New pictures (Andrew)

Thank you Kristin Chalmers for your awesome pictures!

Domesticity disaster

I'm a sucker for stuffed mushrooms.  They the first thing I order when I go out to a restaurant with them on the menu.  Could I make them? No.

Which brings me to what it is I "can" cook with talent and ease.  That list is pretty limited: meatloaf (recipe-less amazingly), roasted sweet potatoes, and green bean casserole, homemade meatballs when I have the time and patience, omelettes with lots of goodies in them, one or two kinds of chicken casseroles, grilled cheese sandwiches, and tacos. The list gets even more pathetic from here on in: English muffin pizzas, noodles I just have to boil, flavored noodles from a package, vegetables that just get steamed (most often in a microwave), frozen pizza, Perdue or Bell and Evans chicken nuggets, BLT's, and the cinnamon rolls and cookies that come out of a tube.  (On the plus side, I make awesome ketchup smiley-faces to go with the aforementioned chicken nuggets/tenders/strips).  I don't even own a spice rack and have 4 or 5 bottles of various spices in the cabinet. That's it.

Thank goodness my children are fans of fresh produce. I should grow apple and banana trees. They like to snack on cucumbers slices, Andrew would eat tomatoes by the dozen if I let him. Hummus and pita chips are a favorite, and I can wash, cut up, wrap in foil with some garlic and butter or olive oil, grilled veges like a pro.  Did I mention all my kids like salad?  Emily eats spinach leaves not under duress.

Some mothers have domestic talents.  I don't think I possess them in any area, although I find doing laundry cathartic and having an empty sink before I go to bed (thanks Andrea!) comforting.

Since I work a lot from home, I have improved my de-cluttering skills ten-fold.  Trash/recycling day is my most favorite day of the week.  My vacuum cleaner is slowly dying after just a year,  perhaps thanks to our cat and the fact half the people who come over are allergic to her, or at least her hair.

Is it too late to take those finishing school classes that teach young women how to be spectacular homemakers?  Probably 15 or 20 years too late.  Yet, my children have survived and we are overall happy. Maybe I need to buy myself a crockpot?

Sarah's Mother's Day "newspaper" delivery

Just when you wonder if you're a good mom who is making an imprint in your child's life, he or she comes up with something like this.  Sarah wrote this all by herself, she printed it out, glued it onto this morning's Sunday Globe with Kim's help, and brought it to me with a beautiful bouquet of flowers, a sweet card, and a croissant.

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.  Nor is there an relationship with the other "mother" who adopted and then abandoned me.  I am so blessed to have a few very special women in my life who have helped fill the void.  The experience of being a real part of a church family contributes to the joy of this day....  so many lovely people, so much un-judging (ie: no one seems to care that I am divorced), caring during a scary and uncertain time.

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 (a skill I was lacking in).  I learned to lean on God during the times I almost lost Julia (she was diagnosed with mitochondrial disorder as a 3 month old).  I have both leaned on God and been very angry at Her during the ups ad downs of raising a child with Autism.  I was so angry with Her when I mourned for the child I lost nearly 4 years ago, almost alone.    I have no idea what God's plan may be for my life and what other journeys She sees me embarking upon.  Whatever they are, I will never lose sight of the fact that my children are more important than anything else.  The village they belong to loves them and Sarah's letter tells me I must be doing *something* right.

Happy Mother's Day!

Horn Pond and The Red Sox

With church in-between the two, we had a very busy day.  The Red Sox game was a surprise, and I am grateful for the tickets.  By some miracle, we found free on-street parking.  In a nail-biter, the Sox prevailed over the Mariners.  It was the kids' first Red Sox game and we had a blast, albeit the cool temperatures.  Days which are perfect in almost every way don't happen often, but, when they do, they cleanse my soul.

Yes, it actually does take a village to raise a child

Amy Poehler's speech, thanking Time magazine for naming her one of the year's top 100 most influential people, starts out funny and quickly gets serious:

But tonight, I’m genuinely very humbled and honored to be part of this evening, so I would like to take my remaining minute to um … I have thought very hard and long about what has influenced me over the past couple of years, and since I have been at this dinner in 2008, I have given birth to two boys and I’ve left Saturday Night Live and I started my own TV show, and it’s been a crazy couple of years, and I thought who besides Madam Secretary Clinton and Lorne Michaels have influenced me? And it was the women who helped me take care of my children. It is Jackie Johnson from Trinidad and it is Dawa Chodon from Tibet, who come to my house and help me raise my children. And for you working women who are out there tonight who get to do what you get to do because there are wonderful people who help you at home, I would like to take a moment to thank those people, some of whom are watching their children right now, while you’re at this event. Those are people who love your children as much as you do, and who inspire them and influence them and on behalf of every sister and mother and person who stands in your kitchen and helps you love your child, I say thank you and I celebrate you tonight.

