Years have a way of flying by...
Yesterday, I stood on the sidelines of a football field and watched my two sons perform in an award-winning marching band program.
As I looked at their handsome faces, I saw disciplined concentration, focusing solely on their performance.
As I watched the band move across the field, I saw my sons balance on tip-toe, perform ballet moves, twist and turn, march backwards, and reverse directions in split-seconds.
For the duration of their presentation, I watched them hold instruments steady in an upright, level position for 10 long minutes as they entered the field, performed, and exited.
And the whole time, I thought to myself... wasn't it yesterday they were babies?
I suppose you could say, I saw the same things every parent saw: Children who are growing up, working towards a cause, performing as a team.
But for me, each and every single performance, each practice, each bus ride, each time my children are included in an activity, I also see God's miracles at work.
I stand there and watch my sons, and in the back of my mind, I see -- can't help but see -- two young boys who had so much against them. I see the young 3 year old, running through the apartment, babbling in some mix of Romanian and English, smiling at me as he emptied the Pampers box and laid his diapers out in designs on the carpet. I see the 3 year old who couldn't distinguish right from left, who had limited upper body strength (because he never crawled), and who had only known hunger and survival, and who was kicked out of preschool because of his energy level. And then I see him surrounded by peers who support him, who have helped him bring out his best efforts. And I see him marching proudly with that heavy barritone, blowing for all he's worth. And I see God.
I look at my tall, freshman son, playing his clarinet, marching on tip-toe, leaning forward and back. I watch his fingers fly across those keys as he works through a trilly passage. I am so proud, and thankful, because I also see a 17 month old baby who could not stand the feel of water on his skin, who screamed like a banshee when I tried to bathe him.(He had never had a bath). I see a boy who could not walk or run without falling. I see a child who did not speak. And I think of an Occupational Therapist who gently said, "You know he's autistic, too?"
These images flash in front of me as I wait for the performance to start. And then I push those memories to the side, and I watch my sons on the field... and I see miracles, and I am greatly humbled.
It is not for us to know God's purpose or His plan. I struggled with infertility for countless years. And God plucked two boys out of orphanages on the other side of the globe and matched them with this crazy old woman. Why? I can not say. But if we are able to glorify God and be a testimony to His glory and good works, than that is more than enough for me.
The next time someone asks you, "Have you seen God at work in your life today?" please share your miracles! If I am asked, I will gaze with love at two teenage boys, and tell you, "I see Him at work every single day."
Copyright
Showing posts with label special needs. Show all posts
Showing posts with label special needs. Show all posts
Sunday, September 29, 2013
Thursday, June 20, 2013
A Sign of the Times
- Take medicine.
Check out: http://www.handsinautism.org/pdf/How_To_Visual_Schedules.pdf if you'd like more information on Visual Schedules.
- Drink Rehydrate.
- Wear lanyard/key.
- Music & Instrument.
Those words are being printed on a small, bright sheet of paper. Then the paper will be taped on the wall at eye level in my son's dorm room when he attends band camp next week.
Whoa! Mom's a bit overprotective, huh? Maybe a bit extreme? No... Mom's making sure she does everything possible for her autistic son to have a successful first trip to away-camp.
Signs, Signs, Everywhere there's signs...
In our house, as in many homes with special needs children, signs help us learn a new behavior. Signs (and visual or written schedules) can be a great way to help my son learn sequential processing.
There's the Morning Routine sign hanging in the boys' bathroom. It's quite the conversation piece for visitors!
Sometimes signs are reminders.
On the fridge, a memory from elementary years still hangs: "No picking or tearing of notebooks or clothing." That sign was on both his desk and his binder for a while.
Sometimes signs have a deeper message.
There's a Creed that hangs by my son's bed. This is about positive thinking. I created it in a fit of exasperation. Far too often, my son's demeanor was negative, like a grumpy old man. One day I decided: We will learn a new way to think. (Even if it was simply memorization, I knew the words would eventually seep into his spirit). So we say his creed with our prayers.
