Today is April 30th, the last day of Autism Awareness Month. It's the end of my beginning.
It's allowed my to talk openly about my life-- all of it. Because when I can't talk about one thing in my life, I can't talk about anything. My boy is very much my life.
Fittingly, we had our placement meeting today and it went very well. I went in with the attitude that the teachers and administrators were there to help me, not to keep the best from me or my child. That was the best advice I got early on. Be informed, be an advocate, but be part of the team. I have more to share about the meeting, but I've got to let in all sink in first. We will be at the school I'd anticipated, but I got a good feel for the teacher and the classroom. I've excited, energized, and hopeful for the future. I felt heard and understood in the meeting, and yup, I cried a bit, but that's just me. As I told the team, the onus of Jeremiah's potential is on me (well, on God through me, but you know, we only had an hour). I never thought I'd be sitting in a special education meeting for my child. Ever. But here I am, and that's okay. Whatever it takes. Wherever the path leads me.
I know. Jeremiah's future is going to be amazing.
I've been thinking about awareness and acceptance and what that means. And how it allows us to love our neighbor. Some in the autism community feel like a blue bracelet or light isn't going to help their child. And on face value, it won't. But prayers will. And understanding will. And friendship will. And monies raised in scholarships will. And research will. And humility and gratefulness will.
Sure, I'm aware of autism. As one blogger said, if I were any more aware of it, I'd be dead.
This month and this series of blogs has been about me accepting it. And in turn, I have accepted so much more.
I've accepted love. New direction. New dreams. Hope. Laughter.
I know what autism means to me, and the outlook is not what my doctor said, or the textbooks outline, or what the educational prognosis might say. It's a hands-on, first hand account of God's power molding my son day by day.
Thank you for loving me as yourself. Thanks for being my neighbor.
James 2:7-8 (NIV) If you really keep the royal law found in Scripture, "Love your neighbor as yourself," you are doing right.
Tuesday, April 30, 2013
Sunday, April 28, 2013
Working in the Waiting
I chose an easy, practical verse to learn this month: Wait on the Lord; be strong, and take heart, and wait on the Lord. (Psalm 27:14) So, what should today's sermon topic address? Waiting on God! To wait means to hope in Hebrew. The word picture is of a rope being twisted, becoming stronger. I've definitely felt twisted and pulled a lot over these recent years! And God's Word has come through. When I was deep in anxiety (another post for another time), it took me step by step back to peace. I emerged much stronger, and knew without a doubt that God works on my behalf. Another point the pastor made was that in our waiting, we should be poised, ready to spring into action when we sense God moving us to a new course. So, here I am, waiting, working, and expecting God to work. He is working in my waiting. That's the blessing of trials. To be included in His work. Y'all, I plain love Jesus and I don't care if that makes me a corny cliche to those who are to cool to need. I need. I need Jesus.
Tuesday, April 23, 2013
Standing in the Need
Some really cool stuff is happening in my life! I feel like some tangible blessings have fallen in my lap, not because I asked for them, but because the Lord just delighting in me. I hope that doesn't sound 'braggy', but I'm feeling very loved by God! He's opening my eyes more to how he is working, probably because I just need Him. I need divine power, insight, direction, strength, everything.
With all this in mind, I'm gonna go ahead and ask for a few things of Him, and a couple I'd like to share with you. I've had the privilege of asking others to pray with me about Jeremiah and our family, and in turn, felt the need to pray for those encouragers in kind.
So, would you pray for me?
April 30th is J's placement meeting for schooling next year. It should be a relatively low-key meeting. His teacher already told me the school she is recommending and the best fit in terms of a teacher. Our local school does not have Special Ed. Kindergarten, so J will be going to another school. Though it's a bit of a bummer to not be at the local school, the options are excellent and our county has high marks for their elementary schools. Would you pray that:
- We select the best school for Jeremiah.
- His teacher will have a true understanding of autism, and a passion for teaching.
- For our summer, that I will use the time to "bank" many enriching engagements with Jeremiah.
- Perhaps, down the road, as we gain confidence with our RDI program and the progress we are seeing, that I could even step in and take over J's schooling for a time to accelerate him. This is a new dream that scares and excites me, but I know NO ONE will be as committed as me to see my son grow. I would never have thought it possible or even wanted to do this but for J's needs. I still have lots to think about, and surely don't want to do something to satisfy my own need for praise or approval. And I don't want to not do it because I'm worried what others might think. I want to do what the Lord wants, what's best for J, what's best for the family and I pray all those things line up!
- I will make and cherish special times with Sarah and Rachel separately and together.
- I will just lap up every sweet moment with Rachel and not worry a bit about her development. She's in that "life rocks!" phase of excitement and I'm like "she's waving her arms in the bouncer... is that a stim or just happiness?" I don't want to miss anything or filter a moment through worry.
To be reckoned by God--astounding!
Friday, April 19, 2013
Our Autism Story In One Place
On April 1st, I sent my experience with autism out into the scary world of social media and to my surprise, was met with grace and understanding. My hope is that another parent like me will find these posts and be encouraged.
