A Video of Of Our Bubba

This video was made by Cedric's father, Fred. I am so amazed and blessed continually by my husband!

Wow life has been busy!!

Oh my it has been quite awhile since I talked about my little man. Well school is ok, we are still working out the kinks. Cedric is needing alot more sensory stuff when he comes home, I think it is because of all the fine motor and increased structure that comes with kindergarten. We got our first packet for fundraising at his school. I have been crying everytime I look at it. I think about taking him to different homes and thinking about what he would say...if he could and then I lose it. Gawd you would think I could come to grips. But any who...I am getting his Step by Step and pre-recording what he would need to say and then he and I will go and do our fundraising. Cedric has started back up with speech in Sacramento, and Dad is taking him twice a week. It looks like we got another great intern this year. The goals she has laid out make sense, I am looking forward to seeing the growth. Dad has been taking him since Cedric does much better without mom around...I think my little man is really growing up and boy I wish I put him in a shoebox! We are looking forward to our first Northern California AS Family Gathering coming in October. I can't wait to meet all the families. I made business cards with this blog address for those moments at the grocery store and such when people are interested to know more about AS. Cedric's lil sister, Alyssa is doing fine as well, she gives her brother hugs before he goes to school on what she calls the "bubba bus". Bubba is Cedric's nickname.
Well take care all, and thank you for taking the time and interest in our kiddo.

Heading off a Surgery

Well we finally got Cedric in to see a great doctor in physiotry. Cedric has been in braces since he was about 2yrs old, because he walks on his toes. Unlike most kiddos his age his braces have to be made out of adult grade plastic because of his strength. This can be hard over time on his muscles, bones and tendons. The biggest issue is to preserve his ability to walk and while the braces have been awesome, as he grows his tendons will get shorter. So we have started him on Baclofen to help relax his muscles. (http://www.drugs.com/baclofen.html) In starting this medicine we hope to stem off his heel cord lengthening surgery until he is 8 yrs old. I am pleased to say it has been working! Cedric is back to tolerating his braces better, especially the right one. Also, while he is out of braces he is standing with flat feet and walking much flatter...in all his years in braces when the braces came off he never did this. We are so excited to see this change!

Healing with Poetry

There are times when words are caught in our bodies, stagnant and causing ill effects on our manner and mien. There are times when those words then flow and become wonderful healing opportunities for ourselves. It is my hope that this bit of poetry is helpful to others as well. Enjoy...



A blessing was born upon a day

Near perfection in every way

Gathered in my arms you sleep

Ever full my heart, sadly it will weep

Lurking deep within your form

Missing pieces, will become the norm

Although my heart will roar

Nothing will heal this sore



Specialists line up in a row

Years fly by 'ere we find our foe

Now the answer is clear

Darling child, you're an angel dear

Rendered voiceless though you are

Opulent your soul shines like a star

My lamb, how blessed are we

Each moment with you, our beautiful destiny

Angel Proofing

Well life with an Angel is always exciting! Especially when my learning curve is extended!

Cedric's room has always been a safe room. We have no toys out where he can get to them, they are nestled in his closet. The biggest reason for this is, he would never sleep. He does have a television and that is secured on the wall about 5 feet in the air, with his light aquarium. All cords have to be run to his closet otherwise he would engage in electricity experiments. The window coverings are very well secured with a 1 by 2 over the top because traditional rods he has been able to pull down. My Cedric is quite the Hercules! We also gate his room to prevent midnight snacking or wandering opportunities.

But this last week we had a new challenge. Cedric has had a cal king bed for a few years now. Our reasoning, with the times we might need to sleep with him, we needed to be comfy too! For a kiddo not quite 4 feet tall and only 45 pounds he is a bed hog! (His Dad would say those are my genetics!) So much to our surprise to find our lil man pushing his bed across the floor! Yep you read that right, he has been wedging himself between the wall and the bed and then pushing it towards the door. Can anyone say trying to escape! Actually I think it is deep sensory seeking behavior...but that is an idea for another day. So the question is how to secure a cal king bed to the floor. Luckily we tore up the carpet a long time ago and have the old hardwood exposed. So Hubby and I talked on how we could accomplish this, there were several answers, many including large pieces of wood, studs and lag bolts. Until we remembered we have hardwood floors and some old 2 by 4's out in the garage. Yep we screwed 4 inch screws through the 2 by 4's directly into the floor, butted up to the bed! The working theory is that Cedric should not be able to lift the bed over the "bumps". So far so good!

The Box

Greetings & Blessings to all who read this.

As humans we try to find the place we fit, our box, an area that defines us to ourselves and to our communities around us.

When we have our children we begin the process for them. It is natural. "I want Beth to grow up like such and such", "I hope David likes to do such and such" Then our children start to create their own boxes with likes, dislikes, friends, and activities.

And sometimes our kiddos are given a box from birth: genetic disorder, cerebral palsy, autism...the list goes on. As a parent we try to get an understanding of this box, sometimes like in our situation the box is cerebral palsy but later we found out the box was Angelman Syndrome. With the change in diagnosis for us there was a sense of relief, I know that may sound weird but I had carried a huge amount of guilt over my son's birth. It wasn't easy, there was meconium, he had heart decelerations because the cord was wrapped and crimped around his neck. They had been inducing me for over a week and I was exhausted. I had talked to my doctor about just doing a c-section but wasn't very adamant about it, hindsight of course I wish I had been, we ended up with an emergency c-section anyways. So that hesitation has haunted me, would things have been different if I stood up for my kiddo and myself, because of my weakness did my kiddo suffer. So upon learning my son has Angelman Syndrome that guilt was released. I had worked on releasing it for 5 yrs but this let me finally release it into well wherever. I had been doing what needed to be done for my kiddo within my box of guilt, somehow trying to make up for what I believed were my deficiencies.

So now there is a new box on our doorstep...Angelman Syndrome. What are the parameters of this box? Well there are general parameters in looking at the clinical diagnosis of what Angels can and cannot do. However it is through www.angelmanforum.org that I have found and been reminded that boxes stretch!

It can be frustrating when it comes to services and schooling for special need kiddos, we need a diagnosis, that box that says oh yes you can get such and such or no you can't have such and such. Then once we have people and services in place comes the battle to pull our kiddos out of their box. I have found this especially difficult in the school district. Trying to get them to see our kiddos benefit from certain services, maybe the progress isn't in their idea of what it should be, but whether your kiddos progress is Mt. Everest or a rolling hillside, the point is there is progress! My kiddos progress is a little like the lil train slowly moving up a hill, but hey he is moving and should it flatten out for awhile well I know there is another slope on the way.

So my roar to myself and to all families out there...
Yes there is this box that gets hard to carry, that is ready to define limits on our kiddos from the outside world. BUT... this box stretches as our Angels light up our life everyday. Punch out those borders! Specialists may say one thing but parents of special need kiddos who are with their kiddos 24/7 in the trenches know their kiddos best. Boxes are our guidelines not our definition.

We all know coloring and venturing out of those lines is where the joy of life begins!