My Son

A few months ago, I blogged about my kids and I enrolling in a study at Children's Hospital about autism and genetics.

Part of the process involved parent interview, another direct testing and observation of A.  The final piece was taking blood samples.  

A big envelope from Children's came in the mail this week, containing the results of the ADOS (Autism Diagnostic Observation Schedule- mom), DAS-II (Differential Ability Scales-Andrew), ADI-R (Autism Diagnostic Interview- Andrew), and the Vineland Adaptive Behavior Scales (mom).  

The rational part of me knows they don't say anything I don't already know.  I do, however, know that reading the report will do nothing but make me sad and likely cry.  I don't want Andrew to be defined by test scores or autism.  Test scores are just numbers; he is a handsome, funny, living, breathing, and special young man.  So, why can't I just throw out the packet?

I can't because these tests no longer show progress, and that itself is data which sadly we need to keep.  Autism is autism. You can call it better/different/lighter names like PDD-NOS or HFA , but it doesn't change the individual.  Andrew was 3 when someone told us he might "lose the diagnosis", for she considered him so "high-functioning".  I still don't know what that term means.  In fact, it may as well be meaningless.

Will Andrew graduate from school?  Go to college?  Live on his own?  Fall in love and get married?  Have children?  I don't know.  I suspect his splinter skills in an area or two of academics will allow him to hold a job.  I don't think he'll ever care enough about emotions to want to fall in love, to feel comfort from another. 

I am not a patient person.  I peeked at the contents of the envelope, the report written in a strength-based fashion, as are all reports that talk about disabilities.  The team highlights the things A can do (despite the fact he scores under the 1st percentile for nearly everything), mentioning them at the beginning and end.  The report talks about how polite he was and that he enjoyed talking about his bears and the weather.  Those are the good things.

I won't let scores define my son.  He is my little boy;  in many ways he's the center of my universe.  I will advocate for him and what he needs until I am blue in the face or until every hair on my head turns white (or falls out).  I don't blame anyone for autism.  I do wish we would have known earlier and intervened more intensely before he was 2.5.  I wish the stupid Early Intervention program hadn't screened him out at 16 months because one therapist thought she saw him mimic the word "duck" on a page. 6 weeks lost.


Tomorrow, we'll venture outside (with the heatwave over, god-willing) and explore the Public Gardens or the Museum of Science.  Maybe we'll visit the State House so he can see where Mom used to work.  We'll have a "Mom and A" day and hopefully have fun during it.  I will hug him when he's sad or overwhelmed and offer him bears for comfort.  I'll "talk" back to the bears when he makes them "talk" to me.  I'll do all this because I love him, because I accept him, and because I can't imagine putting him through the intensive medical treatments I know others do, trying to cure their kids, in an effort to get a "new and improved Andrew".  Gosh, I'm beyond thrilled he willingly takes a multi-vitamin :-)

I'll hold on to hope, too.  Peace, my friends.

Moments of grace

A boy and his bears.  The bears are his best friends, next to his little sisters.

My handsome not-so-little boy

Historically, haircuts have not gone well for my young man.  See here and especially here.  Today, however, he shined.

A definition of success for Andrew: stress-free community outing leading to a quick, painless trim. This may not seem like "big news" in the world of special education, but it is HUGE news in my world of parenting a child with autism.  Because of the high-quality Occupational Therapy he receives (thank you, Pathways), my son can tolerate what is, for most young men a stress-free experience.  For him, they have typically included screaming (him), tears (him and me), and frustration (him, me, hair dresser, and other patrons).

Thank you, Jen Z., Lorraine, Kelly, Kerry, Bob and every other amazing OT who helped us get here.  It's a good place.  Andrew is happy with the cookie he chose as a reward for rocking the hair cut experience.

For what it's worth, it makes for a strange life when the highlight of the day has been a hair cut.  Next, onto the needed, and important, process of buying a razor as Andrew very much does not want the beard fuzz on his chin or above his lip. 

My little boy will soon be a teenager.  Time flies.

Mother's Day

Just when you wonder if you're a good mom who is making an imprint in your child's life, she comes up with something like this.  Last year, S wrote this all by herself,  printed it out, and glued it onto the cover of the Boston Sunday Globe.

Mother's Day has never been the "Hallmark Holiday" for me that it can be for others.  I don't know my birth mother, who left me at an orphanage in India.  I am so blessed to have a few very special women in my life who have helped fill the void. I amblessed my birth mother did not give uo but cared enough to allow me to be adopted.

All I ever wanted was to be a mom, and a good one.   Being a mother has made me more tolerant, kinder, gentler, and more patient (the latter is a work in progress).

I will never lose sight of the fact that my children are more important than anything else.  The village they belong to loves them.

I know what it's like to feel the weight of the world (specifically the IEP/school one) sitting on your shoulders.   Today presented an opportunity to pay that friendship and kindness forward... To all you *extra-special* moms, know you are loved (even if your kids can't/don't tell you as much, even if you don't *get* breakfast in bed, flowers, or jewelery, even if you feel stressed to the point of exhaustion by a system which struggles/often-time fails to support kids and families).  Your children and friends care.  It takes a village, folks, doesn't it?  