Autism Posts:
I'm Ready (Signs of Autism and Diagnosis)
Meet Jeremiah (My Boy, Just As He Is)
The Climb (Our Therapy Approach)
Now (The Bittersweet Milestone of Turning 5)
Resources and Advice (What I'd Want To Tell You As a New Autism Parent or Loved One)
Autism Posts:
I'm Ready (Signs of Autism and Diagnosis)
Meet Jeremiah (My Boy, Just As He Is)
The Climb (Our Therapy Approach)
Now (The Bittersweet Milestone of Turning 5)
Resources and Advice (What I'd Want To Tell You As a New Autism Parent or Loved One)
Have to Share: Ages & Stages Questionnaire
I was looking at the Easter Seals page for information and ran across this excellent resource for any parent curious about their child's development. If you have true concerns about your child's development, this is free and confidential and something that you could bring to a doctor or professional to help in the screening process.
https://asqonline.com/family/1ac805/questionnaire
Also, this blog post on the Easter Seals site "Five Reasons Not to Freak Out" is a good read for newly diagnosed parents.
Have Friday, y'all!
Monday, April 15, 2013
Me and My Bathrobe: Thoughts on Being a Woman
After a rare nap yesterday, I had trouble falling asleep. For some reason, I began to ruminate on my bathrobe.
I've mentioned it before. It's like my second skin. My security blanket. The next best thing to actually being in bed.
I seem to hoard robes. I have four hanging in my bathroom and a few pretty ones that rarely leave my closet--those feminine, satin ones I received as a bride-to-be.
Know the robe, know the woman. Probably should make a Pinterest image out of that one. 'Cause I can't stitch it on a pillow.
As a little girl, I had a few robes given to me over the years for Christmas. I really didn't know what to do with them. The tv shows I watched showed adults always throwing one on in a panic to answer the door in the middle of the night. Since I had no reason to do this, the robes went unused.
The first time I needed to use one was to wear as I sprinted down the hall of my girl's dorm as a freshman. Communal showers, people. That's real living. I had my shower caddy stocked with Pantene and Crest toothpaste, my Barbie pink sandals (a shower necessity) and my white terry cloth robe. I still have that one. I've long lost the belt, but my terry cloth robe still proudly hangs beside my mercifully private shower.
That robe reminds me of my time as an undergraduate living on campus at the University of Florida. My biggest worries were making to my 10 o'clock class and trying to write a 10 page essay on no sleep. Really gut wrenching stuff like that. I made lifelong friends and learned a few helpful things both in and out of the classroom. I was still basically clueless about life, but I stayed out of trouble thanks to Campus Crusade (read: God), graduated, and had a great time. That's ages 18-21 in a nutshell. As Britney says, I was "not a girl...not yet a woman."
Sorry for all the teeny bopper quotes. Such is my brain. Sometimes Britney and Miley stumble on some true stuff.
My second grown up robe is a to-the-floor creme satin robe lined with fleece. It's warm and pretty. My sister noted that it's a nod to Katherine Hepburn in The Philadelphia Story. (Go watch it if you've missed it. Classic witty repartee). That robe took me through my young married, before-babies years to the 1am & 4am graveyard shift of newbornhood with Jeremiah. The pocket's torn, probably from a bottle being stuffed inside, and it can be obnoxious to climb the stairs as it drags. But it's special to me. It marks my passage from girl to young woman to woman.
My third and favorite robe enters here. I received it when Sarah was born. It took the lionshare of hard work-- two babies under age 2! And now, three under age 5. It has literally grown with me and my stomach over the last few years. While I have an ever-vascilating pant size (as my closet will attest), my pink robe always fits. My most recent robe is a knee length number, great for spring and summer. Sarah likes to use the belt as a tug-of-war/tie 'em up/jump rope.
At its best, for me, being a woman means a growing sense of community with fellow believers. Women I admire and respect, even and especially if we do things differently. Isn't that a nice change? As girls, we get so bent out of shape if we aren't j-u-s-t like our best friend or the prettiest girl in class. And it turns out that the person we put on a pedestal was just as insecure as we were.
I don't think marriage or children or even age make one a woman. Biblical womanhood, as I understand it, is a reflection of God's character-- his tenderness, care, and compassion. Again, while neither marital status nor motherhood define womanhood, those experiences have certainly provided opportunities for me to experience God's heart.
At this point in my life, I'm comfortable enough (most days) in my own skin to compliment myself when I've made an effort to dress up and look nice. I'm okay to introduce myself to a stranger and try to make them feel welcome. I don't have to be the "it" girl, the one who has it all figured out, scheduled, color coordinated, and cross referenced. Though if she exists, I think we'd be friends. I think that's growing up. Women in community.
A community made even better if your friends stay in their robes til 10 a.m. Women who pray for you, unprompted, who text and call, who give hugs when you start snot-crying in public. Secure women. Flawed. Genuine. I'm so glad to wear this new garment.
I've mentioned it before. It's like my second skin. My security blanket. The next best thing to actually being in bed.
I seem to hoard robes. I have four hanging in my bathroom and a few pretty ones that rarely leave my closet--those feminine, satin ones I received as a bride-to-be.
Know the robe, know the woman. Probably should make a Pinterest image out of that one. 'Cause I can't stitch it on a pillow.
As a little girl, I had a few robes given to me over the years for Christmas. I really didn't know what to do with them. The tv shows I watched showed adults always throwing one on in a panic to answer the door in the middle of the night. Since I had no reason to do this, the robes went unused.
