Saturday, December 1, 2012
What a difference a year makes: Part 2 - We Have Autism
If you missed it, read part 1 here
2012: WE HAVE AUTISM!
2012 has been hard. We have fought tooth and nail for each and every inch of progress. We have relentlessly battled the exhaustion, the guilt, the tears and the frustration. But by God's grace, we have been victorious! 2012 will be known as the year we kicked autism's butt! This year, WE HAVE AUTISM, autism doesn't have us!!!
I could write all day about all the progress and things Maddox has learned. But here's a small snapshot:
Last year, at 18 months old, Maddox tested across the board at about a 6-8 month level. He was severely delayed in every area.
This year, at 30 months old, Maddox was nearly caught up to age level in every area except speech.
In one year's time, he mastered 26 programs and met over 75 goals in his early intervention program. He uses sign language fluidly and his vocabulary is emerging. He has learned to self-regulate his need for sensory input and academically he is working on many of the same things that Mia is learning in kindergarten! He is THE poster-child for early intervention!
Yesterday for the first time he initiated contact (a little socially inappropriately, but contact still) with another child and played basketball WITH another little boy. If you don't know how monumental this is, let me assure you, we are ecstatic over this!!!!!
There is just so much more that is hard to measure or put into words. If you have spent much time with us, you will know, that at times, Maddox has just been absent. His body was there but his mind was not. We are seeing less and less of that state. When he is overwhelmed or tired, he will retreat and that's ok. He needs to deal with his sensory overload sometimes. But now, when he is with us, he is REALLY with us. He engages with us, he makes eye contact, he tries to make us laugh, he kisses me spontaneously, he gets excited to see us, he seeks out our attention, he plays, he is filled with joy and he expresses love.
2011 was a year of blessings amidst heartache, confusion and guilt. God guided us through, giving us comfort and strength and lit the way for us to find the help we needed. 2012 has been a year of blessings as God has poured out his grace in the form of joy, hope and perseverance. He has granted us numerous victories and we are so thankful for the year we've had! What a difference a year makes!
What a difference a year makes: Part 1 - Autism Has Us
2011: AUTISM HAS US
When I think back on 2011, it is clouded with the ugly blur of autism. It consumed us last year. In fact, it chewed us up and spit us out! It ruined each part of our year by tainting it with guilt, dread, fear and heartbreak.
January: 11 months old and not a single word. I was beginning to worry about Maddox and to watch him more carefully.
February: Maddox turned 1 and I was sad that I had not been able to teach him to blow out his candle and he really hated the feeling of frosting on his fingers. Still no words.
March: Another ear infection and an Ages and Stages questionaire from the doctor. Too scared to fill it out. Still no words.
April: Back to the doctor for an ear infection. Feeling guilty because I still can't bring myself to finish filling out the form. Too many "NO" answers on the first page. Can't look the doctor in the eyes, hating the look of concern and pity I see there. And...still no words.
May: Another ear infection. Maybe he has hearing loss! (Feeling guilty that I was actually happy about this possibility!) That is the source of all of our problems! There is a reason he has no words! Threw away the damn questionnaire.
June: Passed the hearing test with flying colors, referred to a speech pathologist. Given a new questionnaire with a firm encouragment to fill it out. Speech pathologist was little help. She actually said she thought his problems were environmental. 2 working parents and an overbearing, attention-seeking older sister makes for a busy household where he is not getting enough attention. Spent the entire month in tears, wallowing in guilt and blaming myself for being such a horrible mother that my son was nearly a year behind in development.
July: Horrid speech pathologist gave me the number to CVRC and told me to call them for an evaluation. WITH NO EXPLANATION ABOUT WHO THEY WERE OR WHAT THEY DO! I came home and googled them and first saw the word AUTISM. My heart dropped down to my toes. Longest month ever waiting for our August 1st appointment. Finally filled out that awful questionnaire and fought the urge to wring the speech pathologist's neck.
August: Fears confirmed. He was not formally diagnosed but "was found to have significant risk factors for autism spectrum disorder" and qualified for early intervention services. More guilt for missing so many of the warning signs. Spent the rest of the month walking around in a daze and trying to find reputable information amidst all the crap and misconceptions out there. Thank God for some educated friends who pointed me in the right direction! Traveled to Laughlin, NV for a family reunion and spent the entire time in the bathroom singing to Maddox who would scream at the top of his lungs each time I tried to enter the room where the party was.
September: First evaluation from ACES to set up his ABA therapy. (Thankfully we didn't have to fight for services and were granted above and beyond what I had been prepared to demand.) Call from the Pediatric Developmental Department at Kaiser regarding Maddox's questionnaire and an offer for another evaluation and a formal diagnosis. Enrolled Mia in preschool, mostly to appease some of the guilt I was feeling for spending so much time and energy on her brother.
October: Trip to the Autism Spectrum Disorder Clinic in Rancho Cordova. Another evaluation and a formal diagnosis made it official. AUTISM HAS US. It has now officially taken over our lives and is running the show.
November: First ABA sessions. Trying to deal with the weirdness of having strangers in your house for 5-6 hours a day and listening to Maddox's cries of frustration as they try to coax him into learning. Spent Thanksgiving alone in a bedroom singing to Maddox who would scream anytime anyone else was around.
December: Hope! ABA is catching on, he's learning a few things, the weirdos in our house might just be a God-send, this might just work for us. Thank God this crappy year is over!!!
Read part 2 here
When I think back on 2011, it is clouded with the ugly blur of autism. It consumed us last year. In fact, it chewed us up and spit us out! It ruined each part of our year by tainting it with guilt, dread, fear and heartbreak.
