May 27, 2010

Guest Blogger Thursday

Posted in Uncategorized tagged , , , , at 9:06 am by autismmommytherapist

Today’s guest blogger is Mary Lachenauer-Craig, welcome!

Through my Tuesday and Thursday posts I’d like to provide a more widespread forum for parents of children with disabilities to provide more practical tips for other parents, and a place to share their views on raising a child with a disability as well. These contributions will be their ideas and stories, and not necessarily reflect the viewpoints of those of autismmommytherapist.

Hi and Welcome to Autism!

When my son was diagnosed with Regressive Autism; I really felt as though there should have been somebody like Julie McCoy from the Love Boat to usher us into this new community and let us know what activities we had scheduled.  Developmental Intervention party of 2, ABA party of 5; your tables are ready!!!

Little did I know what I really had ahead of me when the insensitive evaluator said as her parting comment, “well at least now he’ll qualify for the Handicapped Preschool”.  Initially, I felt like I wanted to run out into our quiet street and yell that’s the best you’ve got for me?  You’re the “expert” and that’s all you have to offer. Thankfully since that day our family of 4 has been sent numerous angels to help us through our journey on this crazy cruise. I won’t lie to you either some days it feels more like we’re on that fateful 3 hour tour from Gilligan’s Island fame.

My precious Angel’s name is Will. Will turned 5 this May and has been diagnosed for almost three years now. William arrived on Cinco De Mayo with great expectations from his sister who turned 18 months old that same day. He was a chubby faced, snuggly baby whose blond hair shone like a halo as he camped at my breast. He weighed 10 pounds, measured 22″ long and had 2 teeth. Yes, teeth!!! Our family was complete and now my husband and I were living the American Dream.  One girl and now a boy too!  Or so we thought until one cold day in December of 2006!!!

Will hit his milestones and was developing normally according to all the scales & the books.  He was a loving, social, happy boy and each time he smiled up into our faces we knew we were blessed. When he was 18 months old he got sick for the first time ever with an ear infection. It took two rounds of antibiotics to clear it up. When we went back to the Pediatrician they said let’s get him caught up on some of his shots since his ear is all clear.  I had been going slow with vaccinations for both kids since learning of other kids who were vaccination injured. I had told them I didn’t want an MMR until he was 3. It was on the front of his chart in RED!!!!!!!!!

Megan (our daughter) was running through the office after escaping from the exam room.  I was trying to catch her while the nurse and Pediatrician gave William an MMR shot because they had it in stock. At first, I was angry that they gave him the shot while I was chasing Megan around the office. Then I was furious!!!!!!!!!!!!

I remember hearing his cry from out in the waiting room & knowing in my gut that it wasn’t the same kind of distress cry. Moms need to listen to their instincts and not let other people make them feel silly for it. He screamed and cried all the way home and on and off for hours that whole night. When I called the Pediatrician she told me he needed some Tylenol and would be fine. The next day this other child was in William’s place and that child lost all of his words he’d already learned. I’ll never forget that day or the sinking feeling in the pit of my stomach when I lifted my angel out of his bed.

The realization that my angel was gone slowly sunk in as he didn’t turn to us with his chubby cheeked smile when we said his name or how he stopped running to the door to see who was there.  I still remember how lonely and afraid I felt crying softly in my bed some mornings while I heard him bouncing around but no longer attempting to awake his Sister as he had so many other mornings.  He had a blank stare when we took him out of his crib.  It was as if somebody had turned out his bright light. That same Pediatrician insisted William was just being eclipsed by his talkative older sister and I shouldn’t worry. Others insisted he was a late talker (he had already been talking) and countless others tried to ease my mommy guilt by reassuring me he was okay and his ears needed to be checked after that bad ear infection. I had his ears checked and they were fine.  Thank goodness for my mother, an RN who believes in mother’s intuition and our neighbor who is an Occupational Therapist; they encouraged me to follow my heart and “mommy gut”.

Will lost interest in many of the things he’d loved previously and didn’t seem to know how to play with his friends anymore. He was a boy that weighed 10 pounds at birth and always had a very healthy appetite until he was vaccination injured. He hardly eats anything now and can’t even have fun stuff like ice cream anymore because it makes his symptoms worse. We never, ever returned to that Pediatrician & some days I wish I could bump into her out in the store as people are telling me I’m a bad parent because my child is overwhelmed by all the noise & lights and not behaving appropriately in their opinions.

I went against that Pediatrician’s suggestions and called Early Intervention. I put William into a research study just in case so I could circumvent the 18 month-long waiting list at the Developmental Pediatrician. We got the diagnosis of Regressive Autism. That Developmental Pediatrician served me the blow of my lifetime when she told me my son had one of the worst cases of Regressive Autism she’d ever seen and so it began.

When you learn of the impending birth of a new baby as parents we all have such dreams for them.  A mom dreams of seeing that baby’s sweet face and hearing their sweet coos.  A dad dreams of games of catch, catching that first fish, building a tree house, fixing up a first car when he hears the words, “it’s a boy!”  Sports, trips, school activities, colleges, weddings and Grandchildren of your own that you dream of for that child you’ve yet to meet.  Then they lay that beautiful boy so full of promise in your arms you can almost feel the hopes of his future.  Suddenly when you hear Autism all of those dreams shatter all around you and it’s just you and your family left to pick up the pieces & figure out if any of its possible for them anymore.

For me, Autism translates into not knowing for sure if I’ll ever hear my beautiful Angel say his own full name or even I love you mommy.

Welcome Aboard….we’ve been expecting you!

“I can be changed by what happens to me. But I refuse to be reduced by it.” Maya Angelou

Parents of Autistic Children

http://www.poac.net/index.asp

http://illuminatedecorateandfascinate.blogspot.com/

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5 Comments »

  1. misifusa said,

    Welcome Mary! I loved your post and especially your quote from Maya Angelou.

  2. Anita said,

    Hi Mary – sorry for the delayed post…sometimes I have to play catch up! Your writing piece was very touching – I look forward to reading more and learning about Will.

  3. Mary Craig said,

    Sorry I am just getting around to thanking you for the kind words. I’m honored to join this creme de la creme of Autism mommies here who let me know they also do what they need to do just to get through the day. I feel good when I hear your small victories because it gives me hope & sometimes even reminds me from which my son has already come!

    Things have been hectic here since it is IEP season and I do tend to stomp my feet & raise a bit of a fuss each year to ensure my son’s future is staying on course. Hell hath no fury like a Special Needs mom whose child’s services have been reduced!!!

    I just think it’s wonderful what you’re all doing to help build a community for the rest of the Autism moms who need to know it’s okay to feel all that they feel. It’s okay not to thank God for Autism every day of your life & to know that yes a new day does dawn tomorrow. Not all of my days are good ones and I am okay saying that! Too much time is spent by “others” trying to make us feel like how we feel isn’t okay & I say walk a mile in my shoes before you judge!

    I’m proud to count you all amongst my friends and mentors. I’m also proud to say you all help me be a better mom for my son everyday and I thank you for that. Now if anyone has any ideas for my sassy typical, daughter that I could really use!! 🙂

    • Your last sentence made me laugh, I feel like that when I confront the “threes” in my youngest. Thanks for what you said!

      Kim


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