I love seeing a successful woman, particularly a celebrity, acknowledging and thanking the people who help her look after her children. More women need to do this. More men need to do this.

(via Crooked House)

Happy Birthday, S

We're celebrating Miss S's birthday today!  My "baby" is 9 years old, only one year away from double-digits.

S is a unique, wonderful mix of funny, vibrant, intense, & joyful. She has created the most unique dance that we have dubbed "the Sarah dance".  Being keenly aware that she is indeed #4, Sarah fights for attention without apology. She makes everyone around her laugh.  She also gives 110% to everything-- and is fighting like crazy to overcome some challenges in writing and reading. By far the most imaginative of my kids, she stretches this creativity to make the most funky and neat projects and creations.

I know she hurts sometimes and wishes for her family to be whole.  However, she has a lot of love from me (and from her dad).  There are many special friends in her life who love her.  Maybe it's the bond of having nursed her for so long (ok, well long for my babies, I consider 7 months a *really* long time), but she and I share a very special connection, too.

I know I have the option of having another baby, but today I just want to think about Little Miss S and remember that the day she was born was one of the happiest days of my life (ok, minus the lack of an immediate post-delivery morphine drip at MAH).  Sharing her birth day with my dear friend that evening in person, and with others on the phone, are all fond memories.   She brings so much love and light into our family's world, I can't imagine my life without her in it.   Happy 9th Birthday, S.

(Cut and pasted from last year's birthday post)

Just some bowling-- putting autism in its place

Today, Andrew bowled a strike.  It was with bumpers in place and with a candlepin ball, but it made him so very happy. Truthfully,  I have never bowled a strike so I am impressed :-)

Earlier this week, Andrew asked why his big sister refused to forgive him after he apologized to her for invading her privacy.  He is learning what empathy is. At age 11.5, living with autism, he is meeting the social and emotional milestones of a child much younger. And I couldn't be more proud of him.

I remember the day he first said "I love you" back to me like it was yesterday.  He was 5.  I was tucking him into his top bunk bed and said, as I did every day, "I love you Andrew".  His little voice said "I love you Mommy".  It's cliche, I was so happy to hear those three little words from him for the first time, I cried after I left the room. I was both amazed and humbled by the power of his words, after years of speech therapy and the methodical teaching we know works best for children with autism.

As I look at this boy/young man, I feel blessed to be his mom.  I feel in both ways angry at and bad for his autism.  We play the "two steps forward, one step back" game, always have and always will.  Do I love him in a different way than I love my daughters? Truthfully, yes. Do I worry about him and what his future will hold more? Yes.  Am I forever grateful he has three sisters who I trust will always be there to help him reach his goals far into the future when I can no longer care for him? Yes, he may drive them crazy at times, but they are fiercely protective of their brother.

Today, bowling made Andrew happy and he felt successful. Taking it one day at a time is all we can do when the "enemy" (the A word is what Sarah calls it) is so powerful and takes hold at erratic times and makes things so damn hard for him, and for our family.  So, we carry on and celebrate the small victories.  Every night before bed I tell him, "I love you, Andrew".  His response: "I love you, Mom".  That is a gift I hold close to my heart.

A special weekend with a special girl

This whirlwind weekend ended with a very special (and incredibly rare) Mom and Sarah day.  When you have four children, time alone with any of them is precious, but Sarah is probably the one kid who really needs the 1:1 attention, extra love, and hugs.

We started the day with a lovely walk around Horn Pond. I pushed strollers with all my kids in them around the Pond, dozens if not hundreds of times. Sarah and I talked about the memories she had as a toddler and preschooler of the pond: the ducks, the rock that looks like a big chair that I have dozens of pictures of the kids and their friends sitting on throughout the years.  There is a lion sculpture Sarah used to like to climb on.  No longer does she climb it, but she wanted to go see it.  Sadly, the statue of an Indian where the path goes into the woods was stolen a while back, but where it stood is some hilly terrain which Sarah wanted to climb and walk parallel to the paved path.  My friend Carol ran by and said hello there, reminding me of one the the reasons I most love Horn Pond, seeing old friends. There is never a trip, except for the rare early morning one, where I don't run into someone I know and like.

