4th Grade is not for us . . .

I am not a fan of 4^th grade.  I didn’t like 4^th grade when Tyler went through, but I thought it was all wrapped up with his boredom in math. But no, it’s fourth grade.  We are not friends.

I knew it would be rough, but we did so much work last spring to prepare Scooter for this.  Teachers, therapists, specialists and parents as a team prepped for this big year. His IEP has been enhanced, we’ve lined up an OT evaluation, he’s getting extra help in areas like interpreting idioms and inferring meaning from context clues while reading.  His new teachers are awesome and were prepared for him, while teachers from the past two years have checked in with the new ones to help with a smooth transition. We were prepped people, ready.  Or so we thought.

Change can be hard for anyone, but it’s often the hated enemy in a home where Autism lives and breathes.  We’ve had a lot of change over the last six months.  The cancer in my dad’s leg got aggressive and he had his leg amputated.  Our entire family is still reverberating with the effects of that particular change.  Last September I went back to school, this time on-line and self-paced.  The kids watched me  steam-roll through 36 credits in 6 months and then slam to a stand-still last spring. And then this summer I changed our lives completely by finding a job for the fall with the school district.

Three weeks before school started I went to work for a Junior High school, knowing that I was throwing wrenches in our lives and routines.  Our schedules are different this year and the kids are getting used to an after school program instead of having mom pick them up right away every day.  Scott had to step up and start taking Tyler to the High School every day.  I don’t have the time I once did to pick up after everyone and run endless errands for every little need.  I have to spend more time in the evening doing laundry and paying bills and trying to remember and take care of all of the things. 

It’s different and hard, but the good far outweighs the struggle.  I love my job.  I love what I do and who I do it for.  I enjoy having ‘more’ to my life now that my boys are getting older.  I can already see the boys growing and stretching into something more mature.  They take more responsibility for their homework and their reading and the many papers that come home with them from school.  They seem more structured, which I love.  Structure is always good, especially for Scooter.

But fourth grade still bites the big one, my friend.  More homework, seriously.  Scooter has actually taken to going outside to scream that he hates homework on occasion and I feel like going out there with him to shout at the sky. He gets a lot of it done at school, but we still have to finish at home.  It can go smoothly, but when it goes bad it’s so, so bad. Because he is so verbal, it is easy to forget that with ASD, language is still slippery and confusing to him and slight differences can throw him.   The other day he yelled at me because while helping with his math I said ‘twelve hundred’.  “Don’t say that!” he squealed, “I hate it when she (his math teacher) does that too!”  “Say what?” I asked “What are you mad about?”  He then told me that he doesn’t like it when people say numbers in a different way, 1200 should be said one thousand two hundred, the right way. He gets confused when a number has two names.   

On a rough night he will whine and cry and ask me why he doesn’t know his math facts better and I don’t know how to explain to him that he doesn’t understand the interchangeability of numbers as easily as others do.  For instance, he may know that 3x6=18, but when he sees 6x3 he doesn’t automatically remember that they are the same. He will remember that 7+8 is 15, but will repeatedly ask me for help with 8+7.  Eventually, he’ll have it all memorized and it won’t be so frustrating for both of us, but right now it really stinks.   And I can’t even think about the writing stuff right now.  It’s such a huge thing in 4^th grade and I am grateful his teacher is so awesome and patient with him on it because I just can’t.  Scooter is so imaginative, but getting his creativity onto paper is very challenging.

I think the real reason I dislike 4^th grade is that it is the first year that truly demands our children to grow up.  There is more responsibility, more thrown on their little shoulders, more maturity required, more autonomy.  And not everyone is ready for it.  Scooter is not ready for it.  There are brief moments I can see with crystal clarity the slight misalignment growing within him. Even growing and maturing is atypical for him, slightly different than everyone around him.  Sometimes he’s ready to leap ahead with his peers and other times he’s trailing behind, wishing for the ease and peace of two years ago.  Our only protection against the chaos raging inside of him is routine, ritual, consistency and predictability.  It’s how he copes and it’s how we keep our lives moving when Scooter’s challenges threaten to bring a day to a screeching halt.

The stress of all of our change and the new school year has been building and last week the dam burst. The morning routine took a beating.  Each day it was harder to get him up, to the table, and a longer wait for him to choose his breakfast.  By Thursday he couldn’t decide on a breakfast at all and prodding him only made him more stressed out, more anxious and slower to make a decision.  And if we can’t get breakfast going, we can’t get anything going.

Scooter cannot do steps B, C & D in his routine before he completes step A.  Period.  That’s it.  There is no deviation or change up or flexibility.  He will not brush his teeth until he’s dressed, but he won’t get dressed until he has his milk.  The milk will not be sipped until his breakfast is done.  On and on, from the moment I wake him until he walks into school, our routine is concrete.  Mornings can devolve over something as simple as a particular blanket being misplaced or the syrup running out mid-waffle. If I want to add or subtract from this routine (or any others), I have to start that prep weeks in advance.  It’s not happening on a whim.

