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Wednesday, August 08, 2007 |
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Keeping it real!
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In light of some of my reading on other pages about AS lately,I wanted to post some facts about Angelman Syndrome and talk a little bit about who our little Angel really is and talk about both the good and bad points in our lives.
First,some symptoms of AS:
Retardation
happy demeanor
Microcephaly (small head)
Large jaws
Jerky movements
Unstable jerky gait
Hand flapping
Developmental delay
Diminished speech
Laughter
Motor development delay
Fits of laughter
Absent speech
Microbrachycephaly
Blond hair ,not always.
Eye anomalies ,not always.
Decreased eye pigmentation,not always.
Pale blue eyes,not always.
Maxillary hypoplasia
Deep-set eyes,not always.
Large mouth ,not always.
Tongue protrusion
Widely spaced teeth,not always.
Protruding jaw,not always.
Ataxia
Jerky arm movements
Puppet-like gait
Characteristic arm position
Arms held up and flexed at wrists and elbows
Seizures
Major motor seizures ,common,but not always.
Akinetic seizures ,common,but not always.
EEG abnormalities ,common,but not always.
Reduced muscle tone
Hyperreflexia
Cerebral atrophy
Sleep disturbances
Please note,that there are different degrees of Angelman Syndrome. Some children may have certain symptoms,associated with Angelman Syndrome,but may not have all symptoms listed.
Now with all that said. Also note,that AS is not a disease,it does not shorten the individuals lifespan,it is a syndrome. And I believe that many of the actions of individuals with AS,stems from the lack of communication. I think that they do many of the things they do,because they cannot communicate in any other way. I do however believe that they understand and comprehend much better than the literature expresses. I know that Brady is very intelligent,but just does not know how to express himself sometimes.
Or son Brady has Angelman Syndrome,he truly is our little Angel. Angelman Syndrome is not who Brady is,but it does play a big role in his life and in our lives,on a daily basis. Brady would most likely not be the person that he is,if he didn't have AS. Brady never passes judgment on anyone,he knows how to slow down and enjoy even the smallest things in life. He is happy most of the time,and can make you laugh even in the saddest moments. Brady is a show off,a bit of a monkey actually. He lives to make you laugh and loves to entertain. I often say that if missing part of your Chromosome 15,makes you as precious,sweet,loving and happy as Brady,then more people should have their chromosome removed,lol.
Don't get me wrong,its not always a walk in the part and I wont pretend that it is. We deal with a lot of issues because of Brady's AS. This is not a life I would have chosen for myself,but this is the card I have been dealt,and my sweet little Brady helps me make the most of it. You look at families like ours and wonder how we do it,I know I used to. But in all reality,Im glad that God chose us to look after our sweet little Brady. We just didn't know what we were missing out on.
Brady does have epilepsy,due to AS. He is up to about 5 different types of seizures now and is currently taking 3 meds twice a day to control the seizures. Brady has feeding issues,balance issues,sensory issues,and much more,all due to AS. We have fought to get financial help for Brady,three years now actually. Things like that are not just given to you,in most cases anyway. We have had to fight to get what Brady deserves,and I feel confident that we will continue to fight for him as he gets older. Before you have a disabled family member,you think,well I have paid taxes in all my life,so when or if I ever need services,it will be there,wrong. You think that you are doing good when you pay in to the government,because one day you might need help. But after you have someone disabled in your life,you realise that these services don't come easily,and in most cases you have to fight for what you get. We are Brady's voice, because he cannot speak,due to AS. We are his advocates,because he cannot advocate for himself,due to AS. Much of Brady's life revolves around issues that pertain to his syndrome,doctors appts,therapies,school issues,very little sleep,etc. So with all the doom and gloom statements being said,we love Brady. I cannot post only the good things about our lives,as there are bad things that come along with is as well. I wouldn't be fair to anyone to post only good things,because there are bad things that come along with AS,just as there are other bad things in many peoples lives who don't care for someone with AS. I just want everyone to understand that,though there may be bad things,there are many good things as well.
Brady is a blessing,not a burden, I want to make that very clear.He does have Angelman Syndrome,and no denying that he suffers on occasion,due to AS,is ever going to change that. God made Brady who he is,for a reason. We may not always understand those reasons,but he is who he is, and we love him never the less. The goodness in Brady makes up for any other bad things that we have to deal with. Brady brings new meaning to the word life.
He wakes in the morning with a smile on his face,when he sleeps that is,lol. He always has tons of slimy sugar and lots of big hugs to give. He is not prejudice and will share his laughter and love with anyone,cant say that about many people these days. Brady has truly brought our family closer together and made us realise that we can face any situation,no matter how big or small,as long as we face it together, as a family. Brady is such a joy to be around. He makes friends everywhere we go. Brady lights up the room when he comes in,people just seem to be drawn to him. I cannot begin the express the love that I have for him,he is my healthy,happy,sweet little Angel,and will always be.
Even if we try to deny that Brady suffers at times,mostly due to the fact he has AS,or if we try to look the other way when he does something super embarrassing in a public place,or if we would love for him to be able to do things that his typical peers can do,but accept the fact that he just cant,it doesn't take away from the fact that he does have a disability,it is called Angelman Syndrome,and its not going away. But it doesn't mean that we are giving up on him or that he wont lead a healthy happy life. It just means that that we do accept him no matter what. His life is what it is,and we will make the most of it. AS is something that he will most likely carry with him for the rest of his life. God chose Brady to have AS,and chose our family to have him,and we feel honored that God trusted us with that kind of responsibility,and that he chose us to look after his perfect little Angel. And I think that by denying or overlooking Brady's disabilities,would be doing an injustice to God,Brady,our family and other families that have loved ones with AS or other disabilities. God has a purpose for Brady's life,and I see that daily. He teaches people what pure love and innocence is all about. We can all learn from the Brady's in the world,if we just open our hearts and listen.
We have to teach the world that there are people with disabilities and that's never going away. Were not going to lock them up somewhere and forget about them,they are here to stay. We have to adapt the way that we live,so that people with disabilities can be given a fair chance. If you think about it,we are all disabled in one way or another,just some more so than others. We all have our problems,depression,diabetes,obesity,high cholesterol,arthritis,and the list goes on.
We have to learn to not try and change,hide or overlook people with disabilities,we have to learn to accept them with open arms and do what we can to make a place for them in this world.
Disability is on an all time rise in our world today. There are more disabled people than ever before in history. Its only going to get worse,we just cant hide or deny it. Disorders such as Autism are becoming more and more wide spread. So my point is,accept the things you cannot change,but change the things you cannot accept. We have to pave the way for future generations,its time to start teaching and educating about living life with disabled people. There is a good chance that someone in your future,in your child's future,will suffer from a disability. Remember,we all think it cant happen to us,until it does.
There are many things to focus on,and its ok to focus on the positives,that's what we try to do. But it doesn't mean that there aren't many negatives,and no amount of denying is going to make the negatives go away. We have to learn to take the bad with the good.
I know this is controversial,and I apologize in advance if this ticks anyone off. But I feel that there are things that need to be said. |
posted by angelwings
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4:21 AM
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