Saturday, April 2, 2011

April is Autism Awareness Month

Anyone who knows me, know that Autism is an everyday part of my family's life.

My daughter, Erin, began showing Autistic traits from the moment she was born. Her rooting reflex was completely off kilter and she really didn't care much for being held. I watched her struggle to learn to roll over by rocking her little body from side to side until she managed to lay on her belly. These were all early symptoms of autism....though we didn't know it at the time. Then came the "not talking". When she was born, the neighbors on either side of me were also pregnant. All three of us had baby girls within 6 weeks of each other. As I watched my neighbors' daughters babble their first words, play peek-a-boo, and become more and more interested in the outside world... my baby girl was silent. She lined up objects on the kitchen floor one against another. She screamed in pain when I bathed her and struggled out of whatever clothing I put on her. When people....including my own family would come to our home.... she would hide from them and shriek in terror.
I kept taking her to doctors......looking for answers. She was healthy.... just was exhibiting all of these strange behaviors. You see... this was over 14 years ago and the Autism had not yet become an everyday word. The doctor's told me....."some kid's talk later than other's" and "she just has Stranger Anxiety". They told us because she had no siblings and wasn't in daycare that she didn't have "enough" exposure to other kids.She was already enrolled in Gymboree, so I tried to get her out and about as much as possible.
We soon discovered that Erin was going to have a sibling...... Throughout my pregnancy with her brother, we kept taking her to the doctor with still no answers.
There was a brand new Pediatrician opening an office about a mile from our home, so we got bothe of kids in as patients there right around the time of Danny's birth. We took Danny in for a new baby check-up when I asked the new doctor about Erin. After watching her play in the corner for about 90 seconds, this wonderful new doctor told us that he wanted her evaluated by a number of specialists as soon as humanly possible.
From there, life became a tornado. When she finally was diagnosed with with this strange condition called Autism.... we were in a fog. The only time in my whole life I had heard that word was in the movie.... "RainMan". She wasn't anything like the man in that movie. But at least someone told us something concrete....not just "she'll grow out of it". I left my teaching job behind and started therapy.... there was speech therapy, occupational therapy, behavioral therapy, equine therapy, aquatic therapy, just to name some.  We had meetings and appointments and more meetings and appointments. We learned Floortime, Sensory Integration Therapy, Applied behavioral Analysis, TEACHH among many others. All of this and I had a newborn to care for.
Erin seemed to be progressing, although slowly, in her therapy... the speech therapist was very patient and was able (after many weeks) to coax her out from under the table and start to duplicate vowel sounds. My little girl was almost 4 years old.
During this time... Danny seemed to be developing normally. He was nothing like Erin as a baby. He loved... even needed to be held and reached out to us all the time. He had great eye contact, played ball and peek-a-boo and even started to talk. Then, right around the age of 15 months he regressed. This was not a slow process but something that happened almost like time lapse photography. He went from a beautifully engaging baby boy to a child that was in another world. This happened in about seven days. All he did now was walk around, carrying a wooden spoon in front him, staring at it intently. Nothing else existed for him. He didn't respond to his name. He hardly ate anything. We knew what was happening and we were powerless to stop it. The pain was so great for us that we could barely function.

I found the strength to keep fighting. Erin had progressed. She was almost 4 1/2 and she finally said her first words..... I had to fight for my son too now. I called for an evaluation. The professionals and doctors were so hesitant to label him with autism at such a young age. I pushed hard and finally got the label I needed to start therapy services for him. Danny was the youngest child in Pennsylvania, at the time, to receive wraparound therapy services for a diagnosis of Autism.

My world is still surrounded by autism... that fact will never change.
Erin is now 16 years old and a sophomore in high school. She loves art, animals, theater and all things Disney! She was even nominated for the National Honor Society this year..... we're still waiting to see in she got in. She is probably one of the sweetest children you may ever meet.
Danny is my Baby Huey! He is now 13..... he is 6'2" and weighs 240lbs. Though he is still non verbal, he has an awesome sense of humor. He has learned to communicate with basic sign language and gestures and is learning to use an electronic communication device to "speak" to us. He loves movies, books, camping, motorcycles and Disney.

This kit was created to help raise money for Autism Speaks..... to help raise awareness and search for answers in the puzzle that is Autism. I am thrilled to have Collaborated on this kit with my friend Denise and if you wish to purchase the kit......please pop over to her blog to do so.





Created by Linda

Created by Linda

Created by Cynthia

Created by Lisa

Thank you for listening and your support!

6 comments:

  1. Natalie, since the early DISigns days, I was in awe of your creative talents and your dedication knowing that you had 2 special children to care for. Each day, I'm amazed that you work long hours, care for your family and still find time to crank out stunning Disney kits. You are an amazing and strong woman and we all stand back in awe. Thank you for sharing your story. Hugs.

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  2. Natalie, my 14 year old nephew also has a form of Autism...Like you son Danny, he was a perfect baby boy...Then around the same time as your son, his development stopped...After years of continue therapy, he is now a freshman in High School...Thank you & Denise for a great kit..I love it..

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  3. Thank you for sharing your story Natalie. You are truly an inspiritation in your strength and character, and your kids are amazing. Love this new kit!

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  4. Natalie, thank you so much for sharing your story. For several years I taught special education in a jr. high school and I have such a place in my heart for the parents who are blessed with these special children and day in and day out help them learn to grow and thrive with their unique needs and abilities. I appreciate the opportunity to help you help support such a worthwhile cause.

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  5. You are such an inspiration for all parents who are raising children with special needs. God bless you for sharing your life with us. I love your kits and hope this contribution will help others!

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  6. Love you Natalie! Thank you so much for sharing this story with me. You know that I can relate to your story in my own way and it is a blessing to know you!

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