On the fridge, a memory from elementary years still hangs: "No picking or tearing of notebooks or clothing." That sign was on both his desk and his binder for a while.
Sometimes signs have a deeper message.
There's a Creed that hangs by my son's bed. This is about positive thinking. I created it in a fit of exasperation. Far too often, my son's demeanor was negative, like a grumpy old man. One day I decided: We will learn a new way to think. (Even if it was simply memorization, I knew the words would eventually seep into his spirit). So we say his creed with our prayers.
Did I want to hang these signs? No.
Do I think they add a stylish touch to our decor? No.
Do I think they add a stylish touch to our decor? No.
Will I hang a sign if I think it will help my son navigate successfully through this life? You better believe it!
Every day, my son makes great strides in his world. He's come a long way over the years. It's my hope he won't need signs and schedules throughout his house when he matures. (Barring some sort of art-deco obsession with signs).
With prayer, practice, and God's grace, he will be ready to face the world.
I'm sure of it.
I'm sure of it.
I've seen the signs.
Check out: http://www.handsinautism.org/pdf/How_To_Visual_Schedules.pdf if you'd like more information on Visual Schedules.
Tuesday, June 18, 2013
Being a Man
He was 12 years old and in 6th grade... from September 2009
As I pulled out of the hospital parking lot, the teary voice
coming through my cell phone said, "Mom, I had silent lunch today. I
couldn't sit with my friends. The teacher warned me to stop talking at
least 5 times but I couldn't stop, so I had silent lunch."
I
still had 45 minutes of commute to clear my head from work, and needed
time to think about my response. My mind was going in numerous
directions: I was thrilled my Aspie son has a group of band buddies (he
has friends!!!) to sit with at lunch. I was glad to learn the teacher's
are being understanding yet not letting him get away with inappropriate
behavior in class. And I was sad my son was upset yet proud of him for
telling me what's going on in his life. All I said at that time was, "I
love you honey, thank you for telling me what's going on. We'll talk
about this when I get home."
After I got home and changed clothes
I sat down with Robert. As he snuggled next to me, a thought crossed my
mind: There won't be many more times he'll want to snuggle with me as
he grows up... and I already miss the feel of him in my arms.
And
thus came the inspiration for my answer. I waited while Robert relayed
the days events to me then I asked him, "You know how you tell me you're
ready to be grown up? Ready to make your own decisions? Ready to make
the rules?" He nodded yes.
And I asked him, "You know how I tell
you it's not time for you to make the rules? That you're still a kid and
not a man yet?" He nodded yes.
I said, "Well let's talk about
what a righteous man would do. A righteous man will face his challenges
head-on, he will admit his mistakes, face the consequences of his
actions, then move on and strive to do better. Can you do that?"
He quietly said, "Yes Mom, I can." He didn't try to argue with me, didn't try to tell me he was the victim, didn't sass me.
I think he took a small step towards being a man.
Monday, May 27, 2013
Seeing Past the Tears
Twice in the last month, I've found myself crying - actually crying - in public.
I didn't hide my tears, either. That's something a bit new for me. I've always been taught to be strong. Hide the emotion. Hide the bad. Carry forward. Failure is not an option.
I didn't hide my tears, either. That's something a bit new for me. I've always been taught to be strong. Hide the emotion. Hide the bad. Carry forward. Failure is not an option.
Besides, I didn't have time to address my feelings. I had children to house and feed. I had bills to pay and had two children on the Autism spectrum who needed every bit of parenting energy I could give them. So I stuffed those emotions down deep. And I moved forward.
So what brought it on these recent bouts of tears?
Was it the follow-up report from the doctors after my youngest's emergency surgery in December?
Was it my oldest's beautifully insane prom experience?
Was it the excellent IEP meeting last week?
Was it healing, as I reduce some of the toxic demands on my life, and focus on my health and my children?
I think it was all of the above -- and then some.
Am I ready to be hauled away to an asylum? Is it time for the pretty white jacket that reaches around back?