As we approached the halfway point, one of the trails veered off to the right towards the path to the top of Horn Pond Mountain. The kids and I have climbed that hill dozens of times, but there are lots of memories there, not all good, so we managed to keep walking around the Pond, checking out the ducks and swans. (And, come on, who the heck named it Horn Pond Mountain? It's a little hill).

Sarah felt accomplished after we finished our walk.  We decided to take advantage of our small party size and head to Tu Y Yo, our most favorite brunch locale.  We talked, we laughed, and we enjoyed some really yummy food (chilaquiles, sopes, and flautas).  She confided her fears, her hopes, and her dreams, and I shared some of mine as well.

The only bump in the road of the day was that our appointment to get our nails done was a small catastrophe.  No matter what time you book, they are never on time, and today they really weren't good to Sarah (typically, they are great to kids).  The only upside of the experience was running into an old friend from high school (ironically, this was the second time I had seen her in 15 years, both times at this nail salon), and catching up.

When it was time for our time to be over (shared custody can be a bitch), there were lots of tears from my baby girl, about to turn 9 on April 23rd.  In turn, my eyes watered a bit, too.  I can hardly believe it has been nearly a decade since I gave birth to this amazing little girl who is full of spunk and has enough personality to star in a variety show.  I am very blessed to have had this time with her (which came a day after a small, but super-fun birthday party playing laser tag).

I love you, Sarah Johanna.

Happy Birthday Party S

We had a fabulous, small birthday celebration with two friends from church in honor of S's 9th birthday at Laser Craze. As much fun was had by the adults as the kids and all my daughters had a blast. We are fortunate to have a small group of wonderful friends and seeing Sarah so happy makes my heart smile.


S struggles mightily with self-confidence and seeing her so alive was enough to remind me that all the special times and events she gets to be a part of help her self-esteem. School is not going well for her, she is just a sponge for attention.

Having Andrew not there was a relief, as much as it breaks my heart a little to know all the kids can't
celebrate together.  (He had a great time at the zoo.)


All in all, what a lovely day!

Sunday fun: "Christmas and Cookies"

We had a fabulous day with our dear friends, hanging out, sharing a meal, baking and decorating cookies, and just spending some precious time together. It's rare to get all of us in the same place and these friends mean the world to me.  They have been there through the good, the bad, the ugly, and now the good again.  I am blessed to not have to look too far to find friends who are not of the fair-weather variety and who support and love me and my children. 

Taking a break from "Just Dance" on the Wii

Leila and her big friend Sarah, both pretty in pink

Wanda was taking the picture... and Julia and Andrew were MIA.

Target on a Saturday and other musings...

Standing in line at Target on a Saturday afternoon may be a tradition as American as apple pie.  The girls were behaving and all was pleasant. That is, until the moronic woman in front of us decided she needed to start going through her bulging envelope of coupons instead of putting her items on the conveyor belt.  She only had 15 minutes of waiting beforehand to get her things in order, but, no, she refused to start checking out until she pulled out 8 coupons.  By then, both the cashier and I asked her to please move on. And she yelled at both of us.

The intended purpose of the trip was to return a defective iPad we had bought a few weeks ago. With my limited energy getting ready for surgery on Thursday, perhaps we could have found 100 other less taxing things to do on a Saturday afternoon.

I had gone skiing the other day. It was fun- until my entire midsection started screaming with pain. I will be happy to get this nerve blocker implanted and be more comfortable.

The children are being, well, typical siblings. They love each other one moment and hate each other the next, with a whole lot more hating than loving nowadays.  Andrew has become re-obsessed with one of his Build a Bears and is driving everyone nuts with it.  Emily has entered teenagedom a few years too early.  Sarah is frustrated by all that's going on. And, Julia, is, well, Julia.

We are looking forward to seeing our best friends and having our annual post-Christmas dinner and cookie making marathon.  Here's to some wonderful memories being made today.

Winter thoughts redux

This evening, as I moved my car to prepare for the impending blizzard, I was struck by how it actually feels like snow is in the air.  My son and his babysitter took a trip to Build A Bear Workshop where he created "Colorful Bear" (bear #40ish).  I had stocked up on Dan Dan noodles early this afternoon, driving 15 miles to get them. Chili sauce, plain rice noodles, sichuan pickles, and a small amount of ground pork= heaven.  There is a Red Box close to my house and "The Social Network" was available so that's my exciting activity for the night.  It seems an ironic movie to be watching given recent events.  Facebook, emails, blogging... they are something we all partake in.  My teenager has introduced me to a few other social networking sites, and I am far too old and uncool to know what MySpace offers.

