Tuesday, June 15, 2010

Music and my Angel

I made a change to my blog that you might already be noticing. I added music again. I used to have it on my blog, but took it off several months ago.

Let me tell you why it is here and hopefully you can take a second to listen to the first song I have on there.

Recently two of the blogs I read daily, with special needs kids, have passed away. There is nothing like seeing what a family is going through and how hard that must be to put your own life back in perspective. I have never met either Carter or Ben, but have been profoundly affected by their stories. I have done more soul searching than ever the last couple of weeks. I have found some great strength and peacefulness through music. I came across the song 'He's my Son' about 2 weeks ago. I have to be honest with you and tell you it got me. I was very teary eyed while I replayed it to really listen to the words. It's amazing. If you have some time.... please listen. You won't regret it.

Now.... I will finally let you all know what 'Angelman Syndrome' is. I will refer to it as AS... so I don't have to type it out several times.

Here is the medical version of Angelman's.

ALL AS kids have:

~Normal prenatal history and normal head circumference at birth
~Normal metabolic, hematologic and chemical laboratory profiles
~Structurally Normal Brain by MRI or CT
~Delayed attainment of developmental milestones without loss of skills.
~Speech Impairment with receptive language skills and nonverbal communication skills much higher than expressive
~Movement or balance disorder, usually ataxia of gait
~Behavioral uniqueness, including frequent smiling or laughter, happy demeanor, often with hand flapping movements, short attentions span.

80% of kids have:

~Delayed or disproportionately slow growth of head circumference, ususally resulting is absolute or relative microcephaly by age 2.
~Seizures, usually starting before three years of age.

Fewer than 80% of kids have:

~Flat back of head (brachycephaly)
~Sucking and swallowing disorders, excessive chewing and mouthing behaviors.
~Feeding problems in infancy and early years
~Uplifted flexed arms during walking
~Extreme sensitivity to HEAT
~Sleep disturbances
~Attraction to/fascination with water.
~Sensory Issues
~Severe Constipation

So there you have the medical facts on the signs and symptoms of Angelman's Disorder. The chances of a child having AS is 1/15,000. And just to reiterate what I did say in a previous post, AS is a chromosome disorder. Specifically a mutation on the 15th chromosome.

So what does all this mean?

There is no cure. The only treatment is to treat symptoms or problems that are caused by AS. The good news about AS is that it is not a regressive disorder. Which means all skills that Josh gains, he won't lose. It just is so much harder for him to gain those skills. Speech is a big one with AS. Most kids are not verbal... at least fluently. I have found some research that says some kids have learned up to 60-80 words. But they will always have problems with verbal communication. They do understand most everything, but just can't communicate.

If you have any questions about AS, please feel free to ask away. I will do my best to answer them and if I can't, I have my sources to find the answers. I think I have accepted his diagnosis just fine...... it's just been nice to find a name to all the weird diagnosis' Josh has. He is such a sweet kid and I have said over and over... he is an angel. He deals with alot and he puts up with alot, and he is still just happy as can be. He is such a special and sweet boy.


Lori said...

thanks for explaining angelman's. sorry that's the case, but he has got one awesome Mom to help him through this. will he be able to communicate through sign?

Jessica said...

YOu are so amazing! I am always inspired by your strength and abilities to be the best mom to Josh.

That song He's my son is the reason I started bloging. That song hit me about a year and a half ago while I was listening to songs of the sabath. It is so emotional for me listen to that I now always work on my blog with the volume on mute so I don't cry through writing. Glad It has touched you.

Deb and Spence said...

I'm so glad to read what it's all about. I think the best thing is that what he learns he keeps. It's so great that it doesn't regress. How do kids with AS do with other means of communication like computers and things like that? I know some kids at our school would use small little computer/typing things to communicate.

Tanya said...

Thank you for a good explanation. It also sounds like there are some positives to this diagnosis, like that he will retain the skills he learns.

Heidi said...

Wow. That is a lot to deal with. I am glad that he will be able to retain the skills he learns. I know that you will be patient with him and help him learn all he can. He seems like a very sweet boy.

azgirl said...

Yes the song is beautiful. Our Heavenly Father is with you family. You and Scott must really be special parents to be blessed the the children you have. My prayers are with you. I also put you name in two Temples to day. Did you is the song on my FB for AS? I love you.

Annie said...

I bet it feels so good to know what is going on and that he wont regress! He seems like an angel boy and he is very blessed to have you for his mother.

Chantel and Brian said...

I'm so glad that you know where he stands now. That is a really great song. They play it on fm 100 on sundays and i've always really liked it