I suppose those answers are debatable. But more likely it's my response to the trauma of years as a special needs parent.
What? That sounds negative? Dramatic?
According to Dr. Astrid Herard, a pediatric psychiatrist at the University of Chicago, "it's not just single traumatic events that can trigger post-traumatic stress disorder. For parents of children with chronic diseases, the years ... can take a collective toll and produce similar symptoms."
Friends, parenting special needs children IS traumatic. The diagnoses may vary, but the reality remains.
A diagnosis is given. Behaviors are documented. Physical limitations are noted. Therapies are started. Prayers are said. Your world tilts. And...
Every time someone stares at your child in pity, or judgement,
Every time a stranger offers unsolicited parenting advice,
Every time a teacher questions your parenting ability,
Every time someone else's child does the age-appropriate thing,
So what brought it on these recent bouts of tears?
Was it the follow-up report from the doctors after my youngest's emergency surgery in December?
Was it my oldest's beautifully insane prom experience?
Was it the excellent IEP meeting last week?
Was it healing, as I reduce some of the toxic demands on my life, and focus on my health and my children?
I think it was all of the above -- and then some.
Am I ready to be hauled away to an asylum? Is it time for the pretty white jacket that reaches around back?
I suppose those answers are debatable. But more likely it's my response to the trauma of years as a special needs parent.
What? That sounds negative? Dramatic?
According to Dr. Astrid Herard, a pediatric psychiatrist at the University of Chicago, "it's not just single traumatic events that can trigger post-traumatic stress disorder. For parents of children with chronic diseases, the years ... can take a collective toll and produce similar symptoms."
Friends, parenting special needs children IS traumatic. The diagnoses may vary, but the reality remains.
A diagnosis is given. Behaviors are documented. Physical limitations are noted. Therapies are started. Prayers are said. Your world tilts. And...
Every time someone stares at your child in pity, or judgement,
Every time a stranger offers unsolicited parenting advice,
Every time a teacher questions your parenting ability,
Every time someone else's child does the age-appropriate thing,
Every time you look at the pile of hospital bills,
Every time you have to leave the playground early,
Every time you have to pack a bag (or wheelchair or stroller) of adaptive equipment,
Every time you have to refuse an invitation because your child won't be able to adapt to new surroundings,
Every time your child isn't invited,
Every time you hold them back for their safety,
Every time you have to explain a chew toy, or a weighted vest, or start buying refrigerator tubing in bulk at the hardware store,
Every time you celebrate a success at Therapy,
Every time someone says "Well he's so smart" or "He looks normal,"
Every time you sit down and prepare to negotiate through an IEP meeting,
Every time you look at the Bible open on your table,
Every time the babysitter quits,
Every time you write a letter of appeal for insurance benefits,
Every time someone says "I know how you feel" when they haven't got a clue,
Every time you see "The Art of War" beside your editions of Special Ed Law on the bookcase...
.... You're tucking away hurt and trauma.
And eventually, those pent-up feelings have to be released. A few triumphs in the face of long struggle can cause everything that's stuffed down deep to rise to the surface. Once the tears start falling, sometimes it's hard to stop them... even harder to sort through the emotions that accompany the tears. But it can be done. With honesty, rest, reflection, and prayer the old hurts and worries can finally be processed. And healing begins.
Does this mean the traumas go away? Unfortunately, no.
My tears are signaling a surge of hope, as I see milestones crossed, triumphs made, and goals expanded. My tears are also in thanksgiving, for a community that has rallied around my sons in a way that humbles and down-right amazes me. God has been so good to send us here.
But this is not the case for all special needs parents. Some children will always be in a wheelchair. Some will depart this earth much sooner than expected. Some will never utter a word, hear a sound, or take a step. Some parents will never have a community rally around them.
Raising children isn't easy, and all good parents work hard within their families. But, parents of special needs children have greater demands in their daily existence. It's that simple.