S's "article" tells me I must be doing *something* right.

Happy Mother's Day!

Finding inspiration at home and at work

Today brought a birthday visit from my friend and her kids.  The plan was for Sarah to learn to make chicken, broccoli, and ziti from scratch.  Mission accomplished, with the added bonus of having uber-cool nails applied.  It touches my heart to know someone cared enough about my daughter to spend an afternoon doing something fun with her for her birthday, just because.

The coolest part of the day besides hanging out with my friend and seeing Sarah so happy was hanging out with Ryan.  His mom has given permission for me to write he is a very special client, one whose case in many ways defined my career and work.  In six months, he has started talking more, following directions, and his tantrums have lessened in intensity.  He started crying when it was time to go home, I talked him down and we made a deal that he would come back to play soon.  The tears stopped and he got over "it" and walked to the car peacefully.  When kids with autism get the right services, they can fly.  And, while the work has just begun, he is flying.  That is amazing to witness.

Genetics

With spring break week drawing to a close, it's surreal to think that my "baby" girl will turn "double digits" on Monday.  I cannot remember not being a mom to these four children.  But, every day it gets more difficult to remember the frenetic days of babyhood and accompanying nights of sleeplessness, the never-ending diapers and pull-ups, the twelve incarnations of strollers, toddler-dom, Little People everywhere, Blues Clues, preschool, Buzz Lightyear and Bob the Builder tents, and Build-a-Bears...  parenting four kids under six, in most meaningful ways by myself, was a whirlwind.  It was fun, I worried about safety and making playdates and paying for preschool, sports, and lessons.  Now, while they have active social lives and are avid readers and iPod users, I worry about things like internet safety and how to pay four college tuitions.  And, then there is Andrew.

2005

Given the special "gifts" of my children, mostly Andrew's autism, our family is a genetic researcher's dream.  We'd be ideal if not for the fact I have zero family history to provide, being adopted from Mother Theresa's orphanage in India as an infant.  

As part of an NIH-funded genetic research study, I had the parent response tool of the ADOS administered for the second time in Andrew's 12 years.  Gosh, I forgot how sad and lonely those tests can make any mom feel.  The questions focus on everything he can't do; thinking back to when he was 4-5 (the age the testing tool asks you to describe his social functioning at in addition to current day functioning).  The reality is that he isn't that different today, at 12.5, that he was then.  Interest in peers.  None, perhaps less.  Meaningful conversations?  Sometimes, with highly familiar adults.  Stereo-typical behaviors? Yup, still there, although changed.  He's gone from spinning wheels and full body flapping to "running laps/pacing" while vocalizing, and finger-tapping.  Recounting all of this, my heart dropped in the window-less conference room.

Why did I do it at all?  I participate with the hope that maybe someone will be able to find genetic markers in siblings and that children will be able to access intensive intervention earlier and hopefully have better outcomes.  As completely uninspired as I am with "Lighting it up Blue" nowadays (sorry, fellow autism moms), this seemed a way to help the smart people find some answers, if indeed there are answers to be found.

As I sat with the genetic counselor, the first question was easy to answer.  How many pregnancies have you had?  I answered "4".  Next to each number, a name, sex, birthdate, birth weight, gestational age, and mother's age at conception were filled in.  However, it asked about pregnancies, not just live births.  And, yes, they wanted to know if there were pregnancies which did not lead to live births (the PC way of stating miscarriage or voluntary termination).  They wanted to know the gestational age at termination.  I went a bit numb, but I added the accurate data.  There became a row 5 and 6; 6 is what broke my heart. 

It had been a very long time since since I even thought about it, more or less cried about it.  (Note to genetic counselors:  autism moms may be strong, but we are vulnerable as hell, and adding other factors in, you might want to keep a box of tissues on-hand).   When I think of the 6th, in the context of an autism study especially, I can feel the pain all over again.  When you mix the genetic material of two parents, both of whose immediate families have been severely affected by autism, the odds don't seem high you would create a child who either does not have ASD or isn't highly susceptible to having the diagnosis.

Being a mom has been the great joy in, and accomplishment of, my life.  While it's true that my kids have their challenges, I can not imagine my life without them in it.  My oldest was medically fragile, with a diagnosis, at age 3 months, of something no one could pronounce.  Andrew was diagnosed with  PDD-NOS, an autism spectrum disorder, at age 2.5.  I'm not sure why his little sister was so anxious to get "out", but she decided being born 7.5 weeks early was a grand idea, hence I'm a member of the emergency c-section/preemie club, too.  My baby has learning disabilities, in many ways more pronounced than the others, since she is in inclusion.  She struggles so much; it's getting harder as she's getting older.  Thankfully, after some careful advocacy, she is using an iPad or laptop for much written output and her work is being modified to meet her needs and allow her to feel more successful.

