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
Tuesday, December 13, 2011
Calgon...take me away...
Life has been ...
what would be the right word?
hectic?
crazy?
chaotic?
overwhelming?
all of the above?
I'll start with a Maddox update.
He is doing fantastic! We started his in-home intervention program about a month ago. It's been great and he's been responding really well. He's learned 2 signs (more, all done) and has said 3 words (mama, ears, eye). Overall he just seems more aware of what's going on around him and it's easier to snap him out of his self-stimulation behaviors. We are all really excited about his progress.
On the flip side of that, it's also been a hard adjustment. Our program is 30 hours a week. That means teachers in and out 6 days a week, 5 hours a day. That's 6 different teachers and 3 different supervisors coming and going all day long. It's having strangers in your house, playing with your kid and teaching you how to be a different kind of parent. It's panicking over getting Maddox down for a nap immediately after his morning session so he will be cooperative for his afternoon session. It's trying to find something to keep Mia busy so she doesn't drive everyone crazy. It's hearing Maddox whine and complain and cry on the days he just gets tired of it all. It's worrying that I'm not there enough. It's guilt that I'm asking too much of my mom because she takes all of this on 4 days a week. It's getting up early on Saturday to make sure we're all awake and decently dressed before someone knocks on the door. It's constantly going and going and going...
I think this transition has really been hardest on Mia.
Because Maddox is so small, everything is done through play. They play with toys, blow bubbles, play outside, read books, sing songs. To Mia it looks like Maddox just got 9 new playmates and she wants to be in the middle of everything. Some of the teachers are really good at involving her for certain activities but she is such a distraction. She wants all of the attention on her and interrupts constantly so we try our best to keep her out of their way. It is so hard to keep telling her no all day. All of this has resulted in some acting out behaviors at home and at school. She is going waaayyyy overboard to get attention. She also hates to see Maddox upset and she gets really agitated when Maddox is protesting a lot and will burst into the room and do whatever it is they are trying to get him to do. We've tried explaining it to her by telling her that Maddox is having a hard time learning and we need help to teach him. He's too small to go to school like she does so his teachers have to come to our house and when they are there it is his school time just like when she goes to school it's her school time. She understands that but it doesn't stop her from being jealous and sneaking into the room with them the second we turn our backs.
On top of juggling all of this I still work 4 days a week. There has been some stressful things going on at work too which just adds to the list of things I have to worry about. And it's December. So our schedule has been even more packed with Christmas program rehearsals, parties, dinners, church events, making gifts and shopping.
And no, I haven't forgotten my poor husband. I try to make some time to take care of him too. Sometimes I even manage to get the house clean. And I even remember to pay bills once in a while.
Whew! No wonder I fall into bed exhausted at night.
I really need a vacation from my life!
But for now, I'll settle for a bubble bath and a locked bathroom door.
Thursday, November 3, 2011
A Tough Week for Everyone
This is turning into a tough week.
Try as I might, careful as I have been, my family is falling into sickness again. Jason was the first victim. He spent the past two days hibernating in the flannel sheets. Not a very fun way to spend a birthday.
This morning I woke up to the sound of Mia coughing and blowing her nose.
And much to my dismay, Maddox is sick too. Those of you close to me know how sad this makes me. Not only is he cranky, but he has to miss his class on Friday. When Maddox gets sick, it is no easy road. His poor little ears and sinuses get so congested and infected and it seems to take him twice as long to get over than everyone else. Everyone is cranky when they're sick, but imagine not being able to communicate and tell mama what you need or want. Maddox's frustration level was through the roof last night. I knew he wanted something, but what? He was only happy when I was singing but having a bit of a sore throat myself, I couldn't keep it up for too long. We finally settled on a nice, long, warm bath. Then the 4 cranky Lincicums went to bed.
It seems to be a theme this week. I read my 2 favorite bloggers most recent posts this morning and they ring all too familiar. Read them here: The Rabbit Hole & In the Cave.
Lord,
Today we all need an extra touch of Your healing and peace. As mothers our hearts break for our children in sickness and struggles. Help us to ease their sufferings and grant us patience and wisdom. Help us to remember that You love them even more than we do. Let their minds be calm and their bodies have rest.
Try as I might, careful as I have been, my family is falling into sickness again. Jason was the first victim. He spent the past two days hibernating in the flannel sheets. Not a very fun way to spend a birthday.
This morning I woke up to the sound of Mia coughing and blowing her nose.
And much to my dismay, Maddox is sick too. Those of you close to me know how sad this makes me. Not only is he cranky, but he has to miss his class on Friday. When Maddox gets sick, it is no easy road. His poor little ears and sinuses get so congested and infected and it seems to take him twice as long to get over than everyone else. Everyone is cranky when they're sick, but imagine not being able to communicate and tell mama what you need or want. Maddox's frustration level was through the roof last night. I knew he wanted something, but what? He was only happy when I was singing but having a bit of a sore throat myself, I couldn't keep it up for too long. We finally settled on a nice, long, warm bath. Then the 4 cranky Lincicums went to bed.
It seems to be a theme this week. I read my 2 favorite bloggers most recent posts this morning and they ring all too familiar. Read them here: The Rabbit Hole & In the Cave.
Lord,
Today we all need an extra touch of Your healing and peace. As mothers our hearts break for our children in sickness and struggles. Help us to ease their sufferings and grant us patience and wisdom. Help us to remember that You love them even more than we do. Let their minds be calm and their bodies have rest.
Tuesday, November 1, 2011
A Real Answer
Today I stopped myself in the midst of automatically saying, "I'm good."
The precious friend asking wanted a real answer to her question. "How are you REALLY?"
I took a few moments to think about that.
How am I really?
