Thursday, February 23, 2012

Sorry to my little blog

How I have neglected you....

It hasn't been without good reason though. I think I have outgrown this and I am a much different person than when I started this blog! Now to think of a new name and a new more appropriate purpose? I will get back to that.

We are all doing well, Kaylee is exceeding all of my wildest expectations. She is doing great in school, making friends, very happy and one of the sweetest kids you can meet. I am very proud of her and the girl she is growing into.

I have so much to say, and now the ability to say it. More to come!

Wednesday, March 9, 2011

New Problems Traded for Old Ones

Almost everyday I ask Kaylee about her schoolday, and I usually ask about who she sat with at lunchtime. It's not just curiosity that drives me to ask, I have been waiting and asking in fear. I was expecting this day, when she would tell me she did not have someone to sit with at lunchtime.

So at bedtime we were talking and with tears in her eyes, Kaylee could barely say to me "I don't have any friends." She sat with a teacher at lunchtime.

Kaylee is still behind in her social maturity and her ability to have conversations with others. Her language skills are very basic, but she has come along way in 2 years. Just 2 years ago she began actually talking TO people and understanding what is being said to her. This summer Kaylee was able to ask questions. Even though Kaylee is doing so well now, we have traded new problems (troubles making friends and fitting in), for old ones (autistic behaviors and illness). Isn't that life? We make it over one mountain only to climb another.

It just feels so unfair, to have this little girl who has been through so much in her short life and to know the obstacles she has overcome to have to live with feeling different.

I was told by other moms who have been through this that the social skills come last in autism recovery. I just hope these skills don't come too late and Kaylee feels self-conscious by then.

But what can I control? Not much. All I could do was hug her and reassure her that she is a great little girl who can make friends.

And give her some extra fruit snacks in her lunch to share with others...

Saturday, February 5, 2011

My Health - A Piece of Kaylee's Puzzle

This is out of my comfort zone for me, but if I didn’t think it was important or relevant I would not have shared my personal health problems. Maybe my sharing what I am going through will help so many moms who are doing a nearly impossible feat raising (or even recovering) their child with autism and they are under the impression that their poor state of health is due to lack of sleep and stress. But for many moms it is much more than that.

My story begins in 1998, when I was a senior in High School, I came down with a weird illness and the doctor was not sure what was wrong with me. A number of tests were done to rule out Leukemia, Mononucleosis or pneumonia. I was eventually diagnosed with Epstein Barr Viral Infection. I was told I would recover on my own with rest. My lymph nodes in my neck never went back to their normal size, and for years I would suffer recurrent strep infections and mysterious illnesses that would surface whenever I was under stress.

Shortly after Kaylee was born, I went to my doctor and told him I was so tired and achy. I felt like something was wrong with me. He decided to check my thyroid for an underactive thyroid and also rule out anemia, both tests came out within normal limits. After that nothing else was discussed and soon after I was expecting my 2nd child and then my 3rd child, and believe it or not, I actually felt better during my pregnancies. Now that it has been 3 years since I had my last child, my health has been steadily declining.

Here is my list of symptoms for some time now, with periods of remission (during pregnancies):
• Swollen, painful lymph nodes in my neck
• Constant fatigue, sometimes to the point where I feel sick
• Daily headaches
• Migraines in the middle of the night
• Food allergies
• Achy all over
• Difficulty concentrating, especially for long periods of time
• Stress intolerance
• Exercise Intolerance
• Sleep Disturbances, insomnia
• Unrefreshing sleep (waking up tired and sore)

A few months ago I went to a new doctor and I was diagnosed with Chronic Fatigue Syndrome. Right now there is nothing my doctor can (or WILL) do for my symptoms. If I am careful about what I eat (no wheat or dairy, just like Kaylee), and if I make sure I am always taking Aleve, if I get plenty of sleep and do not push myself too hard physically, I feel relatively ok. But the truth is most of the time I feel sick. There are many more “bad” days than “good”. Everyday is a battle for me, I constantly need rest and I have to be careful about the foods I eat, take Aleve and coffee certainly helps too.

But most importantly, I truly believe that my poor health is definitely a piece of Kaylee’s Autism puzzle. I believe I am sick with the same thing that is affecting Kaylee.

I will explain more about this in my posts to come. I have so much information that I have been working on for many months now and because of my health problems I have found it difficult to organize my thoughts but I will do my best. Please be patient with me as I try to explain what is going on and please ask me me…anything!
My new email address is for anyone that wants to ask me questions, etc.

Be blessed!