Now

I celebrate a decade of Sarah- her joyful spirit, big brown eyes, creativity, and love.   Yet, I am thinking about Row #6 on the sheet the geneticist filled out.  I wonder what it would be like to have a preschooler again.  I remember the horrifically painful (physically and emotionally) experience of expecting a little boy and then not being pregnant any longer, seeing him, and then consenting for a local hospital (part of the Autism Consortium) to utilize his body (called a fetus, of course) for research.  Now, my blood and Andrew's are being used by the same group of researchers, for the same over-arching purpose.

I truly hope autism will someday have a cure, but first we need to find a cause.  On Monday, my daughter will turn 10.  Tomorrow, we will enjoy a red velvet cake with cheesecake in the middle to celebrate (her request).  She will beg to see "The Hunger Games", wanting to be like her big sisters.  I will say no for a variety of reasons, including the fact autism chains us to our home on weekends, and autism and big birthday parties definitely do not get along, at least at the age of 12.5.

Hope.  That's what you have to have as a mom, for all your kids, hope that you are doing a good job and that they are growing and learning and will someday be respectful, kind adults who make a bigger difference in the world than certainly I have.  You also have to have a lot of love.  The latter, I possess in spades.

This is a time to put work away and play with my kids and ENJOY them.   Have a fabulous weekend and hug your children.

A REAL photo essay

Just when you think you should change your middle name to stress, a really good day appears out of the blue.  Before school, Andrew was photographed by the awesome Kristin Chalmers for her Broad Spectrum Project.  The photos speak for themselves. 

Love you, Kristin.  Thank you for capturing Andrew so perfectly.  You have an amazing gift.

Unplugged

I was cleaning out an old pocketbook and found the old Nokia flip-phone that preceded my Blackberry.  My 9 year old exclaimed, "That phone is so old. It must be 10 years old".  No, not really,  it's probably only 4 years old.  But, it did get me thinking about how technology has become a central part of my life.  I am not sure, however, how comfortable I am with it invading every little crevasse of my home, thoughts, and being.

In the past few years, we've been fortunate to be able to add nifty technology items to our household.   The iPod Nanos weren't a big deal as the only fun feature is a camera/video camera that we didn't really use.  At the time, we didn't own a Mac so therefore didn't get all the available convenience out of them anyways.  We also got a GPS for the car, affectionately named Jinger, who usually gets me from point A to point B relatively unscathed.

Then, came the iPhone (me) and the iTouch's (kids); talk about being uber-connected.  Between the iPhone and the computers we own (4 in total, including 1 workhorse desktop and 3 laptops in various states of usage), I am always talking to someone, reading or writing email (easier on a iPhone than Blackberry, but imperfect thanks to the insane "auto-correct" feature it has), or looking at a screen.

In some ways,  the technology is good; it allows me to multi-task.  Taking a walk or hike while listening to my iPod is fine.  I don't think it takes away from the experience, but I also shut the music off sometimes, especially in the mornings, to enjoy the sounds of the Pond, or the Fells.

In contrast, having my iPhone in my hand checking emails while waiting at the pharmacy for a prescription, at a school while waiting for a meeting to start, looking at documents and other pertinent information on the screen, or even while I am home and involved in a project has started to grate on my nerves.  I want to be connected, but I also remember the days before laptops and cellphones (not that long ago, and I managed just fine.)   Working from home, specifically in a home without a dedicated home office, requires a certain discipline of keeping 'work time' focused on only work.  The screens are okay; that is until I have to buckle down and read a long, detailed assessment or an IEP, taking notes (in my case, handwritten on the first go by), or write a strategic case management plan (again always by hand first).

Having the printer and fax going, a computer humming, and the "not-ok-in-a-real-office" luxury of a Yankee Candle burning, all seem to work.  Interestingly, I've learned that doing work on my laptop doesn't work when at home.  I am at least twice as productive when I use the desktop and am sitting in an office chair, in front of a wall usually covered in sticky notes about kids and cases. It's something which makes the work seem more "real".

Then, there is the opposite end of the spectrum.  I am home, alone or with occupied kids, and the laptop becomes too tempting, screen open.  How many millions of hours have been wasted on Facebook when I could have been reading a book?  I have never played games on the computer, but I also have never really enjoyed board or card games, period.

In the past few days, I've made a concerted effort to shut down at a certain time and not open the laptop again until I am showered and dressed in the morning.  I've stopped myself from checking my email on my phone, despite it being in close reach while on my nightstand.

I have slept better and I feel a bit liberated.  Gone is the inability to read a book cover-to-cover, which developed over the past few years. (This is saying A LOT as I have always loved to read).    I now know I wasn't distracted by anything internally (hello ADD and the Ritalin I now take along with 90% of the population), but rather the distractability also had a lot to do with the fact I was always looking at a screen and that the screen was always available.  Why read words on a page when you can see a vibrant screen?  I don't want a Kindle or a Nook and will never buy one.  I like the feeling of holding a book.