The first time I needed to use one was to wear as I sprinted down the hall of my girl's dorm as a freshman. Communal showers, people. That's real living. I had my shower caddy stocked with Pantene and Crest toothpaste, my Barbie pink sandals (a shower necessity) and my white terry cloth robe. I still have that one. I've long lost the belt, but my terry cloth robe still proudly hangs beside my mercifully private shower.
That robe reminds me of my time as an undergraduate living on campus at the University of Florida. My biggest worries were making to my 10 o'clock class and trying to write a 10 page essay on no sleep. Really gut wrenching stuff like that. I made lifelong friends and learned a few helpful things both in and out of the classroom. I was still basically clueless about life, but I stayed out of trouble thanks to Campus Crusade (read: God), graduated, and had a great time. That's ages 18-21 in a nutshell. As Britney says, I was "not a girl...not yet a woman."
Sorry for all the teeny bopper quotes. Such is my brain. Sometimes Britney and Miley stumble on some true stuff.
My second grown up robe is a to-the-floor creme satin robe lined with fleece. It's warm and pretty. My sister noted that it's a nod to Katherine Hepburn in The Philadelphia Story. (Go watch it if you've missed it. Classic witty repartee). That robe took me through my young married, before-babies years to the 1am & 4am graveyard shift of newbornhood with Jeremiah. The pocket's torn, probably from a bottle being stuffed inside, and it can be obnoxious to climb the stairs as it drags. But it's special to me. It marks my passage from girl to young woman to woman.
My third and favorite robe enters here. I received it when Sarah was born. It took the lionshare of hard work-- two babies under age 2! And now, three under age 5. It has literally grown with me and my stomach over the last few years. While I have an ever-vascilating pant size (as my closet will attest), my pink robe always fits. My most recent robe is a knee length number, great for spring and summer. Sarah likes to use the belt as a tug-of-war/tie 'em up/jump rope.
At its best, for me, being a woman means a growing sense of community with fellow believers. Women I admire and respect, even and especially if we do things differently. Isn't that a nice change? As girls, we get so bent out of shape if we aren't j-u-s-t like our best friend or the prettiest girl in class. And it turns out that the person we put on a pedestal was just as insecure as we were.
I don't think marriage or children or even age make one a woman. Biblical womanhood, as I understand it, is a reflection of God's character-- his tenderness, care, and compassion. Again, while neither marital status nor motherhood define womanhood, those experiences have certainly provided opportunities for me to experience God's heart.
At this point in my life, I'm comfortable enough (most days) in my own skin to compliment myself when I've made an effort to dress up and look nice. I'm okay to introduce myself to a stranger and try to make them feel welcome. I don't have to be the "it" girl, the one who has it all figured out, scheduled, color coordinated, and cross referenced. Though if she exists, I think we'd be friends. I think that's growing up. Women in community.
A community made even better if your friends stay in their robes til 10 a.m. Women who pray for you, unprompted, who text and call, who give hugs when you start snot-crying in public. Secure women. Flawed. Genuine. I'm so glad to wear this new garment.
Thursday, April 4, 2013
Resources and Advice
It's been quite a week! I doff my hat (or twirl the belt of my pink, fuzzy robe more like) to professional writers who do this daily. It's so rewarding to hear feedback and make connections, but it's also mentally and emotionally draining to dig deep. I need to finish up so I can watch The Office and eat Reese's peanut butter eggs.
A few friends have reached out and shared that they will be passing along my story to help a friend or family member facing a possible autism diagnosis. If that happens to be you, It's gonna be okay. Really. I know even reading this story or resources about autism can just twist you into knots. You're reading about possible therapies, diets, bio-medical approaches, and well, some stuff that just seems far out. And you are willing to try anything, everything, all at once. It's gonna be okay. I feel that way too, then I talk it out, and I'm okay for awhile, and then some article or firestorm in the autism community will get me all worked up again. The sad thing is that many parents with kids like ours are very, very hurt and angry. And they channel that anger to fight for what they think is best for their children--which I get. But anger will slowly rob you of joy. When you find yourself feeling angry or confused, don't go to the Internet! It will not make you feel better. Talk to your spouse, make a lunch date with a friend, go do something that makes you happy.
Above all, follow your gut and get your child screened. Autism screening can be done as early as 18 months. It will not hurt to be cautious. If your primary pediatrician does not take your concerns seriously or takes a "wait and see" approach, get a second opinion. It often takes several months to get in with a specialist, so don't wait.
I waited for Jeremiah to "catch up". When he was 2 1/2, I filled out a screening device myself and hemmed and hawed over it. I was not an expert. I only had one child as a frame of reference. If you are researching autism in concern about your child, call the doctor tomorrow. I know it is so hard to even admit you are worried, but take it a step at a time.
If you are newly diagnosed, prioritize your next steps. You cannot get a plan in place in a week. For us, it was schooling, funding/insurance issues, speech and occupational therapy, then finding an specialized therapy for autism. At age 3, we were referred to a developmental pediatrician and from that appointment to our diagnosis was 6 months. From diagnosis to a fully realized plan took 9 more months. You will get to a place where you feel like you've regain a measure of control. Be kind to yourself and your spouse. Let others be kind to you. They are not judging you or being fake. If they are offering help, they are good folk and really care.