I beg of you, if you know a family with a special needs child, please pray for them. If you feel led: cook dinner for them, mow their lawn. Give them a couple hours out of the house. Send them a card. Be gentle. Encourage them in good health. Listen, but do not preach. Theirs is an exhausting path to walk.
And should you be there when they cry, simply hand them a tissue, give them a hug. You don't have to say much. Your acceptance and love will help them heal.
Reference: http://www.chicagoparent.com/magazines/web-only/2010-january/parents-and-post-traumatic-stress-disorder
Every time you have to leave the playground early,
Every time you have to pack a bag (or wheelchair or stroller) of adaptive equipment,
Every time you have to refuse an invitation because your child won't be able to adapt to new surroundings,
Every time your child isn't invited,
Every time you hold them back for their safety,
Every time you have to explain a chew toy, or a weighted vest, or start buying refrigerator tubing in bulk at the hardware store,
Every time you celebrate a success at Therapy,
Every time someone says "Well he's so smart" or "He looks normal,"
Every time you sit down and prepare to negotiate through an IEP meeting,
Every time you look at the Bible open on your table,
Every time the babysitter quits,
Every time you write a letter of appeal for insurance benefits,
Every time someone says "I know how you feel" when they haven't got a clue,
Every time you see "The Art of War" beside your editions of Special Ed Law on the bookcase...
.... You're tucking away hurt and trauma.
And eventually, those pent-up feelings have to be released. A few triumphs in the face of long struggle can cause everything that's stuffed down deep to rise to the surface. Once the tears start falling, sometimes it's hard to stop them... even harder to sort through the emotions that accompany the tears. But it can be done. With honesty, rest, reflection, and prayer the old hurts and worries can finally be processed. And healing begins.
Does this mean the traumas go away? Unfortunately, no.
My tears are signaling a surge of hope, as I see milestones crossed, triumphs made, and goals expanded. My tears are also in thanksgiving, for a community that has rallied around my sons in a way that humbles and down-right amazes me. God has been so good to send us here.
But this is not the case for all special needs parents. Some children will always be in a wheelchair. Some will depart this earth much sooner than expected. Some will never utter a word, hear a sound, or take a step. Some parents will never have a community rally around them.
Raising children isn't easy, and all good parents work hard within their families. But, parents of special needs children have greater demands in their daily existence. It's that simple.
I beg of you, if you know a family with a special needs child, please pray for them. If you feel led: cook dinner for them, mow their lawn. Give them a couple hours out of the house. Send them a card. Be gentle. Encourage them in good health. Listen, but do not preach. Theirs is an exhausting path to walk.
And should you be there when they cry, simply hand them a tissue, give them a hug. You don't have to say much. Your acceptance and love will help them heal.
Reference: http://www.chicagoparent.com/magazines/web-only/2010-january/parents-and-post-traumatic-stress-disorder
Monday, May 6, 2013
In Her Wallet
Original post October 2009 when I was still working in the ER... Reposting today in honor of Nurse's Day, and as I move entries from facebook to my blog page.
A pale, middle-aged woman was sitting in one of my assigned rooms, waiting to be seen by the ER physician. I took her vital signs and started asking her questions about her condition. In between episodes of coughing, she told me about her symptoms, and then looked up to me and said, "Do you remember me?"
Sheepishly I told her, "I recognize your face, but can't remember how we met... it was here in the ER?" She said "Yes, I came in with my Mom and you were so nice to her. You two talked about your special needs sons."
I racked my brain but couldn't - and still can't - remember her mom, or the conversation.
The patient continued, "When I told my Mom I was coming to the ER, she got this out of her wallet and told me to look for you today. She wanted you to read it and keep a copy of it."
I looked down at a yellowing copy of an Ann Landers column. It was dated August 14, 1982 and I wondered if my patient's mother had been carrying this paper around for 27 years. As if reading my mind, the woman told me, "My mom loved that poem so much, she made a copy to keep in her wallet. She's had it for years. She wanted you to read it and make a copy for yourself."