I think about the reality of things I have experienced in my life, especially over the past five years.  I was there, my memory is not impaired from remembering the good, the bad, and the downright ugly.  Today, my family is pretty close to intact, my friends are amazing, the support system for our children is strong.  As added bonuses, there have been victories for clients at work in recent days.

My "terrible, horrible, no good, very bad day" moment came when reading for the first time Andrew's neuropyschological evaluation.  It unsettled me and left me sobbing.  For years,  I thought my kid might have been one of the few to "lose the (autism) diagnosis".  Alas, that is not to be.  It's a given that testing is hard for him and he doesn't perform well, but scoring under the 1st percentile on most testing tools shocked even me.  Autism sucks.  However,  now the adults can try to figure out what it is he needs to be a successful learner.

Tomorrow, the Christmas tree will come down as we find things to amuse ourselves with during the snowstorm.  I'll go skiing in the Fells with friends when the baby-sitter comes in the afternoon, and a new beginning will be had.   I will hold my little boy tight tonight, gently stroke my cat while she sits here on my lap, and take in the beautiful scent of the burning "Fresh Balsam" candle.   Life is good and I am indeed blessed.  Lynda, Whitey, and perhaps my cousin Denise (who left this world far too early two years ago today) were watching out for me today.

It has been a certifiably awful few weeks. The stress has taunted me, daring me to fall apart. By giving into that depression, it would make my family disintegrate, my autistic son's world turned upside down.  It amazes me that anyone would knowingly contribute to the sadness and confusion of a little boy who lives every day with autism, working so hard to fit into a neuro-typical world, by hurting the most important person in the world to him- his mom.  I am so grateful to those people who have supported my little family and who know the truth, have known it for years as they lived it alongside me and my kids, even if it is ugly.  Domestic violence is rarely pretty.  I didn't do a good job listening to my friends for a long time; now I know better. I love you all.

]

My teenager.

A visit to Channel 7

Andrew and his friend Emma had a fabulous time visiting Channel 7 (WHDH-TV), hanging out with Andrew's meteorologist buddy Jeremy Reiner, and talking to Dylan Dreyer, Adam Williams, Anne Allred, and Steve Cooper. (To show my age, I was excited to see Andy Hiller, the long-time political reporter). 

Everyone was wonderful to the kids, and it was definitely the experience of a lifetime! 

Do we listen to autism?

As parents, it's our job to listen to our kids. We don't always have to agree with what they say, but we have a responsibility to hear them out.  Today, Andrew's autism got the better of him and I tried to keep pushing him. In all my attempts to calm him, or make him re-focus, in the end, he ended up having a major tantrum and crying.  When I was tucking him into bed, he was able to verbalize that he was sorry and said "I had a bad day, Mom, I was just tired". The tears came as soon as I turned off the light and walked out, my head spinning wondering why I did such a poor job respecting the communication he was attempting to have with me.

Autism doesn't reason well.  Things are very black and white.  Things either make sense to a kid, or they don't.  Because of this rigidity, he misses out on so much.  Even things he likes, like the Wii, he has meltdowns over if he doesn't do as well as he'd like, or if his Wii "me" doesn't look perfect. It's very sad to witness.

I think about all the missed weeks and evenings when I should have been supporting him and have been more present.  Instead, I had entered the dating world.  Would it have made a difference? I have no idea.  What I do know is this all feels helpless sometimes and autism for my boy-man is more challenging than ever.

Blessings

This Thanksgiving has been one of the most interesting days of my life.  I am very thankful for my children/family and friends.  The last thing I would ever think would/could/should happen did. Life is indeed strange.  Now to try to work off all the mashed potatoes, yams, sausage stuffing, squash, green bean casserole and THE most amazing sweet potato pie ever.

Happy Thanksgiving from our family to yours!

What is the face of autism?

Many thanks to Kristin Chalmers (www.kristinchalmersphoto.com) for these great pictures, taken for her "Broad Spectrum" project.

Giving thanks

As the holiday where everyone celebrates being thankful approaches, it's a good reminder that giving thanks shouldn't be reserved for one day a year.  My family's Thanksgiving for the past 6 or 7 years has involved spending time with some of our "chosen family", dear friends and their parents and siblings.  With all the unrest and sadness in too many parts of the world, some as close as our own backyards, the fact we can have a plentiful meal to enjoy with people we love is something very special.