If you are a family member or friend of a family like ours, I'd like you to know that we see ourselves just like you see yourself. We are just a family. We have special needs, true. Our child has special needs. Words like normal sound pejorative to our ears. Neurotypical or typical is how we refer to our children that do not have a particular diagnosis. But they are all our kids. Period, The End. Don't get hung up on labels. Everyone's situation is their normal. We all just want to belong.
When we talk together, please ask out our child with special needs. Just how they're doing. We love to talk about them. We don't get to talk about them as much as we'd like with our friends because we often don't have much to contribute to the discussion when our child is not at the same place developmentally as their peers. So please ask when it's appropriate. And then other times, we need a break. We desperately need to talk aboutmindless enriching programs such as The Bachelor or our muffin top and how best to conceal it.
Before I close, I want to mention my wonderful husband, Alex, and our amazing family, especially our parents-- Nana & Papa, Grandma & Grandpa to Jay. I wrote this for me, but I mainly wrote this for them. This is everything I wanted to explain and didn't know how. Thanks for being patient. Thanks for loving Jeremiah and never, ever acting like he was in any way less than the blessing he was when he came to us on May 29th.
I knew I was totally ruined in love for that little boy the moment I felt a silkiness run down my arm as I had him on my shoulder in the hospital room. I was expecting to see spit-up. Instead, I saw little hand had fallen and found a resting spot. That's the image I'm gonna remember when he and I are out-of-sorts. And that little toddler trying to feed me yogurt. The little boy carrying his own diapers in a tiny backpack to baby preschool. A big boy riding the bus, always ready for Chick-Fil-A and the next outing. It's the same little boy. And autism has nothing to do with it. Raising him and our daughters is the privilege of our lives.
He's just our boy.
Faith based web resources:
Chosen Families (Hidden Disabilities)
Not-Alone (Special Needs Parenting)
Blogs: While very diverse in their viewpoints, all are respectful and encouraging
Autism Wonderland (Mom with elementary aged son with autism)
Flappiness Is (Mom with preschool aged son with autism)
Mostly True Stuff (Funny blog; Mom with a son with autism and daughter with Down's Syndrome)
Laura Shumaker (Journalist and mom with adult son on the spectrum; real and optimistic)
Books I Recommend:
Ten Things Every Child With Autism Wish You Knew by Eileen Notbohm (Autism mom)
Finding Your Child's Way on the Autism Spectrum by Dr. Laura Hendrickson (Faith based; Autism mom and psychologist)
The RDI Book: Forging New Pathways for Autism, Asperger's and PDD with the Relationship Develoment Intervention Program by Dr. Steven Gutstein
Middle Georgia Resources:
Developing Minds
Central Georgia Autism, LTD.
Marcus Autism Center (Atlanta)
A few friends have reached out and shared that they will be passing along my story to help a friend or family member facing a possible autism diagnosis. If that happens to be you, It's gonna be okay. Really. I know even reading this story or resources about autism can just twist you into knots. You're reading about possible therapies, diets, bio-medical approaches, and well, some stuff that just seems far out. And you are willing to try anything, everything, all at once. It's gonna be okay. I feel that way too, then I talk it out, and I'm okay for awhile, and then some article or firestorm in the autism community will get me all worked up again. The sad thing is that many parents with kids like ours are very, very hurt and angry. And they channel that anger to fight for what they think is best for their children--which I get. But anger will slowly rob you of joy. When you find yourself feeling angry or confused, don't go to the Internet! It will not make you feel better. Talk to your spouse, make a lunch date with a friend, go do something that makes you happy.
Above all, follow your gut and get your child screened. Autism screening can be done as early as 18 months. It will not hurt to be cautious. If your primary pediatrician does not take your concerns seriously or takes a "wait and see" approach, get a second opinion. It often takes several months to get in with a specialist, so don't wait.
I waited for Jeremiah to "catch up". When he was 2 1/2, I filled out a screening device myself and hemmed and hawed over it. I was not an expert. I only had one child as a frame of reference. If you are researching autism in concern about your child, call the doctor tomorrow. I know it is so hard to even admit you are worried, but take it a step at a time.
If you are newly diagnosed, prioritize your next steps. You cannot get a plan in place in a week. For us, it was schooling, funding/insurance issues, speech and occupational therapy, then finding an specialized therapy for autism. At age 3, we were referred to a developmental pediatrician and from that appointment to our diagnosis was 6 months. From diagnosis to a fully realized plan took 9 more months. You will get to a place where you feel like you've regain a measure of control. Be kind to yourself and your spouse. Let others be kind to you. They are not judging you or being fake. If they are offering help, they are good folk and really care.
If you are a family member or friend of a family like ours, I'd like you to know that we see ourselves just like you see yourself. We are just a family. We have special needs, true. Our child has special needs. Words like normal sound pejorative to our ears. Neurotypical or typical is how we refer to our children that do not have a particular diagnosis. But they are all our kids. Period, The End. Don't get hung up on labels. Everyone's situation is their normal. We all just want to belong.