By now I had tears in my eyes. Tears of humility because I could not remember this patient who obviously bonded with me. Tears of appreciation for her walk in life with a special needs child. And tears of hope as I was reminded we are never alone.
I touched my patients hand and relayed my sincere thanks to her, and her mother, and made my way to the copy machine while reading:
"Heaven's Very Special Child"
by Edna Massimilla
A meeting was held quite far from earth!
It's time again for another birth.
Said the Angels to the Lord above,
This special child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play;
His thoughts may seem quite far away.
In many ways he won't adapt,
And he'll be known as handicapped.
So let's be careful where he's sent.
We want his life to be content.
Please, Lord, find the parents who will do a
Special job for you.
They will not realize right away
The leading role they're asked to play.
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven,
Their precious charge, so meek and mild,
Is Heaven's very special child.
I was too busy that day to sit and truly absorb this beautiful poem when it was given to me. I tucked it in my wallet, where it remains. Every now and again I take it out of my wallet and read it... tears spilling down my cheek as I think of a very special patient who kept a testimony of faith, hope, and love in her wallet.
A pale, middle-aged woman was sitting in one of my assigned rooms, waiting to be seen by the ER physician. I took her vital signs and started asking her questions about her condition. In between episodes of coughing, she told me about her symptoms, and then looked up to me and said, "Do you remember me?"
Sheepishly I told her, "I recognize your face, but can't remember how we met... it was here in the ER?" She said "Yes, I came in with my Mom and you were so nice to her. You two talked about your special needs sons."
I racked my brain but couldn't - and still can't - remember her mom, or the conversation.
The patient continued, "When I told my Mom I was coming to the ER, she got this out of her wallet and told me to look for you today. She wanted you to read it and keep a copy of it."
I looked down at a yellowing copy of an Ann Landers column. It was dated August 14, 1982 and I wondered if my patient's mother had been carrying this paper around for 27 years. As if reading my mind, the woman told me, "My mom loved that poem so much, she made a copy to keep in her wallet. She's had it for years. She wanted you to read it and make a copy for yourself."
By now I had tears in my eyes. Tears of humility because I could not remember this patient who obviously bonded with me. Tears of appreciation for her walk in life with a special needs child. And tears of hope as I was reminded we are never alone.
I touched my patients hand and relayed my sincere thanks to her, and her mother, and made my way to the copy machine while reading:
"Heaven's Very Special Child"
by Edna Massimilla
A meeting was held quite far from earth!
It's time again for another birth.
Said the Angels to the Lord above,
This special child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play;
His thoughts may seem quite far away.
In many ways he won't adapt,
And he'll be known as handicapped.
So let's be careful where he's sent.
We want his life to be content.
Please, Lord, find the parents who will do a
Special job for you.
They will not realize right away
The leading role they're asked to play.
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven,
Their precious charge, so meek and mild,
Is Heaven's very special child.
I was too busy that day to sit and truly absorb this beautiful poem when it was given to me. I tucked it in my wallet, where it remains. Every now and again I take it out of my wallet and read it... tears spilling down my cheek as I think of a very special patient who kept a testimony of faith, hope, and love in her wallet.
Saturday, April 20, 2013
Life's a Dance
On the way to the band festival, Robert was full of excitement. He was
going to be a helper! Conversation went from band chatter to a very
solemn question about tonight's big event - his first school dance.
Yes, he's attending the Special Needs Prom at school tonight.
His question: "Do you think they'll have a waltz tonight? That's 1,2,3,4, isn't it?"
I told him they might play one but I really doubted it. I offered to help him with dance moves (he usually declines my offers) or watch some youtube videos.
He said, "No, I'll be ok."
Then he talked about seeing his friend, whom we'll call David, tonight. He and "David" have been buddies since 6th grade. "David" is a very tall young man, and as we know, Robert is not very tall. Together they look like Mutt & Jeff, but they've always looked out for each other. Robert would worry about David's grades, and David was a bit of protection for Robert.