Much like the bowl of candy you *really* want more of and you tell your kids to hide where you can't find it because it is too damn tempting, I should entrust my laptop to one of my more responsible kids for the same purpose.  In addition, it's too easy to write something you'll regret on the internet or in an email.  Computers offer "instant gratification",  a place where even patient people do dumb things.  Note: I don't think I have ever had much patience.  Dealing with tantrums and autism has taught me some.

This post isn't about living an unplugged lifestyle.  I'd be bored and don't think the granola-crunchy thing is for me.  (I went hiking/real camping overnight in the woods, once, with a friend:  I hated it.)   As an autism mom, my life is pretty isolating at times, so the internet has the ability to keep me connected to those I love; call it a "virtual village", if you will.  Truthfully, without the support on-line, I'd be a puddle on the floor, having cried myself into it after dealing with a tantrum or anxiety marathon.  I can't even count the number of friends I've made beginning on-line, or the clients who have found me there.

Self-control is not a bad quality.  For a variety of reasons this past year, I haven't been able to get out and have much of a life.  Okay, that's a whole other post, but I haven't done a lot of walking sans the places within 5 miles from home; the old standy-bys.  This week's forecast doesn't include rain; a hike or walk in an old favorite like Lynn Woods, Cutler Park, or somewhere up Route 2 is definitely in order.  I can't lock the phone in the car in case I get lost, injured and need help without which I'd die, you know, all the excuses... I can, however, shut off the internet,  listen to some music, and enjoy the brisk fresh air.

Of course, I'll blog afterwards about how great it was being unplugged.

S's words

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S’s Story: Who I most admire

January 13, 2012, written by S.- Grade 4

“Chirp, chirp, chirp”, the birds sang.  “What a lovely day”, I thought, as I walked around Horn Pond with my mom.  My mom said,  “I love spending time with you.”  “Me too”, I replied.

My mom’s job is very important.  She is a special education advocate.  This means she helps kids gets special services from their schools.  I admire her because she will work for free sometimes.  She works for free so people with not much money can still have special services for their kid or kids.

After my mom’s done with her work, she is very generous to me and my siblings, J, A, and E.  She brings us to concerts, gets us pets, buys us toys and books, and helps us with projects.   She is also generous with her time and helps anyone who needs it.  If I told you everything she did that was generous I would end up writing up writing a book that is 300,000 pages long.  I have about 900,000 million memories of her being generous and nice.

She’s also very caring.  She gives my siblings and I plenty of food and a nice, big house, nice clothes, and so on. She makes me feel better when I am hurt.  She loves me a lot and that’s why she is very caring.

If I wanted to, I could write a book about my mom.  Now you know all about how caring and generous she is and how much I admire my mom.  My mom is great.  That’s why I chose her to write this story about.

The End

1/14/12

Holidays

With the holiday season in full swing, I want to ask if you'll keep your heart open to the other one percent of us out there, the autism community. Like you, we will be out-and-about during this busy time of the year.  It is my hope that when you see us, you keep your comments, suggestions, and criticisms to yourself. 

How will you know me?

I am the boy with hair so long I look like a girl. Sensory issues make haircuts painful for me and my Mom is willing to pick her battles.  Hair is not one of them. 

I am the little girl in a spring cotton dress when I need to be wearing winter clothing, but I cannot stand winter clothing.  Trust me, Mom makes me wear a coat outside, so don’t remind her that my dress is wrong. She knows.

If I am verbal, I might speak in a monotone voice and repeat lines from my favorite movie or TV show.  If I cannot speak, I might look past you, or reach up and touch your mouth as I try to understand why mine will not work like yours. I mean you no harm, I am trying to understand my world and how to make it work. I might stim, pacing back-and-forth, back-and-forth. 

If I am on the higher end of the spectrum, I might amaze you with my knowledge of the calendar and presidents, yet I cannot answer you when you ask me what I want for Christmas.   You know what?  I don't want anything.  I want to be with those who love me, have a calm and predictable day, and see my mom and sisters happy and calm.  (I will, however, enjoy the m&m's in the Christmas stocking my grandma knot for me right after I was born, and a present or tow if they include a bear.  Don't tell my mom, but I'd also really like noise deafening head-phones, too.)

I might spin in circles,  flap my hands and/or jump up and down. I might carry a stuffed bear that I should have outgrown years ago.   I might need to count all the ceiling tiles in the restaurant before I can sit at the table. I may need to touch the glass window over and over and over. Please don’t tell me to stop, I really wish I could. I might talk too loud and say all the wrong things to the waitress taking our order. I might burst into tears when my plate comes because the French fries are too fat, or they are already touching ketch-up or another food item. I'll have a melt down; I'd wish I knew why it mattered too.

When my Mom takes me to see Santa in the Mall, I might rush past you.  Standing in line is very, very hard for me to understand or do. Please don’t tell my Mom how rude I am, she is dealing with enough trying to keep up with me and simultaneously enjoy my siblings sitting on Santa’s lap and talking to him.  If I have a melt down because I saw a camera flash, let it go. Keep your advice to yourself. If I am taller than my Mom and still want to see Santa, please understand that I am just now for the first time in my life able to enjoy Christmas and Mom is excited to finally see her "baby"enjoy this holiday.  When I was 3 and 4, I was unable to go into public places or even understand Santa. Now I can enjoy him and my Mom has earned the right to see me give him a high-five.  I have earned the right to shake his hand and give him a high five.