January: 11 months old and not a single word. I was beginning to worry about Maddox and to watch him more carefully.
February: Maddox turned 1 and I was sad that I had not been able to teach him to blow out his candle and he really hated the feeling of frosting on his fingers. Still no words.
March: Another ear infection and an Ages and Stages questionaire from the doctor. Too scared to fill it out. Still no words.
April: Back to the doctor for an ear infection. Feeling guilty because I still can't bring myself to finish filling out the form. Too many "NO" answers on the first page. Can't look the doctor in the eyes, hating the look of concern and pity I see there. And...still no words.
May: Another ear infection. Maybe he has hearing loss! (Feeling guilty that I was actually happy about this possibility!) That is the source of all of our problems! There is a reason he has no words! Threw away the damn questionnaire.
June: Passed the hearing test with flying colors, referred to a speech pathologist. Given a new questionnaire with a firm encouragment to fill it out. Speech pathologist was little help. She actually said she thought his problems were environmental. 2 working parents and an overbearing, attention-seeking older sister makes for a busy household where he is not getting enough attention. Spent the entire month in tears, wallowing in guilt and blaming myself for being such a horrible mother that my son was nearly a year behind in development.
July: Horrid speech pathologist gave me the number to CVRC and told me to call them for an evaluation. WITH NO EXPLANATION ABOUT WHO THEY WERE OR WHAT THEY DO! I came home and googled them and first saw the word AUTISM. My heart dropped down to my toes. Longest month ever waiting for our August 1st appointment. Finally filled out that awful questionnaire and fought the urge to wring the speech pathologist's neck.
August: Fears confirmed. He was not formally diagnosed but "was found to have significant risk factors for autism spectrum disorder" and qualified for early intervention services. More guilt for missing so many of the warning signs. Spent the rest of the month walking around in a daze and trying to find reputable information amidst all the crap and misconceptions out there. Thank God for some educated friends who pointed me in the right direction! Traveled to Laughlin, NV for a family reunion and spent the entire time in the bathroom singing to Maddox who would scream at the top of his lungs each time I tried to enter the room where the party was.
September: First evaluation from ACES to set up his ABA therapy. (Thankfully we didn't have to fight for services and were granted above and beyond what I had been prepared to demand.) Call from the Pediatric Developmental Department at Kaiser regarding Maddox's questionnaire and an offer for another evaluation and a formal diagnosis. Enrolled Mia in preschool, mostly to appease some of the guilt I was feeling for spending so much time and energy on her brother.
October: Trip to the Autism Spectrum Disorder Clinic in Rancho Cordova. Another evaluation and a formal diagnosis made it official. AUTISM HAS US. It has now officially taken over our lives and is running the show.
November: First ABA sessions. Trying to deal with the weirdness of having strangers in your house for 5-6 hours a day and listening to Maddox's cries of frustration as they try to coax him into learning. Spent Thanksgiving alone in a bedroom singing to Maddox who would scream anytime anyone else was around.
December: Hope! ABA is catching on, he's learning a few things, the weirdos in our house might just be a God-send, this might just work for us. Thank God this crappy year is over!!!
Read part 2 here
Thursday, July 12, 2012
Hello again...
It has been far too long since I've blogged.
Not because I've had nothing to write about, but because I have not had a quiet moment to sit and write in months! Since my last post, 7 months ago, things around our house have changed dramatically. We are full swing into ABA therapy for Maddox, Mia has graduated from preschool and I have made the leap and become a work from home mommy.
As a full time working mom, I never doubted the busyness of stay at home moms but I never truly appreciated the full extent of the chaos that ensues on a day to day basis. I dreamed of a perfectly clean, organized house, dinner on the table every night just as Jason walked in the door and time to craft and create all the beautiful things I've been pinning on Pinterest. While I have managed to become a little more domestic, I was way off on what I thought life would be like.
Here are just a few things I've learned:
Not because I've had nothing to write about, but because I have not had a quiet moment to sit and write in months! Since my last post, 7 months ago, things around our house have changed dramatically. We are full swing into ABA therapy for Maddox, Mia has graduated from preschool and I have made the leap and become a work from home mommy.
As a full time working mom, I never doubted the busyness of stay at home moms but I never truly appreciated the full extent of the chaos that ensues on a day to day basis. I dreamed of a perfectly clean, organized house, dinner on the table every night just as Jason walked in the door and time to craft and create all the beautiful things I've been pinning on Pinterest. While I have managed to become a little more domestic, I was way off on what I thought life would be like.
Here are just a few things I've learned:
- The earlier I get up to try to squeeze in some exercise/reading/alone time, the earlier my son will get up
- Sitting down at the computer to work, causes my children to immediately need to be fed, changed or assisted with some dreadfully important task
- The instant I get on the phone, a child will be injured and will follow me around the house screaming as I frantically try to find a quiet corner to finish my conversation
- It is absolutely required that someone fall off some piece of furniture while jumping at least once a day
- Dawn dish soap will take pink sharpie off of just about anything (including pillows, curtains and walls) except skin
- Ranch dressing dropped on the floor can splatter everything within a 6 foot radius quite effectively
- Exactly 1 minute before my husband walks in the door, every toy in the house will suddenly appear in the livingroom
- From the time it takes me to walk from the bathroom to the linen closet and back, my children can dump most of the bath water onto the floor
- A dog unsupervised for 30 seconds can smear a dirty diaper right into the carpet
- I wouldn't give up a second of spending time with my crazy, wonderful kids
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