Alas, this year, David has followed a different path at the high school and stays with the other students on the remediation hall, and Robert is advancing on a different path through school.
So, big happiness will come from their attending the dance together tonight. Robert told me, "David talked me into going to the prom."
...Fast forward to driving home after the festival.
Robert says, "Mom, I've got to be under my blanket for a while. It's a big day."
No problem, I'm thankful he recognizes his need to unwind. So, I turn on my computer and check messages.
I receive one from a friend who tells me: Robert has asked a young lady to the prom!
WHAT? I had no clue!
He has known this young lady a long time, and he knows she only likes him as a friend.
But still, he asked to the prom, YESTERDAY. And he never told me.
If it hadn't been for a dear friend's message, asking what the young lady should wear... I'd never have known!
This status update is long, so let me sum up and say:
I've cried many tears this afternoon.
Tears of sorrow for my son's social skills challenges.
Tears of thankfulness for friends who are kind and who love my son.
Tears as I think of those who are not so compassionate to my son.
Tears of gratefulness for a young lady's kind heart and christian love of a friend.
Tears of frustration because I didn't see this coming.
Tears of inadequacy because Robert said, "I didn't tell you because you're not a guy. We need a guy."
Tears of gratefulness -- for parents who are raising incredible young people.
Tears because there is still so much good in the world.
Tears because Kroger has corsages available at the last minute.
Tears because my son is growing up.
What a day.
I have to head to work and Grandma is coming over to pitch hit. She and Ryann will be taking pictures and keeping me updated.
Robert has learned he must always talk to Mom about these things, that he should have contacted the young lady's parents, that there are many things we should have done. He has had tears in his eyes. He didn't mean to cause a problem. He just wanted to go to the dance, and he wanted to ask his friend to go with him. He's still under his blanket.
I pray he has a good time tonight with his friends. I pray for many blessings for the young lady, and all the children attending the prom tonight. I pray Miss Clairol keeps making my shade of hair dye, because the grey continues to grow!
xoxo
Yes, he's attending the Special Needs Prom at school tonight.
His question: "Do you think they'll have a waltz tonight? That's 1,2,3,4, isn't it?"
I told him they might play one but I really doubted it. I offered to help him with dance moves (he usually declines my offers) or watch some youtube videos.
He said, "No, I'll be ok."
Then he talked about seeing his friend, whom we'll call David, tonight. He and "David" have been buddies since 6th grade. "David" is a very tall young man, and as we know, Robert is not very tall. Together they look like Mutt & Jeff, but they've always looked out for each other. Robert would worry about David's grades, and David was a bit of protection for Robert.
Alas, this year, David has followed a different path at the high school and stays with the other students on the remediation hall, and Robert is advancing on a different path through school.
So, big happiness will come from their attending the dance together tonight. Robert told me, "David talked me into going to the prom."
...Fast forward to driving home after the festival.
Robert says, "Mom, I've got to be under my blanket for a while. It's a big day."
No problem, I'm thankful he recognizes his need to unwind. So, I turn on my computer and check messages.
I receive one from a friend who tells me: Robert has asked a young lady to the prom!
WHAT? I had no clue!
He has known this young lady a long time, and he knows she only likes him as a friend.
But still, he asked to the prom, YESTERDAY. And he never told me.
If it hadn't been for a dear friend's message, asking what the young lady should wear... I'd never have known!
This status update is long, so let me sum up and say:
I've cried many tears this afternoon.
Tears of sorrow for my son's social skills challenges.
Tears of thankfulness for friends who are kind and who love my son.
Tears as I think of those who are not so compassionate to my son.
Tears of gratefulness for a young lady's kind heart and christian love of a friend.
Tears of frustration because I didn't see this coming.
Tears of inadequacy because Robert said, "I didn't tell you because you're not a guy. We need a guy."
Tears of gratefulness -- for parents who are raising incredible young people.
Tears because there is still so much good in the world.
Tears because Kroger has corsages available at the last minute.
Tears because my son is growing up.
What a day.