I get very excited over Hanukkah, and want to be included. I might be over stimulated by the candle flame when you light the menorah and try to touch it or blow it out. I might cover my ears thinking it is going to blow up like the fire crackers did last 4th of July. Please don’t scold me for hiding under the dining room table and trying to pull your beautiful blue table cloth off as I duck under. If I snatch every chocolate gold covered coin off the table, I am sorry.  I like to collect shiny things. Yes, Mom does think it is a shame I can’t keep my yarmulke on my head; and no, she can’t just force me to wear it.

Please understand that light and sound, touch, even hot and cold can confuse or upset me. I react to these events in different ways. I may withdraw even more. I may have a meltdown. I might stim to comfort myself. I might hurt myself or turn on my Mom and use her like a punching bag. I will never learn how to understand the world if I am not allowed to venture into it. Each new event takes time, patience, understanding and lots and lots of hard work on my part and that of my parents, and therapist. I am trying, they are trying, please give me a chance without judging me.

I am the other one percent. I am your next door neighbor’s child. I am your cousin’s child.  I am a classmate of your child’s.  I am a member of your community.  I have autism. I am not disabled; I am differently-abled.  

I am not a tragedy, I am a person. Not understanding the difference is a tragedy.  Just think how you would want to be treated, if you were a part of the other one percent.

villages and autism

I know it takes a village.  In my work, that's a lot of what I've been providing to families who need them, this week in particular.  However, I've been lax to reach out to my own village at a time we could use some kindness and good/better karma directed towards our little corner of the universe.

This autism-heavy week has been a stark reminder of the hell brought on by what this disorder can do to my kid.   Many #youmightbetheparentofachildwithautism quips were batted around in the past week by me and many others .  That  light-hearted back-and-forth was a welcome diversion from what autism really exists as in our home.

Reality sunk in on Sunday after I had what seemed like really awful heartburn (having only experienced once before this sharp, searing pain) and someone mentioned gallbladders.  Not heartburn, after all.  Turns out my gallbladder and I don't get along so well and it should come out.   As if I have time for that.  A cause? Stress.

Today, Andrew's laptop screen was broken during a power struggle/behavior/meltdown.  This is the second broken laptop in 4 months.  In fact, this was the laptop that replaced the other one that got thrown on the hardwood floor during a similar tantrum.

The pieces of the puzzle which is Andrew aren't fitting together very well at all this week.

He's 12, a boy in what is becoming shockingly more and more like a man's body.  While his bears have brought him great joy and comfort over the years (remember, he doesn't have functional play skills and even could care less about video games, oh how I wish my son would play a game on the Wii like other boys his age), nothing brought him peace tonight.  For seven hours, with short breaks, he was a ball of anxiety, uncomfortable even with my touch or reassurance, which is not typical for him.

He was able to say, "I've been giving most people an attitude recently. I hate lots of people."  My heart broke.  So many people love him, yet he knows (and now names) people he views as having abandoned him (in his mind, because he's autistic).  That's his new "out, by the way.  When the behaviors happen, he maintains, "I'm tantrumming and not calming down because I am autistic".  This drives his older sister crazy; he drives her completely nuts in general.  I feel badly for her, being the older sib of a child with autism must be so damn hard.

As a mom, I feel paralyzed.  Not a little unable to help, but a lot unable to even get through to the boy who usually loves to snuggle with his mom, make brownies, or have endless conversations about the complex, intricate lives of the many bears, Build-A-Bear and others, who live here.

A question he kept asking over and over again today was new. "Are you and Dad every going to get married again?"  I told him we were not going to get married to each other.  Then he wanted to know if we would marry other people, have more kids, and, by the way, would they have autism just like him.

My little boy, not so little as he is taller than me, lies next to me, a bear in his arms, a medication for anxiety and sleep in his body, a prisoner to autism and to the hellish chaos it creates.  Tonight, fully recognizing all the things I have to be thankful for and that others have many more challenges, I mourn for the boy I thought he would be and commit to trying to better understand and accept the boy he is. I pray for strength for him; as I also pray for strength for those around him.

He needs a village now, whether he wants to admit it or not.  His sisters and I could use one, too.  Hopefully, tomorrow will bring Andrew some peace.

Giving thanks

Today, I am thankful for friends who are my chosen family, children who give me purpose, bring me joy, and who I love more than life itself, work I truly enjoy (along with some really wonderful clients who I feel blessed to also call friends), and a village who envelops my family in caring, kindness, and strength.

Friends, however few, are honest, fun, compassionate, giving, and even inspirational.

In a year where I thought I had found my faith, only to lose it again, I give thanks to God or whatever greater power has existed, and hope she/he comes back into our lives.  I give thanks to the good people at our church, who offered Christian love and support during a very tough spring/summer and am glad my kids made some special friendships there.  