Blessings in my life that I am very thankful for include:

-My children who make me laugh, make my heart smile, and who bring so much joy to my life.  Despite the challenges (like autism), these four young people constantly remind me of all that is good.  Unconsciously, they bring joy and fulfilling hugs and love to my soul.

-Friends who constantly practice patience and enormous amounts of kindness.

-Good, and improved,  health & a health care system and insurance which provides quality and affordable care for my family.

-A job where I am entrusted by parents to help obtain appropriate services for their children with disabilities.  It's humbling to know people not only pay me, but they trust me, to join them on their special education journeys.

-Teachers and therapists who don't get paid in funds nearly enough for the amazing work they do with all the children, especially Andrew.  Their "other" paychecks I surmise come from seeing kids thrive thanks to their patient and competent work.

-Peace, love, and chocolate

God and whatever other powers who are out there have been watching over us. Our angels (Lynda, of that I am certain, is one of them) smiled in heaven on my family. I am certain they all played roles in second chances in my life this past year.


What are you thankful for?

An exciting weather day

My son has an ear-to-ear grin. His email buddy and special friend, WHDH meteorologist Jeremy Reiner, came to his school today to talk about the weather.  The first time Andrew met Jeremy, during a 2007 visit to Channel 7, was probably the most exciting hour of his life.

I am particularly touched by the fact that a meteorologist on a major Boston station is willing to come to Andrew's school.  This is because Andrew attends a small special education school for children with moderate to severe disabilities.  They never get visits.  Unlike when Andrew was mainstreamed in a public school and I arranged for another meteorologist to come in to talk to the students, kids with more significant disabilities who are not included with typical peers, usually don't get the same opportunities for enrichment.

Not only did Jeremy say yes when I asked him, he did so without hesitating.  All I know is this is making my kid's day, if not year. It is awesome to see Andrew so happy! If I could only get him to smile with his eyes open when getting his picture taken...

Fall ... over too fast

Today was the day to get outside and gather up all the leaves which had fallen before the snow that is predicted for tomorrow comes. Raking and then bagging leaves is back-breaking work, but you feel like you are accomplishing something.  The single moms of New England do this by ourselves (who needs men?).   In my corner of the world, we also did some fall cleaning and re-arranging as we got a new sofa.

Walking around Horn Pond has always been something I have enjoyed.   Sometimes, it's with the kids. There have been countless laps pushing a stroller, countless visits to the Lion stone sculpture.  In addition, on many lonely mornings in years past, I would walk the Pond and then "climb" Horn Pond Mountain (a very tiny mountain) and sit, sometimes for hours.  The beautiful scenery, and the fact its a place memories have been made, makes me overlook the visually un-asthetic occasional beer bottle or other teenager- left item.  Sometimes, you just want a safe place to think, maybe even to quietly cry.  When you wear your heart on your sleeve, like I had tended to do, it's easy for it to get broken and fall into pieces. 

One of the things I loved about being married, raising my kids, and having a "normal" existence, was that I had a lot of volunteer roles. Through our small church, I was responsible for the care-taking needs of the congregation.  No one *wants* to eat a casserole I, of the culinarily-challenged, have prepared.  I arranged meals for those in need, sometimes served as a listening ear when our pastor was on vacation, helped serve dinner at the local soup kitchen, many times with my kids. I loved my work with our local social service agency, coordinating the "Wish Tree" for local children in need.  Helping at my kids' school through the PTO or SpedPac was second nature.  I have always cared, an effect perhaps of being an abandoned orphan back in India.  It was second nature to help when someone needed help, or to send a card (my friends call me the "Hallmark Lady"), or listen when someone needed an ear.

It never occurred to me that all the time and effort spent helping others could reasonably be construed as taking time away from my own family.  I loved my kids more than anything, my marriage however was not very strong.  Add two kids with significant special needs (plus a preemie in the middle) and we were doomed.

I love the fall. It's a time of reflection, a time to accept the past and move forward learning from the past. I thank God every day for my son, strangely for the fact his autism maybe doesn't allow him to say much and that his understanding is pretty impaired.  It must be in some ways a gift not to have to feel the emotions the rest of us do.  What he does say, most of the time, is echolalic. "I love you Mommy. I will love you when you are 42.  Do you know how much Carol and Chloe love you?".   He repeats these phrases over and over again, he hugs me.  He is by far the most important male in my life.  I miss so much about what my life used to be, but I am trying to embrace all the goodness and joy in it now.