When we talk together, please ask out our child with special needs. Just how they're doing. We love to talk about them. We don't get to talk about them as much as we'd like with our friends because we often don't have much to contribute to the discussion when our child is not at the same place developmentally as their peers. So please ask when it's appropriate. And then other times, we need a break. We desperately need to talk about
Before I close, I want to mention my wonderful husband, Alex, and our amazing family, especially our parents-- Nana & Papa, Grandma & Grandpa to Jay. I wrote this for me, but I mainly wrote this for them. This is everything I wanted to explain and didn't know how. Thanks for being patient. Thanks for loving Jeremiah and never, ever acting like he was in any way less than the blessing he was when he came to us on May 29th.
I knew I was totally ruined in love for that little boy the moment I felt a silkiness run down my arm as I had him on my shoulder in the hospital room. I was expecting to see spit-up. Instead, I saw little hand had fallen and found a resting spot. That's the image I'm gonna remember when he and I are out-of-sorts. And that little toddler trying to feed me yogurt. The little boy carrying his own diapers in a tiny backpack to baby preschool. A big boy riding the bus, always ready for Chick-Fil-A and the next outing. It's the same little boy. And autism has nothing to do with it. Raising him and our daughters is the privilege of our lives.
He's just our boy.
Chosen Families (Hidden Disabilities)
Not-Alone (Special Needs Parenting)
Blogs: While very diverse in their viewpoints, all are respectful and encouraging
Autism Wonderland (Mom with elementary aged son with autism)
Flappiness Is (Mom with preschool aged son with autism)
Mostly True Stuff (Funny blog; Mom with a son with autism and daughter with Down's Syndrome)
Laura Shumaker (Journalist and mom with adult son on the spectrum; real and optimistic)
Singing Through the Rain (Faith Based blog; Mom with preschool aged son with autism )
Books I Recommend:
Ten Things Every Child With Autism Wish You Knew by Eileen Notbohm (Autism mom)
Finding Your Child's Way on the Autism Spectrum by Dr. Laura Hendrickson (Faith based; Autism mom and psychologist)
The RDI Book: Forging New Pathways for Autism, Asperger's and PDD with the Relationship Develoment Intervention Program by Dr. Steven Gutstein
Middle Georgia Resources:
Developing Minds
Central Georgia Autism, LTD.
Marcus Autism Center (Atlanta)
Now.
Here we are. Inching up on J's 5th birthday. The number I've been quietly dreading. And while I am so grateful to have him turn another year older, it's a milestone, and the expectations of a milestone hurt.
Few facts from hours logged in a College of Ed. lecture hall stand out for me. One is that birth to five is the greatest language learning stage of life. Those first five years are the much referenced "window" of early intervention. Before RDI, I felt five coming down on us much like a guillotine. When the calendar turns to late May, that was it. Window closed.
Guess what: The brain can do amazing things! It can be trained to work in new ways. New neural pathways can be formed. Five really isn't the "developmental death sentence" I'd feared.
Five years old: Kindergarden looms large. Superhero underpants and capes, tents out back, yucky girls, and a long list of childhood accomplishments.
For us, five doesn't look that way. In my honest, unfiltered moments, I mourn those magic moments of early boyhood that we all missed. Our years were sweet and wonderful. They were just different. And I'd be lying if I said it didn't hurt or didn't matter.
Whew. Thanks for letting me say that. This "acceptance" thing don't come easy.
I envy the mothers whose only worry for the next school year is what teacher they'll get. And only paperwork is the postcard in the mail.
And those that can plan such whimsical activities and unique opportunities without carefully made contingency plans.
We have fun-- trips, adventures, surprises. It's just never seemingly effortless. I know... Nothing ever is.
This year, however we celebrate, it will be about us. About THIS five year old boy and what he'd enjoy. Not what never was, not what might be, but this moment. Now.
I love my son-- now. Just as he is. Now. Even when I don't feel it. I love him.
No matter how he performs.
I'm taking a crash course in unconditional love. And one day, I'll ask him to forgive where I just totally screwed up.
Even though I know I already am forgiven.
That's God's love.
One more "All About Jay" day... Tomorrow, I'll be discussing what I would go back and tell myself if I could and how you can encourage a family like ours dealing with a hidden disability such as autism.
Few facts from hours logged in a College of Ed. lecture hall stand out for me. One is that birth to five is the greatest language learning stage of life. Those first five years are the much referenced "window" of early intervention. Before RDI, I felt five coming down on us much like a guillotine. When the calendar turns to late May, that was it. Window closed.
Guess what: The brain can do amazing things! It can be trained to work in new ways. New neural pathways can be formed. Five really isn't the "developmental death sentence" I'd feared.
Five years old: Kindergarden looms large. Superhero underpants and capes, tents out back, yucky girls, and a long list of childhood accomplishments.
For us, five doesn't look that way. In my honest, unfiltered moments, I mourn those magic moments of early boyhood that we all missed. Our years were sweet and wonderful. They were just different. And I'd be lying if I said it didn't hurt or didn't matter.
Whew. Thanks for letting me say that. This "acceptance" thing don't come easy.
I envy the mothers whose only worry for the next school year is what teacher they'll get. And only paperwork is the postcard in the mail.
And those that can plan such whimsical activities and unique opportunities without carefully made contingency plans.
We have fun-- trips, adventures, surprises. It's just never seemingly effortless. I know... Nothing ever is.
