running my fingers through his hair so vigorously, almost pulling it just trying to feel so deeply what his hair felt like.  I remember holding him and putting my nose right up against his skin panicking that I may one day forget his scent.

Today as I was working on this blog trying to write Gavin's story, it just hit me.  The deepest grief, as if I were sitting in room nine at the end of the hall all over again.  But this time I can most definitely say that I have not forgotten.  My love for Gavin is still so strong and my pain in still just as raw.  And that's ok.  In these tears that hurt so bad I feel -- I feel, something I was worried would one day stop.

Death is crazy.

030

Once I became a mommie I had one job -- to make everything better.  When my babies cry I hold and comfort and meet their needs.  This is the most difficult part of losing a child.  Nothing -- nothing I do can change the fact that he is forever gone.

And this is where it gets amazing.  

In the midsts of my pain there is still Hope.

For me to ignore that fact would be forgetting everything I learned through the life and death of my sweet boy.  It's in my pain that beautiful healing can come, it's moments like this today where I'm dressed and ready to go to the gym and not expecting to grieve that God can come and simply love me -- love my ugly grief and help me put back together the pieces until I need breaking again.

Friday, September 2, 2011

{Childrite Seat}

Angela-5

It's the little things that in the world of special needs and disabilities are so stinkin' huge.  For example, this month Angela started standing up with a little support under her arms or by holding on to our fingers.  For most kids at just a few months old the stand up in the lap game starts -- but for kids like Angela, many never are able to stand.  So needless to say this is huge stuff.  Standing leads to taking steps and taking steps leads to walking.  Very exciting.

Angela-1

Angela-2


This week we also purchased this new chair seen in these photos.  Again, for most parents a chair is a chair -- it makes life easier but it's not really life altering.  This chair for Angela is a gift from God.  There are no straps and metal bars, yet it supports her so well.  

Angela-7

Angela-4

Usually anything we put her in requires the adjustment of at least on thing like a seatbelt or clicking tight her lateral supports.  This chair allows us a spot to stick her where she is not laying on the floor and is in a more age appropriate position to do things like play and socialize.  So huge!

Angela-12

Angela-11

Angela-10

These pictures make me smile from ear to ear.  This little girl is so precious.  Her spirit is amazing -- she is so spunky but at the same time a little love bug.  She is growing and developing in way I'm not even sure I thought were possible at first.  So thankful that God gave us this beautiful little girl -- to be apart of her life to both push and love so deeply!