Winter is coming too soon, the fall has been rushed.  I continue on a quest for strength and peace.  Sometimes, I feel I am all the names people (especially those who shouldn't matter) have thrown at me. It's what happens when you've been in an abusive relationship- you believe everything that person says. All the good and all the bad.  You feel tempted to do things you know won't make you feel good about yourself.  It's not like I felt like that Carrie Underwood song.  It's not the raw emotion Alannis Morrisette sings about.  It is a feeling of not being good enough.  The hurt and sadness haven't completely lifted in the past 4.5 years since my ex-husband smothered me and choked me in front of our kids.  After that, I let myself be loved by someone else. In truth, I loved him back with all my heart.  With him, it was about emotional control (and he was far from emotionally stable).   He wanted me to break friendships. The one most important to me, he eventually succeeded in destroying.  My kids lost their friends thanks to him.  Men who promise the world, want whatever you can physically offer, and then discard you when you no longer are of use to them, should all be put on a small island in the South Pacific. 

Some things that help me are long walks, good thoughts, and accepting love and joy from those around me.  I think I'll put on Toy Story 3 for Andrew and me.  There's got to be nothing nicer than cuddling up with my little boy, watching a wonderful movie, and maybe eating some popcorn, too.  A perfect fall evening, indeed.

Meeting autism halfway

Tomorrow, I go for the very professionally-named "Parent Feedback Session" with the two highly respected neuro-psychologists who have been working with my kid.  They will discuss the hours of testing, record review, and parent input they've been given and present to me a picture of how A thinks.  This isn't even like the parent-teacher conference you go to when your 11 year old kid has been bringing home A's and B's, or to complain to the teacher about your kid  negotiating with you for phone privileges in the evenings because they have friends who are calling.  For my eleven year old, there is a certain element of dread.   I don't want to hear what the doctors have to say because it is depressing.

Arguably, autism has been a part of A since birth.  However, for years, with successful interventions, he was doing as well as could be expected.  He may not have had friends in the typical sense, but other kids, from school and church and certainly his sisters, loved him and accepted him for the quirky kid he was.  He was enrolled in a high-quality school program, off to speech and occupational therapy after school once a week, attending gym classes and swimming classes (we have fond memories of Mr. David from the Woburn YMCA), and going to play therapy with a peer or a sister.  There had been a girl in his class every year who nurtured him: Thank you April, Kaylee, and Kristin.  People loved A, included him in birthday party invitations, came to his birthday parties, and played with him.  He was just "one of the students" in his elementary school.

Then, he moved schools and arguably his rates of academic and social success started to slip.  He stopped being able to learn most things.  The new school didn't have the right tools to help support him.  He didn't have friends. When he misbehaved, they sent him home.  In a collective nutshell, they didn't help him.

Which all leaves us, three years and a whole lot of knowledge later about who Andrew is, trying to figure out how to turn everything around. I'm an advocate, I do this for a living. Let me tell you, it's a hell of a lot harder when it is your own kid.  I know the graphs are going to show regression and that makes me ANGRY.  Nothing like a school district who should have known better, and having the testing showing Andrew was not making progress there.  The bright side is he somewhere else now, no longer are there incompetent people to "advocate" for or "teach" him.

Mostly, what A needs is love and hugs and gentle care, care which needs to be firm a lot of the time.  Our lives are highly structured, designed around autism and its quirks.  I know all of this.  I just am scared to know the data: the numbers.  Will my kid test as mentally retarded?   In some ways, data is boring and meaningless when compared to an actual child.  In other ways, a lot of what will be said will guide me as to how to best advocate for A. What kind of school will he go to? Will he ever be able to go back to inclusion with success?  Will he ever want to be friends with other kids? Play baseball, or talk meteorology, with peers?

Autism is no crueler than many other disabilities. Some kids have it a lot worse. I get that. What I don't get is why the change in his developmental trajectory.  He was going to Sunday School with a helper (an "A's Angel"- thank you Lynda for that term), he was participating in typical peer activities. Now, he just wants to stay close to home. He hates his grandparents and one of his sisters. He doesn't have a church.

Please send some good karma tomorrow as the adults talk about what's going on with A and figure out some ways to help him as we move forward.  Maybe that is meeting autism halfway- not embracing it, but not ignoring it, either.  Just living, sometimes very sadly, with it.