Friday January 30th 2009
After only 4 nights of decreasing his Risperdal by only 0.5mg we started seeing some negative behaviors more stimming and a lot more outbursts. We are not 100% sure it was the decrease as we also started a new liquid multi vitamin on him at the same time. He was taking a certain kind of vitamin from Whole Foods and now they do not sell it any longer so I purchased a type he used to take about 7 months ago, we have to be very careful with his vitamins because of his food allergies and the Kirkman vitamins that I wish we could give him have raspberry in it and he is highly allergic. So I am wondering if it was the vitamins or the decrease in Risperdal, bad timing on my part I just was not thinking of the two different things at one time. So we put him back to his normal nightly dose of 2.0mg (he is still off of his morning dose 100%) and I stopped the vitamins and am searching for a different brand in case that does turn out to be the the problem...............so many have ingredients he has allergies to, had we never had the L.E.A.P test done we would not know this. So I will keep searching we want to keep him away from the triggers (allergies) that can really effect his weaning down of the Risperdal.
So at this point I am not considering this a failure, just a small set back, in about a week or maybe two we will attempt to try the wean again. I will restart the vitamins in a few days and see if the behaviors start again if they do not then I will attribute the behavior to the Risperdal decrease, if they do then I know it is the vitamins that were the trigger and will use a different kind. I want to pinpoint which of the two has induced the behavior I explained above.
Today I had a patient and his wife come in and somehow we started talking about their one and half year old son that died 2 years ago, he had a disease process called Spinal Muscular Atrophy SMA, those diagnosed with type 1 like he had have a very short life span. They went through a lot with him......... for the first 4 to 5 months they did not know anything was wrong with him but they noticed he could not hold his head up......... his head would move around like a new born, it went from there and he was finally diagnosed, he was on a feeding tube and oxygen, etc...........one night they went to the store and he fell asleep in his car seat on the way home, when they got home he was pale white, not asleep but he had passed away in the car while they were driving. He never missed a nap but that particular day he did not take one and smiled a lot always keeping his eyes on his parents, like he knew he would be saying good-bye to them. She said he looked just like what she imagined an angel to look like when they realized he was gone, pale white and at peace.
We talked about Autism and the mom got upset saying that Autism is getting all the glory right now and all the funding, and that all of the movie stars are jumping on the Autism band wagon she said "at least the kids with Autism are alive"
I told her I understood her pain and I did, I do............she did calm down and we spoke a lot about our children she cried, her husband cried, I cried.............it was a moving experience.........she would give anything to have her son alive and autistic then not living at all.
I told them I understand about the "Hollywood jumping on the band wagon" my point and mine alone just for myself (I am not trying to push this on anyone)
I feel that even though the movie stars and such have kids with Autism and they are getting a lot of publicity at the same time that is good for the cause, sure.....someone like Jenny McCarthy writes a book and talks of how her son is healed (and that is wonderful) but it gives a misconception to those who are not a part of Autism, the public thinks well if he healed then there must be a cure and quit whining about it.......Jenny did it for her son, why don't you? ............I just want to say that although I am grateful for her work in Autism, I am frustrated by the misconception that she gives off not intentionally...... maybe I should say "how her story is perceived"..............so many do not realize the phenomenal amount of money she spends (or has spent) weekly for her son, and if we all had that type of money we could get the same treatments and intensive therapies like she has provided for her son on an ongoing daily basis. That is not reality in our world, the truth is many struggle they are so far in debt they can see no end in sight, we have to fight to get medicaid so our kids can get some kind of Speech therapy, Physical therapy, etc.....we can barely afford groceries let alone all of the special diet type foods that are very costly for our kids, the supplements alone are over the top, we do not have the best experts in our home working with our kids because we can not afford thousands of dollars weekly to pay for them, we have to fight with the public school system to even get our kids 15 minutes a week of speech therapy or to be in a classroom that meets their needs (Thank GOD Joshua has a loving great teacher and staff, we are grateful.)
I am not angry at Jenny McCarthy or any other star that is on the bandwagon I use her because her story is the biggest right now, but I do want the real stories to be heard, of those who have maxed out their credit to get some type of in home therapy room set up, or who are losing their homes, cars, or have no job to feed their child Gluten Free/ Casein Free food, the real stories the ones who's kids will never recover like Jenny's son because of financial issues period.
Just like this family had a misconception of how Autism has all this glory.............I had to point out because 1 in 150 children are being diagnosed is why it is getting a lot of attention, and insurance companies do not cover Autism, that they do not know what causes Autism.................they understood, their sons disease effects 1 in 6000 children, the known factor to cause it is from genes carried in the parents, you can be screened to see if you carry the gene.............had they even known what the disease was maybe they would have had that screen...........saved themselves the hurt they feel...........they wake up daily and try to live but they have a gaping wound in their heart from the loss of their precious son..... in the pictures I saw he looked 100% normal........my prayers are with them and I support their cause.............I support them............
And though I would have never thought I would hear those words that "I would rather have a child with Autism who is alive and breathing, then a dead child that I did not even get to spend enough time with in his short life" that is what they said and how they truly feel, I do not think any of us living it would have stepped up and said "Hey go ahead give me an Autistic child" we would not have chosen this path.............yet they would...............just to have their son alive.
They do have faith in GOD and know that they will be with him again in Heaven and he will have no pain or tears he will be whole and happy, that gets them through the day no matter how hard the day is, they lean on their faith to be able to move on, looking forward to the day when they will be reunited with him again in GODS presence and everything will be healed.
Sometimes you think you got a wrong deal, but then GOD brings someone in your path and you see out of the two of you who really got the wrong deal, I can still hug and kiss my son, I can stare at him while he is sleeping, I can hear his laugh and tell him I love him..............they would give anything to be able to have those gifts.................gifts, yes that is what my son is a gift, I have said it before and I believe it but sometimes GOD brings someone in your life if only but for a moment to remind you........WOW I have been touched today by that couple....I thank you GOD for the opportunity you brought me today, and in case I forgot to say it today THANK YOU for my son with Autism, THANK YOU for all of my children who are alive..............
My heart to all~~~~~Lori
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