I have to head to work and Grandma is coming over to pitch hit. She and Ryann will be taking pictures and keeping me updated.
Robert has learned he must always talk to Mom about these things, that he should have contacted the young lady's parents, that there are many things we should have done. He has had tears in his eyes. He didn't mean to cause a problem. He just wanted to go to the dance, and he wanted to ask his friend to go with him. He's still under his blanket.
I pray he has a good time tonight with his friends. I pray for many blessings for the young lady, and all the children attending the prom tonight. I pray Miss Clairol keeps making my shade of hair dye, because the grey continues to grow!
xoxo
Sunday, January 13, 2013
Celebrate!
As the Miss America pageant took place tonight, the global autism community was cheering on Alexis Wineman, Miss Montana.
Alexis became one of the most popular contestants of the pageant. Not only was she named a finalist, she was also the youngest competitor at this year's pageant, winner of ABC's People's Choice award, and the first contestant in pageant history (to admit being) diagnosed with Autism, specifically PDD-NOS. (Pervasive Developmental Disorder-Not Otherwise Specified).
A miracle!
A vindication!
A winner!
A beauty!
Yet in all the excitement, my mind kept wandering to thoughts of her parents.
According to online articles, they were told their daughter was autistic 7 years ago, long before she ever entered a beauty pageant.
They knew something was different about their child.
They've heard the doctor's diagnosis.
They've had to hold to console their child after she was bullied.
They've had to endure melt-downs.
They've had to deal with school concerns.
They've had their parenting questioned.
They've had sleepless nights.
They've had to teach their child to exist in a non-Autistic world.
They're two parents doing the best they can for their family and their special needs child.
They aren't glossy or glamorous.
They've struggled.
They are "one of us"...
70 years ago, Alexis' parents would've been advised to put their autistic daughter in an institution. This evening, Alexis' parents saw their daughter in a tiara and the Miss America pageant!
I have a secret to tell you:
Tonight I celebrate Miss Montana, but I'm also celebrating her parents!
Sources:
http://www.abilitypath.org/love-laugh--live/family-fun/alexis-wineman-miss-montana-2012.html
http://www.missamerica.org/news/press-releases.aspx?id=625
http://www.people.com/people/article/0,,20664029,00.html
http://abcnews.go.com/blogs/entertainment/2013/01/alexis-wiseman-miss-montana-first-autistic-miss-america-contestant/
http://www.greatfallstribune.com/article/20130111/NEWS01/130111005/Miss-Montana-Alexis-Wineman-makes-history-first-Miss-America-contestant-autism
Thursday, January 10, 2013
Big Brother
Growing up, I longed for an older brother. In my dreams he would've been a protector and advisor. He'd have taken some of the burden off me (I'm the oldest child in my family), he'd have guided me through awkward social situations, helped me study, and eased some of life's challenges. Obviously, my dream could never be a reality.
Many decades later, I'm raising two sons. In the natural order of things, it would be safe to assume my 16 year old plays the role of Big Brother to my 13 year old.
But never assume anything, especially when considering a special needs family. My 16 year old is diagnosed autistic: a compilation of Asperger's Syndrome, Sensory Integration Disorder, ADHD, reading comprehension issues, and sparkling brilliance. He is a delight, but he has not been able to take on the traditional authoritative role reserved for a family's oldest child.
Instead, the role of Big Brother has fallen on my youngest son. He is the organized one, the Communicator, Mentor, and Coach. When I'm at work, he makes sure things are ok at home: dinner's in the microwave, chores are checked off each boys' list, alarm is on, showers taken. When my oldest misses social cues, his younger brother clues him; When my oldest "isn't sure" what someone said, my youngest chimes in; when my oldest leaves things scattered or needs an activity break, my youngest reminds him to be focused. It does not always work smoothly. There have been times when my eldest son says, "Why does he act like the big brother? I'm older." And times when my youngest is simply tired of shouldering the burden. (He has his own sensory issues, including Auditory Processing Disorder. Sometimes, one more noise, sound, or word is too much to tolerate).
