I had a delightful time doing a phone interview with Kathy. It’s a lot of fun to hear the voices of some of my favorite blog friends. While visiting with her, I began to see how important ATTITUDE is in dealing with the trials we face in our lives. As you read about Kathy, I hope you will see what I’m talking about.
Kathy has been married for 18 years. It took a while for them to have children (you can read about her 4 miscarriages on her blog). She is now the mother of 3 kids and all of them have health issues. As Kathy puts it, “My life is crazy and great…I love it. My kids give me purpose in life!”
Her oldest son is 12 year old Tom. Tom has Dyslexic issues with sensory problems. He is not fully autistic. “I did a lot of calling to people and specialists to help with Toms issues. We didn’t send him to a special school. It was right for him to attend a regular class so he could learn not to fear. Tom is a bright child. He has a mind like a sponge…the encyclopedia type of knowledge. He asks great questions, and works really hard. Tom has his challenges but does really well.”
While I was interviewing/visiting with Kathy on the phone, I could hear Tom in the background. I asked Kathy if he wanted to talk to me and we had a fun little visit that went something like this:
Me – Tell me about your family.
Tom - It’s good being in the family.
Me – What do you like to do in school?
Tom – I’m having a big concert at school. I’m in the chorus.
Me – What kind of music do you like?
Tom - I like the Beetles.
Me – You have a pretty cool Mom!
Tom - I love my mom and I like her blog.
Lizzy is 9 years old. “When she was 6 wks old, I realized something not right. We started going to specialists to see what was wrong. Lizzy didn’t fit into any one category, so the doctors thought her condition was temporary. She was not consistent with other case histories. She would progress and then slide back, then start progressing again, retaining everything she had learned before. For a long time she wouldn’t talk and we wondered if she could, the she surprise us one day by speaking intelligent, and complete sentences.”
Kathy talked about how as a mother, she would stay up nights wondering what they might be missing. Did Lizzy have food allergies? Was there something they were not noticing that would account for Lizzy’s condition? The hardest to manage would be Lizzy’s mood swings. She could go 24 hours without sleeping, she would have intense screaming fits and then come out it and be fine.
Finally, they found a Child Psychiatrist at Columbia Hospital. “This doctor took time with us, studied the symptoms and found that Lizzy fit closest to the bi-polar model. She is on meds now to help her get control. Along with the bi-polar, Lizzy has seizures and is growing too fast. At age 7, her body was that of a 12 year old. A lot of the time Lizzy lives in a fantasy world. Sometimes she is with us and sometimes she’s not.”
Kathy and her husband spent a long time dealing with “a whole lot of fear and no answers…But everything is holding right now. I used to think that if a child has this and this wrong, then we should be able to know why…but we don’t know why. It’s amazing to not have a diagnosis and be able to join clubs where we can talk to other parents dealing with the same issues. Instead of asking myself am I doing something wrong as a Mom? Is there something I can do to change this? I understand that at this point, this is where we are."
Peter is 6 years old and Kathy calls him her secret wish child. “He is the comic relief in our home and gets along well with everyone. He is strange but part of the family cause we’re all strange. He is creative in building things…the only family member that is gifted in this area. Peter is very visual, and has Spectrum quirks.
Sometimes he would come home and would get frustrated and hit…If Peter had been my first child, I would have a hard time with this, but after raising Tom and Lizzy, I understand that this is not a problem…it’s a challenge and we’ll get through it. Nothing really throws me anymore. This is just who we are, we all have something and it just works. I deal with it using humor.” (If you’re familiar with Kathy’s blog you’ll know what I’m talking about!)
Kathy has some very wise advice for you…
“Go with your gut feeling if you feel something is wrong/right don’t let others sway you. Stand up for yourself and your kids in a helpful way. You will not always know what it is, but you have a certain feeling…go with that feeling. Trust in your mother’s intuition. Force the doctors and teachers to look at the whole child not just the test scores. Doctor’s, grandparents, aunts and uncles, teachers, and friends, all have their opinions, but trust your gut feelings.
Have FUN! I get upset and cry, just like everybody else, this is normal. Every child will come up with something different. As a parent we are to guide kids on their road, but it’s their road and they have to live it. Pain helps us learn…its messy, its sticky and then you move on.”
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