I especially give thanks for the moms I know who show me every day, in small and large ways, how to be a better person.  I'm still learning and am beyond impressed by what I get to witness every week; moms being caretakers and most times taking good care of themselves, too.

This year, I am thankful to be in a position to help others, the place I lived in for many years pre-2006.  It gives me a sense of purpose to support others, just as others have supported us when we have needed it.

Finally, I'd be remiss to not to be thankful for the very special kids I work for and with, along with some very talented educators.  I am inspired by children who overcome such adversity and by their parents who only want them to be happy and succeed.  I am fortunate to be able to earn a living helping children thrive.

Happy Thanksgiving, friends!  May you be as blessed as I am.  My hope is that we all, me included, will be able to realize that on even the not-so-good days that inevitably occur in the cycle of life.

Little People

Sometimes, you get to play hooky from all the household chores, sit down on the rug and play with your kid.  At 9, Sarah still has an amazing imagination.  We have loved to play with this set of Fisher Price Little People, circa 1978-ish, my set from my childhood, over the years  The airport, the place, the hospital, camper, house... it is a blast to play with.  Coupled with our "bucket of ponies" and some of the other few toys we still have, Sarah and I had an awesome afternoon together.

Grace happens

This morning, when it was still pitch black outside, I walked to the back porch, fleece on, and took in what the week had been, and mentally prepared myself for what was going to be a challenging day.  Breathing in the cold, fresh air, I stood, alone, and enjoyed watching the beginnings of the sunrise. 

The morning seemed, in advance, a mountain to scale, not knowing how high we would climb, or if we would need to descent before reaching the peak.  In any high stakes meeting where people are counting on me, I do feel the weight of the world on my shoulders.  I knew we had the right evidence and that I had produced high-quality documents.  Without resolution, today could have lead to a not very fun week after Thanksgiving for many people.

The meeting was painful only in the sense that some of the people there did not want to be there and seemed so uncomfortable.  But, folks needed to hear me out, and did so respectfully.  Afterwards, we needed to hear them, and did so respectfully.

In a moment of grace, it became clear we were both looking for the same thing.

It makes me happy to know a student will have a chance to heal and learn;  I was able to play a small role in making that happen and that is a great "paycheck", the  thank you from a grateful mom.

Sitting here in the calm, feeling confident, I am chatting with my son who randomly gives me kisses on the top of my head, enjoying some leisurely discussion with my daughter, and even snuggling up with the cat.  Tomorrow, I'm taking a day off from work and going to do something nice for myself.   A hike sounds like just what the doctor ordered, or maybe just a walk around Horn Pond.  Later, my teenager can meet a potential new friend and bond over social justice issues and a love of animals and all things not mainstream.

I am so very grateful for my friends, my children, and my village.  Furthermore, I am grateful that I get to do work I love and *maybe* change kids' lives along the way.

Guest sib post by E (11)

      As you may recall from my earlier post I said that A and I aren't getting along. But a lot of things have changed since then. Andrew and I get along very well now. I probably spoke to soon, tomorrow he might hate me, you never know. Even if he does hate me tomorrow I will love him just as much as I always have. 
     I don't like to say he has Autism because Autism can mean so many different things, so I like to say he has "Andrewism". "Andrewism" can make our life very challenging but very rewarding at the same time. He might scream all the time but he is one of the smartest kids I know.

     A's Savant skills have made him the smartest kid I know. If you tell him the year and day you were born he will tell you the day of the week you were born. Did I mention this was he was 5. In the end A is the only brother I have and I wouldn't love him any more if he didn't have Autism.       


-by Emily, Age 11
      

The public meltdown

This afternoon, I almost had one.  But, alas, it was my son's meltdown that I reference.  A trip to get what was supposed to be a 5 minute haircut turned into a near-total catastrophe.  The only thing that redeemed the experience was the fact that Andrew did end up with much shorter hair.  I won't be mentioning to him how handsome I think he looks.  I don't want to give the event any more attention than it's already had.

We've gone to the same hair stylist for A for almost a decade.  We love Anita.  I would drive twelve hours to see her.  The patience she exhibits, coupled with her tremendous skill with a pair of scissors, make her a favorite of many of my autism mom friends.  Her friendly demeanor with all kids make her a favorite of moms of completely typically developing kids.  Did I mention we love her?

Armed with two ABA therapists, the process went as it has 50% of the time A has ever gotten his hair cut.  He hates how it feels.  Unlike girly-girls like me who love trips to the hairdresser for the scalp massage during the shampoo alone, the experience of someone touching his head, and the sensations from the buzzer (only for "clean-up"),  make A miserable.

It's different when your kiddo is 5 years old and taking a fit in public.  A was little, his meltdowns less intense, and he was cute even when upset. Mostly, it's not entirely uncommon for a 5 year old to melt down in public.   Of course, people stared and many along this road made snide comments, which stung no matter how much I wished that hurt away.