So, last Thursday, when Scooter COULD NOT decide on his breakfast, we COULD NOT move forward with the rest of our morning.  The best way to deal with this is to stay calm, to speak in a soft, gentle and yet, firm, voice.  The best way is to give Scooter some time to catch his breath and find his footing and come at the list of choices from a different angle.  Eventually he’ll right himself and come up with an answer.  It doesn’t help when I get frustrated and edgy and sometimes even whiny while I try to get him moving.  It’s always bad when I have to throw in the threat of changing the routine if he doesn’t decide NOW.  Once we recover and it’s over, it’s pointless to berate him for making us late because he’s not in that moment anymore and it just sounds like yelling at him and meanness and he doesn’t understand it.  And yet, I did all those things because I was so frustrated myself and I was running late for work, and, well, I’m human and hopelessly flawed.

When I dropped the boys off at school, Scooter was back into his routine of the day and was fine.  It was harder for me to let go of the morning blah.  I was mad at myself for losing my patience.  I was frustrated that I can never seem to come up with a way to get Scooter around one of these ‘stalls’.  I usually avoid looking too far ahead, but that morning I braved a glimpse past Elementary school and then shrunk a little bit in fear of the unknown.  And I was sad.  Just. So. Sad.  My poor baby.  And so I prayed for him.  Again.  I prayed for forgiveness for losing patience and faith.  I prayed for his day and his soul and his precious heart.  I prayed for his future which I know is not in my hands.

And I was struck with a memory.  My Grampa Brawand (Dad’s dad) suffered from Parkinson’s Disease. It was as heartbreaking to watch his physical deterioration as it was to watch my Grandmother take care of him and try to hold on to the life they had together.  Grampa had previous physical injuries that exacerbated the symptoms of his disease.  One of the biggest problems he had was that he would walk along and then suddenly not be able to take another step.  Sometimes it was a visual or physical change in the terrain that caused it, but not always.  He just couldn’t move forward, and he couldn’t go around.  He would stand there with his leg trying to take a step and eventually he would either succeed or have to go backwards.

 While I was living in Wisconsin my roommates and I decided to host a dinner for my Grandparents so my Grandma could see where I was living.  We cooked all day, I even made fresh bread.  When the door buzzed and I went down to let them in, I found my Grandma crying at the door.  She was so upset because Grampa couldn’t get inside and they would have to go home.  She apologized over and over.  Grampa couldn’t make it up the walk and through the door to come in the apartment.  He just couldn’t.  There wasn’t an around.  And there wasn’t a thing my Grandma could do for him.  So, she cried.

I took her inside to meet my friends and see my place and fix some plates of food to go home with her.  Grandma wouldn’t stay long since Grampa was waiting for her in the car.  I remember when we walked her out and loaded her plates Grandpa had a smile for me, mixed with some sadness.  He was sad too, that he couldn’t do what he once had, or be what he used to be for us.

I wish my Grandma was here so I could tell her that I get it now, that I understand in a way I never could have before.  I know exactly how she felt that day, standing beside someone that needed to take a step that they could not.  I know how excruciating it is to want to help someone and make it better when there is nothing to be done.  I feel just how much it hurts to love someone so much and not be able to ‘fix’ what is wrong.  I wish she was here to cry with me now. And oh, how I wish they both knew Scooter.  Sometimes when Scooter grins at me, I see my Grampa within his little smirk.  I think they would have gotten each other, clicked in a way that would have been special for both of them. Scooter has my Grampa's 'corny' sense of humor.

I think I was surprised by my memory of that day with my Grandparents because I needed to remember that this wasn’t the end of their story.  We had two more years with my Grandma and four with my Grampa before they left us.  Those years had their share of tears and frustration, but they also overflowed with smiles and laughter and love.   

Fourth grade is not my friend.  I am not a fan and Scooter isn’t either.  He told me tonight that he doesn’t want to be in fourth grade anymore.  He said it’s too much hard work and there isn’t enough time to run around.  It is hard and it is maddening and it is heartbreaking, but it is within our power to overcome.  I told him we would get through it together.  I also told him that I believe in him.  It was enough for tonight, he fell soundly asleep.  I wish it was always that easy.

 Thanks and God Bless,

Kisses, Tears and Gratitude . . .

Scooter is 9 today.  9!!!!!  Where has the time gone?  It's flying by .... seriously.  It was just a heartbeat ago that I brought him home.  It was just a moment ago that I swaddled him in two blankets and kangaroo pouch and he passed out as soon as he was wrapped up like an egg roll.

I was thinking this morning about my three children and all the wishes, dreams and prayers I have for them.  Some of them are universal: peace, joy, happiness, love and safety.  Others are specific to their talents, skills or even fears:  Tyler's love of music and his need to build and his shyness, Riley's tiny body and his ferocity on a soccer field and his charm and soft heart, Scooter's sensitive heart and his need to draw and create and his constant struggle to navigate the world. 