This year, however we celebrate, it will be about us. About THIS five year old boy and what he'd enjoy. Not what never was, not what might be, but this moment. Now.
I love my son-- now. Just as he is. Now. Even when I don't feel it. I love him.
No matter how he performs.
I'm taking a crash course in unconditional love. And one day, I'll ask him to forgive where I just totally screwed up.
Even though I know I already am forgiven.
That's God's love.
*
Wednesday, April 3, 2013
The Climb.
In August 2012, we sit down for a consultation with the RDI group, Developing Minds. I go in with a defensive posture, ready to march out the door if I even smell a hint of fault-finding or blame. The last thing I need is to wear a yoke of shame for "causing" my son to have this disorder. I have gone through the "what ifs" over and over in my mind, everything I did to prepare for his birth, all my life choices, and return over and over to God's absolute sovereignty. I choose to believe it is for God's good purpose and ultimate glory that my son has autism. Though the eyes of faith in a loving Father, it is for my son's ultimate good. My feelings can get stepped on by my theology. Just a few weeks ago I broke down in our consultation time, admitting, "Maybe he won't catch up. Maybe it would be better if I just accepted that this is all there is. Maybe that would be more loving." I don't think that's true; I'm just saying that I don't know the future.
That's the life of faith: Hope in things unseen. And hope can feel cruel. It hurts to see my child struggle, but it will be worth seeing him SOAR. Jeremiah Christopher means "God will uplift" and "Christ bearer". How appropriate and how like God to make his name like a promise to me.
This autism will not define my son. It will inform his life, for a time very heavily, but it will not always. It will be redeemed-- however that looks to the eyes of society-- and I eagerly await what's in store.
What convinces me that RDI is the correct treatment for us is their view of the deficits of autism. Namely, the idea of dynamic and static intelligence. Static intelligence is unchanging knowledge and patterns, such as mathematics. This is one reason that individuals with autism often show an aptitude or even prodigy abilities in a very specific, limited field of study. It is predictable, unchanging information. Our Jeremiah does well with many academic tasks; he has a good memory and excels in numbers.
The tenets of RDI are that individuals with autism fail to use their parents as guides to understanding the world. From birth, humans look to their parents to learn language, limits, social interaction, how-to-be. Children are junior apprentices of their parents, naturally learning and taking advantage of challenging tasks that are presented in a developmentally appropriate fashion. What RDI seeks to do is uncover this natural, intuitive learning process and repair it. Repair the learning process, strengthen the bond. Not create it. The bond is (my words) God given.
The first step is to establish what they term the guiding relationship. Through intentional and mindful engagements, parents seek to take away performance demands (such as an over-emphasis in verbal language) and rely on facial expressions, wait time, and analysis of taped engagements to improve these times spent together. Since children with autism have processing delays, the more language they are given, the more overloaded they become. The natural inclination a parent has when their child fails to perform or respond is to repeat the command. It's a vicious cycle of information overload.
What seals the deal for me is the woman sitting in on the meeting. Her daughter is on the spectrum, and has seen so much progress that she is transitioning from a respected field to join this team.
What's neat is she becomes our consultant, the person I probably talk to more than almost anyone about our life. In essence, my professional autism mentor/therapist/cheerleader. She sees my son.
We also start J doing speech therapy with this group, and get paired with a godsend of a therapist. Another person who understands and even enjoys my son-- as he is-- period. All the ladies treat him this way. They don't get flustered if he squeals, or runs away, or otherwise acts inappropriately.
What I am calling defiance, they are calling something else.
Autism. He is simply being.
And I couldn't see it.
RDI? Sold.
We begin.
We have been learning and working on RDI principles for almost 6 months, and it's been very challenging to reexamine our beliefs on parenting and to see another point of view. Since we suspected J had autism, I've been afraid that I've totally screwed up and that I'm just one of those people that screw up and I'll never get it right with my son.
One thing RDI seeks to do is help bring the parent-child dynamic to mutually beneficial relationship. Both give and take. What I mean by this is that J will one day be able (please, please Lord) to share his feelings and experiences with me in a way I understand because we will speak the same language--verbally and non-verbally. Right now, as Dr. Gutstein described it, our dynamic at times is like a blind captain trying to lead a deaf crew.
Lots of input, lots of energy, lots of frustration.
A lot has happened in the fifteen months since J's diagnosis: the mad dash for services, pregnancy and a new baby, the typical chaos of a two year old girl, and the general busyness of life. When we started this program, our focus became laser-like: engaging Jeremiah and trying to see him in a new light. This year of his life has been very hard. I told one friend that it was as if all the deposits of loving moments between me and Jeremiah had been exhausted and my tank was empty. Not much was going in, and I had no more reserves at that particular moment.
Holidays are always a challenge with young children, and especially for kids like Jeremiah. The visitors and excitement and activity is wonderful, but when it's time to go back to routine in January, the piper must be paid. For at least 6 weeks, my newborn slept like a rock and my 4 1/2 year old reverted to waking up two to three times a night-- coming to full alertness, ready to go. Midnight, up. Mom reassures at the door. Between two and three, blabbing about whatever was last in his head and ready to be up. This is where I must decide (if I'm even cognizant) if I will wait it out from outside his gated door as he S-C-R-E-A-M-S or go in, pull up the covers, and try to soothe him. Either option could take an hour. These never-ending days just exhaust me, and as much as I know it's useless, I have to admit that sometimes I holler and spank and generally lose my mind after such a battle. It really feels like warfare. And it's hard to determine where his issues end and his defiance begins-- irregular sleep is part of the deal for many kids with autism.