It's an entirely different experience when your autistic child is 12, two inches taller than you, and weighs 140 pounds.  No one thinks he is cute.   Everyone thinks he is crazy.  I feel like people are staring at me (well, many are at least glancing at me wondering what the hell is going on), having decided I am an terrible-awful-no good-very bad mother.  I love my son.  That doesn't translate to "I love autism" and understand what to do all the time.  I wish I did. I wish all the money we and others raise for autism research felt like it was helping; that anything was getting better for treatments or that anyone was close to finding the root cause which cold lead to a cure.  Days like this, or those when he runs out of the house screaming or melting down because all the circuits in his brain can't and don't connect, make me sad.

He got through today.  I got through it, too.  Anita is an angel.  Andrew will need, and get, another haircut in 10-12 weeks.  And so the story goes, again and again and again...

The most special of bonds: E and S's stories

E and A celebrating his 11th birthday

I have written about A and his autism spectrum disorder dozens if not hundreds of times over the years, his accomplishments and challenges, school placements, the medications tried with enormous amounts of both trepidation and hope, quirky obsessions and downright mind-boggling behaviors, savant-like skills, and how autism as a whole effects our family.  This blog contains a whole lot of "the good, the bad, and the ugly" about how Andrew lives with autism, as well as what being an autism mom means for me.

What has never been included here, however, is how A's special needs have affected his siblings.  A's three sisters all had the opportunity to write down their thoughts, the younger two decided to accept the challenge.

They say things better than I ever could, through the lenses of children who perhaps have lost a bit of their childhoods because of their brother, despite the fact they love him very, very much.  Keep reading for a honest portrayal of being the "sib" of a brother with autism, written by those who will be around long after I am gone and hopefully still love him.

E's story:
        My brother A is very special to me.  My brother and I had a great relationship and would do everything together, at one point I was the only one he liked and the only one that could calm him down. As we grew up I started realizing that Andrew and I had changed and he would embarrass me in front of my friends. Today A always says how much he hates me and calls me "Buggy ". Every day is a challenge with A. His Autism has changed our family but at the same time I couldn't imagine him with out Autism.  Even though A says he hates me I will always love him.
       As A's sister I have seen him seen him go through different phases and seen him grow up. He has always loved weather and wants to be meteorologist. He loved having the chance to meet the local news station's weather man who he now stays in touch with. A has also had an obsession to Blue's Clues several times and made a board game about it.  
      A used to go to our cat Maddie when he was mad and would say "Hi Maddie, with the pretty pink paws." He also has a huge obsession with Build-A-Bears and he talks to them.  All 30 something bears are very loved and you can tell if you look at them. In the end A is very special to me. 

Written by EE, age 10.5 

S's story:


Having a brother with autism is very hard.  It is hard for many reasons, including:

• He is very noisy
• He can't control his feelings
• He goes through difficult phases

But there are good things about having a brother like A:

• He is very smart
• He likes Build-A-Bear and I can use his toys' clothes for mine
• He can be very sweet

One reason why it is hard for me to live with A is that it sometimes feels like he gets all the stuff and I don't get as much.  Another reason is that since he goes through phases very quickly he might want to play with you and want to do things with you one day, and the next he may seem to hate you and even want you to live in a different country (he has actually said that).  And your plans can always have to change because he may want something and it is hard for my parents to solve the problem.


I was assigned to write a "Concrete Poem" for school, which is a poem in which you combine art with the careful arrangement of words- in, around, or used to create the image.  I wrote about having a brother with autism.  This is my poem:

My brother has autism.

It is hard for some.

It can make you feel glum.

It can be very hard to overcome.

Although life can change every day,

And sometimes you don't get your way,

Yet, with my family I want to stay.

There are reasons that it is good and bad to have a brother with autism. But it is not one of the hardest things to do and it can be overcome.

Written by S, age 9 (dictated)

IEP: A first

IEP Reflection: Today, I went to my first special education team meeting ever with my own child (now age 14) in attendance. I am so very proud of her for expressing her feelings so eloquently.  She was brave and honest. 

There is much thoughtful and hard work to be done, but the goals are attainable. 

#hope

ed. note:  maybe next time, this mom will be able to fully take off her special education advocate hat and be "just the mom".  i'm learning how to let others support me in this process.  i'm stubborn.  thankfully, my friends are more stubborn.

"Why do I have autism?"

"When did I get autism?"

"Why do I have autism?"

"Why did you become an advocate? Because of me?"

Talk about a way to make a mother's heart burst with pride, swell with joy, and ache with sadness filled with hope, all at once.  The real, meaningful conversation about autism, completely child-directed, was an hour of some of the most intense connection I have experienced with my son.

When your child for so long has spent a great deal of time living in his own world, a place which feels safe to him, where weather and bears, calendars and Presidents,  make him happy, you wonder if he even could understand that he has this neurological disorder and what it means.