So, it's not easy. Sometimes there is chaos and impatience. But it's not "bad" either. There is love and commitment. There are priceless bits of character development. Siblings of special children are often more compassionate, tolerant people.They are warriors and defenders, they develop thick skin, and excellent coping skills. They often champion life's underdogs, and they learn early that Disney lied: it's not all happily-ever-after, but it can be good.
However, our little family's dynamics were recently altered, rather quickly. My youngest has had reconstructive surgery of his right rib cage. For several months, he can not pull, push, or lift ANYthing. He must be careful not to fall, or to get jostled in a crowd. And he fatigues easily. As he recovers, he must fully rely on his older brother to cook dinner in the microwave, to carry clothes for him, to open the door for him, to carry his toys. Physical limitations are not easy for an independent 13 year old to accept. But in this mix of healing energy and angst, I also sense: Relief. From both of my sons.
For my youngest, some of the burden has been reduced. And my oldest now gets to take on the role of Big Brother. He must put down his coins and geckos and focus on the task at hand. He must protect, nurture, and care for his brother. It's time to take the next steps in maturity, to become the caretaker of himself and someone weaker than him. His egocentric universe is going to be under attack, and he may rebel a bit, but he will become a better person, and brother, in the process.
The next few months promise to be ones of healing and rest, they will also be ones of challenges and trade-offs. Possibilities abound and Hope carries us forward.
Many decades later, I'm raising two sons. In the natural order of things, it would be safe to assume my 16 year old plays the role of Big Brother to my 13 year old.
But never assume anything, especially when considering a special needs family. My 16 year old is diagnosed autistic: a compilation of Asperger's Syndrome, Sensory Integration Disorder, ADHD, reading comprehension issues, and sparkling brilliance. He is a delight, but he has not been able to take on the traditional authoritative role reserved for a family's oldest child.
Instead, the role of Big Brother has fallen on my youngest son. He is the organized one, the Communicator, Mentor, and Coach. When I'm at work, he makes sure things are ok at home: dinner's in the microwave, chores are checked off each boys' list, alarm is on, showers taken. When my oldest misses social cues, his younger brother clues him; When my oldest "isn't sure" what someone said, my youngest chimes in; when my oldest leaves things scattered or needs an activity break, my youngest reminds him to be focused. It does not always work smoothly. There have been times when my eldest son says, "Why does he act like the big brother? I'm older." And times when my youngest is simply tired of shouldering the burden. (He has his own sensory issues, including Auditory Processing Disorder. Sometimes, one more noise, sound, or word is too much to tolerate).
So, it's not easy. Sometimes there is chaos and impatience. But it's not "bad" either. There is love and commitment. There are priceless bits of character development. Siblings of special children are often more compassionate, tolerant people.They are warriors and defenders, they develop thick skin, and excellent coping skills. They often champion life's underdogs, and they learn early that Disney lied: it's not all happily-ever-after, but it can be good.
However, our little family's dynamics were recently altered, rather quickly. My youngest has had reconstructive surgery of his right rib cage. For several months, he can not pull, push, or lift ANYthing. He must be careful not to fall, or to get jostled in a crowd. And he fatigues easily. As he recovers, he must fully rely on his older brother to cook dinner in the microwave, to carry clothes for him, to open the door for him, to carry his toys. Physical limitations are not easy for an independent 13 year old to accept. But in this mix of healing energy and angst, I also sense: Relief. From both of my sons.
For my youngest, some of the burden has been reduced. And my oldest now gets to take on the role of Big Brother. He must put down his coins and geckos and focus on the task at hand. He must protect, nurture, and care for his brother. It's time to take the next steps in maturity, to become the caretaker of himself and someone weaker than him. His egocentric universe is going to be under attack, and he may rebel a bit, but he will become a better person, and brother, in the process.
The next few months promise to be ones of healing and rest, they will also be ones of challenges and trade-offs. Possibilities abound and Hope carries us forward.
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