And when your husband's cranky and you're cranky, and your kids are just being kids, and jobs need to be worked and appointments need to be kept and you're just trying to survive another day and not eat a whole gallon of ice cream, you start to despair for a time.
It felt like every single thing he did was to annoy me. One day last week (after a low weekend), Jeremiah started making the "h" sound at me. Hhhhhh. Hhhhhh. He knows I hate this. I've reinforced that this is an excellent way to get negative attention from me. And in the moment, when I'm trying so hard to smile and pause and wait for him to attend my direction and choose to play with me, he hhhhhs. And to my burnt-out ears and frazzled nerves, it feels like he is cursing me. I've cried more these last 30 days than I have the whole first year of his diagnosis. Because it cannot be overlooked or wished away any longer.
About a month ago, we had a tough conversation with our consultant about our progress. Basically, we needed to change our perception of J's behaviors or we would stay stuck. In essence, we were the ones able to change.
This I'll never forget: "We can't expect him to come to us. We have to go to him."
That's the story of the Prodigal Son.
That's the story of the gospel.
He who was able came to those who were unable.
Let's just say I got the message.
And we started seeing the first small glimmers of success.
This week of Spring Break has been pure sunshine. Your kind words, the prayers of friends, opening up, and Jeremiah's successive steps toward more and more connection have pulled up some roots of bitterness that I'd missed in my own efforts. It's been healing.
Tomorrow... where we are now.
That's the life of faith: Hope in things unseen. And hope can feel cruel. It hurts to see my child struggle, but it will be worth seeing him SOAR. Jeremiah Christopher means "God will uplift" and "Christ bearer". How appropriate and how like God to make his name like a promise to me.
This autism will not define my son. It will inform his life, for a time very heavily, but it will not always. It will be redeemed-- however that looks to the eyes of society-- and I eagerly await what's in store.
What convinces me that RDI is the correct treatment for us is their view of the deficits of autism. Namely, the idea of dynamic and static intelligence. Static intelligence is unchanging knowledge and patterns, such as mathematics. This is one reason that individuals with autism often show an aptitude or even prodigy abilities in a very specific, limited field of study. It is predictable, unchanging information. Our Jeremiah does well with many academic tasks; he has a good memory and excels in numbers.
The tenets of RDI are that individuals with autism fail to use their parents as guides to understanding the world. From birth, humans look to their parents to learn language, limits, social interaction, how-to-be. Children are junior apprentices of their parents, naturally learning and taking advantage of challenging tasks that are presented in a developmentally appropriate fashion. What RDI seeks to do is uncover this natural, intuitive learning process and repair it. Repair the learning process, strengthen the bond. Not create it. The bond is (my words) God given.
The first step is to establish what they term the guiding relationship. Through intentional and mindful engagements, parents seek to take away performance demands (such as an over-emphasis in verbal language) and rely on facial expressions, wait time, and analysis of taped engagements to improve these times spent together. Since children with autism have processing delays, the more language they are given, the more overloaded they become. The natural inclination a parent has when their child fails to perform or respond is to repeat the command. It's a vicious cycle of information overload.
What seals the deal for me is the woman sitting in on the meeting. Her daughter is on the spectrum, and has seen so much progress that she is transitioning from a respected field to join this team.
What's neat is she becomes our consultant, the person I probably talk to more than almost anyone about our life. In essence, my professional autism mentor/therapist/cheerleader. She sees my son.
We also start J doing speech therapy with this group, and get paired with a godsend of a therapist. Another person who understands and even enjoys my son-- as he is-- period. All the ladies treat him this way. They don't get flustered if he squeals, or runs away, or otherwise acts inappropriately.
What I am calling defiance, they are calling something else.
Autism. He is simply being.
And I couldn't see it.
RDI? Sold.
We begin.
**
We have been learning and working on RDI principles for almost 6 months, and it's been very challenging to reexamine our beliefs on parenting and to see another point of view. Since we suspected J had autism, I've been afraid that I've totally screwed up and that I'm just one of those people that screw up and I'll never get it right with my son.
One thing RDI seeks to do is help bring the parent-child dynamic to mutually beneficial relationship. Both give and take. What I mean by this is that J will one day be able (please, please Lord) to share his feelings and experiences with me in a way I understand because we will speak the same language--verbally and non-verbally. Right now, as Dr. Gutstein described it, our dynamic at times is like a blind captain trying to lead a deaf crew.
Lots of input, lots of energy, lots of frustration.
A lot has happened in the fifteen months since J's diagnosis: the mad dash for services, pregnancy and a new baby, the typical chaos of a two year old girl, and the general busyness of life. When we started this program, our focus became laser-like: engaging Jeremiah and trying to see him in a new light. This year of his life has been very hard. I told one friend that it was as if all the deposits of loving moments between me and Jeremiah had been exhausted and my tank was empty. Not much was going in, and I had no more reserves at that particular moment.