I learned tonight a lot about what it means to A.  He couldn't quite grasp that he was diagnosed with autism when he was two, but that he has always had it.  I explained it was part of who he was, kind of like the color of his skin.  In a gentle and simple way, I told Andrew that having autism didn't mean there was something wrong with him; only that it affects how he learns and feels.  We talked about how kids with autism sometimes have a hard time talking to other kids and that school can be hard if there are too crowded and if teachers don't help kids in the best ways for the student.

He took it all in.  Maybe because he is finally in a place where he can access these feelings and questions (having a night alone with Mom helped, too).  He asked for some hugs, seemed to seek out and enjoy hugging his big stuffed bear, he seemed at peace with what had been said.  He also seemed to understand it.

Finally, the question about my work, since he often overhears me say I chose to do this work because of him.  I explained that I learned a lot about helping kids go to the right school for them because of him.

For the record, this is his story. We tried the school district's way, then we augmented it, subsequently determined it was not working, enrolled him in a therapeutic private school, pulled him from that school because of unnecessary restraint, brought him back to the public school setting with a 1:1 aide, and, fast forward to the recent past, tried a school with ABA methodology which wasn't the right fit, and, finally, found a program which seems pretty perfectly tailored to his unique needs.

Then

Now

I went to trainings, took classes, went back to school, learned from and studied under seasoned special educators and advocates, and realized somewhere along the way that not only was I good at both advocating for children and training parents and providers, but that I loved it.  I always tell my children that helping kids is the best job in the world.  Tonight, I told my son he, along with his sisters, is my inspiration, and that I was so proud of him.

Perhaps I am deluding myself into believing he "gets" more than he does.  All I know is that my child with autism did something I never thought he was capable of doing.  He surprised me & brought me  joy.  Tonight, I am at peace with autism, and I am so in love with, and in awe of, my little boy.

With his bears, which make him happy

Ed. note:  Please leave a comment and let me know you've "visited".  Welcome to our chaotic, but loving and fun, corner of the world...

An Andrew Note

Hi,Friends

Nice Email (about mommy)

Mommy is very nice and she takes care of me
Mommy and Carol are very nice ladies are are the brown advocates and they take the best care of Me
Mommy and Carol do snuggles and hug me
Mommy and Carol are the best people and prettiest and nicest people

Mommy and Carol say we love you
Mommys favorite boy is me
Carol calls mommy her daughter
Mommy and Carol keep me safe
They get me good stuff
Mommy loves the bears and so as carol
Is this a great email?
Mommy and Carol help kids and love kids
Mommy and Carol think moms are special

Love,
Andrew

Ed. note: Andrew enjoys writing ridiculously cute emails to friends.  Typically, they are about food.  Sometimes, they involve places.  This one involves his favorite bear, Carol.  He doesn't seem to believe the "real story" I bought her at Filene's @ the Burlington Mall right after Christmas 2004 for the low price of $5.99.  In Andrew-world, she's a 63 year old "special education advocate-helper" who works for/with me.  It's silly and goofy, as Andrew's play skills fall many younger below his chronological age.   But, man, does this make me smile.  He is thriving, and feels happy and feels safe here.  That is worth all the challenges. 

I love you, Andrew!

Just a day

It's the eve of my birthday.  When you are a grown-up not celebrating a birthday ending in a "0", it is just another day.  That is, it's meaningless unless you have a calendar-obsessed autistic kiddo.  Heck, being a single mom offers few opportunities for celebration for most of us, so if my kids want to celebrate me and make an attempt to bake a cake or write cute cards, I'll take it.

For the past decade, there have been homemade cards from the kids, dinners filled with good food and better drinks to go along with the good friends, and even some generous gifts.   I'll let myself indulge in remembering a meaningful and loving birthday five years ago.   (There have been the duds, as well, those being the nights I spent home alone).  For many years, my group of girlfriends celebrated everyone's special day with a dinner out.  In 2000, my preemie baby girl was still in the hospital on September 30th.  My dear friends decided I needed some cheering up and took me out to dinner, with the night ending with a visit to the NICU. 

A meal I don't have to cook and a margarita attached to good friends is the plan for tomorrow night.  IF the (brave) sitter shows up, IF the kids don't freak out when she gets here, IF Andrew's autism doesn't blow it all.

My ex-husband has been taunting me on a frequent basis in recent weeks.  A zinger he sent a few days ago: "I am truly sorry you are lonely".  I laughed.  For what it's worth, he always stunk at birthdays, anyways.  Maybe he gave up porn and other women for the day in honor of my birthday :-)  In reality, I have more important things to focus my energies and time on than the man who hurt me, hurt our children, and finally hurt me in front of our children.

Tomorrow morning, I begin my birth day (which is not even my real birthday, but that is a whole other story) entering the world of civilized warfare that special education dispute resolution is.  I'll connect with a dear friend whose life mirrors mine, have lunch with my surrogate "pseudo-mom", check the mailbox for cards and not be disappointed the one I want to be there won't be, and hug my kids more than they want to be hugged.

Maybe the day will include good chocolate, good wine, and a Yankee Candle.  I know it will include being around the people I love the most: Julia, Andrew, Emily, and Sarah.  That, along with seeing dear friends, is really the best gift in the world.