I feel at peace. I can breathe again. I know God is in control of all things and I trust Him. I know He has a purpose for all that He does and I trust that it is good.
I feel blessed. I have been utterly amazed by the outpouring of love and people rallying around my family, lifting us up in prayer and those who know when we need to get out for a cup of coffee or a game of football. I have seen God's provision and witnessed prayers being answered.
I feel loved. Not just by my husband and kids but by so many friends and family. My parents have blessed us so much with their support, their help and walking this road with us every step of the way. My entire family has been so supportive and encouraging.
I am so thankful...
To God for a never ending list of things.
To my husband for his love and for walking everyday of this life by my side.
To my children for stretching me so far beyond who I ever thought I could be.
To my parents for being the best parents in the world and for doing way too much for us.
To my church, sharing this journey in faith with each one of you is an honor.
To friends who love and laugh and make this life so much richer.
To family who send their love no matter the distance.
To teachers and therapists who really care.
So to answer that question...I REALLY AM GOOD!
The precious friend asking wanted a real answer to her question. "How are you REALLY?"
I took a few moments to think about that.
How am I really?
I feel at peace. I can breathe again. I know God is in control of all things and I trust Him. I know He has a purpose for all that He does and I trust that it is good.
I feel blessed. I have been utterly amazed by the outpouring of love and people rallying around my family, lifting us up in prayer and those who know when we need to get out for a cup of coffee or a game of football. I have seen God's provision and witnessed prayers being answered.
I feel loved. Not just by my husband and kids but by so many friends and family. My parents have blessed us so much with their support, their help and walking this road with us every step of the way. My entire family has been so supportive and encouraging.
I am so thankful...
To God for a never ending list of things.
To my husband for his love and for walking everyday of this life by my side.
To my children for stretching me so far beyond who I ever thought I could be.
To my parents for being the best parents in the world and for doing way too much for us.
To my church, sharing this journey in faith with each one of you is an honor.
To friends who love and laugh and make this life so much richer.
To family who send their love no matter the distance.
To teachers and therapists who really care.
So to answer that question...I REALLY AM GOOD!
Tuesday, October 25, 2011
Warning Labels
Mia's preschool just started a program called Raising a Reader. It's neat. It's like the library coming to you. Every week the kids get a book bag with 4 books. They keep them for a week, take them back and exchange it for a new bag with new books. Great program.
For the past year or so, Mia has been getting extremely emotional with movies and stories, often with good reason. She cries when Mufasa dies in Lion King. She cries when Mr. Frederickson's house floats away in UP. She cries when Tinkerbell breaks the moonstone. At my mom's house a few days ago, she dropped a marble in the pool and was hysterical until her daddy fished it out with the pool net. Needless to say, she is becoming very sensitive.
Well this week's Raising a Reader bag should have a warning label, "CAUTION: MAY CAUSE UNCONTROLLABLE SOBBING!"
The first book, Giving Thanks: A Native American Good Morning Message was just fine.
The second one, My Lucky Day, was getting a little risky for tears. It's about a wolf trying to eat a pig. The end of the story was pretty cute but Mia was very concerned about the pig's welfare and was a little nervous throughout the story. (This is probably a good time to mention that her favorite toy is a stuffed pig)
The third book, The Snowman, was great until the very last page...where he melts! I should have seen that one coming. Poor Mia was fighting back tears as she asked, "he can build another one, right?" I assured her he could and quickly suggested moving on to the 4th book to get her mind off the sad story.
The last book, Mama, was the worst of all! It's a true story about a baby hippo named Owen who loses his mother in a Tsunami. He is rescued and taken to a wildlife sanctuary where he adopts a tortoise as his mother. Mia was beside herself. She cried and cried and was completely inconsolable. I looked up the real Owen on the internet so she could see pictures of him and see how happy he is with his turtle mama. She just kept crying and saying that she she would be so sad to lose me and she didn't want a new mama. I could not detach her from my side. She cried the rest of the evening and came and got into bed with me twice in the middle of the night!
I may need to preview the books from now on!
For the past year or so, Mia has been getting extremely emotional with movies and stories, often with good reason. She cries when Mufasa dies in Lion King. She cries when Mr. Frederickson's house floats away in UP. She cries when Tinkerbell breaks the moonstone. At my mom's house a few days ago, she dropped a marble in the pool and was hysterical until her daddy fished it out with the pool net. Needless to say, she is becoming very sensitive.
Well this week's Raising a Reader bag should have a warning label, "CAUTION: MAY CAUSE UNCONTROLLABLE SOBBING!"
The first book, Giving Thanks: A Native American Good Morning Message was just fine.
The second one, My Lucky Day, was getting a little risky for tears. It's about a wolf trying to eat a pig. The end of the story was pretty cute but Mia was very concerned about the pig's welfare and was a little nervous throughout the story. (This is probably a good time to mention that her favorite toy is a stuffed pig)
The third book, The Snowman, was great until the very last page...where he melts! I should have seen that one coming. Poor Mia was fighting back tears as she asked, "he can build another one, right?" I assured her he could and quickly suggested moving on to the 4th book to get her mind off the sad story.
The last book, Mama, was the worst of all! It's a true story about a baby hippo named Owen who loses his mother in a Tsunami. He is rescued and taken to a wildlife sanctuary where he adopts a tortoise as his mother. Mia was beside herself. She cried and cried and was completely inconsolable. I looked up the real Owen on the internet so she could see pictures of him and see how happy he is with his turtle mama. She just kept crying and saying that she she would be so sad to lose me and she didn't want a new mama. I could not detach her from my side. She cried the rest of the evening and came and got into bed with me twice in the middle of the night!
I may need to preview the books from now on!
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