Parenting is such a crazy experience.  There are so many moments that meld one into another, you think you will go insane from the boredom and the looming horizon of forever.  Bedtimes, baths, homework and chores.  And when something happens that is out of the ordinary, you think you will never forget it.  Because it was unique and different.  But the truth is, what you remember is the ordinary, the mundane.  As the children get older you long for the moments that you did the same thing over and over again, a long, long time ago.

There's a video/poem thing racing across the web this week where a father focuses on just those emotions.  He basically says cherish this very moment because you don't know when the last time is coming for each "event".  You can't know when the last time will be that you carry your child or they crawl into bed with you or run to your arms.  It's the last time and you don't know it until it's gone, and you can't remember the exact last time. 

I kind of hated this video.  ( I had a few reasons, beginning with the fact that it is NOT a poem, it's a monologue ... but that's an argument for another day.)  It was sweet and poignant and everything but there was something about it that bothered me.  I think I finally figured it out this morning.  All of the things this father focused on were things you do with every child, things I did for all my children.  And it's true, we focus so much on the 'firsts' because they are special but we have no way of knowing when the last time we do anything is going to be until it's long gone.  But what if you can't remember some of the 'firsts' either?

And that's what I don't like about it.  This stupid video made me realize that I can't quite put my finger on the moment that things shifted in our world.  I can't remember the first time that Scooter turned his face from me and wouldn't let me kiss his cheeks, eyes or lips.  I don't know when the first time he balked at a photo being taken happened or when he refused to walk on sand the first time or when he ran from the smell of bread.  I can't recall what the first food was that he stopped eating.  I don't remember the very first moment that Scooter's 'mask' fell across his face. Those first times, they were last times as well.  They were the end of 'typical' in our life and we had no idea at all that our little world was changing so drastically.

It's Scooter's 9th birthday, and just like every birthday and holiday I'll ask him a question.  Same question every time.  "Scooter, it's a special day today, can I kiss your face today?  Just once?  Very light, I promise.  Just one kiss on your lips or your cheek?"  I'm not holding my breath ... it's been a very long time since he's said yes.  I don't ask often because I don't want to badger him with it or make him feel less than he is because he can't handle this bit of affection.  Just birthdays, Christmas and an occasional special moment that feels right.  But I keep asking because I will always want just one more and I never want the last one to be the last time.

I do remember the last time.  It was on my 40th birthday, I talked him into it as a gift for me.  I got one brief, very special moment where Scooter allowed me the pleasure of kissing his cheek, just below the cheekbone but not too near his mouth.  He pointed out the spot I was allowed after some negotiation on just how far I could go.  I will hold on to that moment forever, or at least until he allows me another chance and I'm hopeful that he will someday.  And as special as that birthday was, in so many ways and thanks to so many people, the kiss was the highlight, trust me.

There are also last times in our lives as parents where we almost celebrate the chance to forget.  Scott and I were thrilled last year when we realized we had spent our very last night sitting outside Scooter's room, within his view, while he fell asleep.  Late last spring Scooter had his very last assist from the van with an aide and finally took his first walk into school of his own volition. I look forward to forgetting the last time Scooter fights me about going to school or throws a fit about someone sitting in his spot on the couch.

Right now I remember the last time I tucked Scooter in as an 8 year old.  I remember the last time he told me he loved me, just a few days ago.  I remember the last time he let me comb his hair or hug him tight or kiss the top of his head, they were just this morning.  I remember the last time he made me laugh, after dinner yesterday. And I remember the last time I planted a kiss on the only place allowed on his face, just next to his hair line, right above his ear.  That was yesterday afternoon.

I cannot tell you how many tears I've cried for my children or how many prayers I have prayed for them.   I would never venture a guess at which of my three beloveds has received more of either.  But I can say that I remember more specifically the cause of the tears and the purpose of the prayers on more occasions for Scooter. I think that's because although he changes and makes progress and triumphs, there is a part of him that never moves forward, or moves so slowly it's hard to detect.  Those prayers and those tears linger with me because his struggle is ever present and those prayers don't change as much in content as the prayers for my other two do.

I'm sounding fairly melancholy today, which isn't my intention.  I just want to remember how I feel in this very moment.  Grateful.  Grateful that although I can't kiss my sweet boy a million times in a million places, he is affectionate ...  So many children on spectrum cannot handle even the slightest touch or expression of affection.  My heart aches for those mommas and I pray for them all the time.

I am grateful that Scooter is in a school with people that strive every day to help him succeed. I am so very grateful that Scooter is healthy and happy and has friends and loves to play legos and read silly stories and tell jokes and play games.  Grateful that even though our lives are alphabet soup and non-typical, they are blessed beyond measure with love.  And, as always, I am eternally grateful that God chose me to be the mother of this amazing, special, smart, funny and BRAVE 9 year old.

God Bless.