Holidays are always a challenge with young children, and especially for kids like Jeremiah. The visitors and excitement and activity is wonderful, but when it's time to go back to routine in January, the piper must be paid. For at least 6 weeks, my newborn slept like a rock and my 4 1/2 year old reverted to waking up two to three times a night-- coming to full alertness, ready to go. Midnight, up. Mom reassures at the door. Between two and three, blabbing about whatever was last in his head and ready to be up. This is where I must decide (if I'm even cognizant) if I will wait it out from outside his gated door as he S-C-R-E-A-M-S or go in, pull up the covers, and try to soothe him. Either option could take an hour. These never-ending days just exhaust me, and as much as I know it's useless, I have to admit that sometimes I holler and spank and generally lose my mind after such a battle. It really feels like warfare. And it's hard to determine where his issues end and his defiance begins-- irregular sleep is part of the deal for many kids with autism.
And when your husband's cranky and you're cranky, and your kids are just being kids, and jobs need to be worked and appointments need to be kept and you're just trying to survive another day and not eat a whole gallon of ice cream, you start to despair for a time.
It felt like every single thing he did was to annoy me. One day last week (after a low weekend), Jeremiah started making the "h" sound at me. Hhhhhh. Hhhhhh. He knows I hate this. I've reinforced that this is an excellent way to get negative attention from me. And in the moment, when I'm trying so hard to smile and pause and wait for him to attend my direction and choose to play with me, he hhhhhs. And to my burnt-out ears and frazzled nerves, it feels like he is cursing me. I've cried more these last 30 days than I have the whole first year of his diagnosis. Because it cannot be overlooked or wished away any longer.
About a month ago, we had a tough conversation with our consultant about our progress. Basically, we needed to change our perception of J's behaviors or we would stay stuck. In essence, we were the ones able to change.
This I'll never forget: "We can't expect him to come to us. We have to go to him."
That's the story of the Prodigal Son.
That's the story of the gospel.
He who was able came to those who were unable.
Let's just say I got the message.
And we started seeing the first small glimmers of success.
This week of Spring Break has been pure sunshine. Your kind words, the prayers of friends, opening up, and Jeremiah's successive steps toward more and more connection have pulled up some roots of bitterness that I'd missed in my own efforts. It's been healing.
Tomorrow... where we are now.
Tuesday, April 2, 2013
Meet Jeremiah
Let me start by saying:
THANK YOU.
Releasing my story into the sometimes mean realm of social media left me both hopeful for unexpected connections and anxious, bracing myself for critical inquiries. I received 100 percent of the former, which is a lesson in itself about expecting the best in others and pure grace.
I promised you more of our next steps, and I'm so eager to get there! Tomorrow, we begin the forward march--RDI and the phenomenal support system we've found. However, I can't neglect the star of this show for one more minute: Jeremiah!
Here's a get-to-know-you on all his favorites...
Cereal: Frosted Mini Wheats or Cinnamon Toast Crunch
Beverage: Milk, milk, milk. I'm kinda the milk Nazi... eat that (any fresh fruit or actual food product) or no milk for you!
Food: Berries, Bananas, Corn, Bread, Goldfish
Movie: The Chipmunk Trilogy. Forever and ever, Amen.
Activites: Singing, Swinging outside, Taking a walk to "the rocks" in our neighborhood, going anywhere with Dad (namely CVS or donut runs), Monkey Joe's, playing "tickle hand" with Dad, pouring water/making chocolate milk, I-phone flashcards & games, getting picked up, crashed, or flown; bedtime prayers
Memories: Mickey's House, the Macon Children's museum, Zoo Atlanta
Quirks: (perserverations if we're getting techincal, but hey, my kid likes it, even though I may want to hide in the pantry and cover my ears after it's been repeated for the 100th time that day)
Closing doors and cabinets, ringing doorbells, throwing rocks (not at people!), spinning/manipulating anything that makes noise, crashing on his knees, chewing his fingers
Dislikes: All grooming except using his electric toothbrush, changes in routine
Accomplishments this school year: pushing himself on a skateboard 45 ft. in OT (when he start out at 0), making the down and across motion correctly with a crayon, correct pencil grip, saying hello and goodbye to his teachers (sometimes unprompted!), requesting to use the restroom (okay, only once so far, but this is HUGE-- and no accidents and in undies every day at school!), counting to 50, identifying shapes correctly, even ones I didn't know, like a rhombus, riding the bus successfully, walking up the stairs with proper gait, riding a tricycle-finally!, and most of all speaking more in sentences and engaging me in a give and take.
The flawless, 2 carat diamond soliatre (in an heirloom setting, naturally) of accomplishments:
Asking to play with Mommy and Daddy. As if he could sense it, today he asked me to play a game, push him on the swings, make chocolate milk together and I added playing piggy bank and getting the mail. I attribute this solely to the work we are doing in our engagements that I will talk in detail about tomorrow.
Until then, here's a true glimpse of the Jay Boy.
See why he lights up my world?
Want to help? Go here and sign a petition to help bring about not just awareness, but action in getting specialized autism therapies covered by insurance, such as the RDI program that we are working so diligently on with J. It is not covered by insurance. And it is vital.
It's the Climb. Not just a Miley song... the content of tomorrow's post! C'mon back!
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