Tag Archives: autism and the family

A Marathon

“It’s a marathon, not a sprint.”  This is a quote from Richard who said that to me one day many years ago.  At the time, we were leaving the office of one of the many doctors we had taken Emma to.  Those were the days when I still fully expected someone to produce the “secret thing” that would cure her.  Like some sort of closed, clandestine group, that if I just knew the secret password, Emma would be allowed to walk past the door labeled “autistic” and enter the one labeled “Neuro-typical” for better or worse.

I had a brief moment during my adolescence when I ran the mile, while my friends were running the 50 or 100 yard dash or sitting on the sidelines, munching on potato chips, I was doggedly doing laps around the quarter mile track at our local school.  I would set a pace for myself, not so fast that I was immediately out of breath, but not too slow that I was able to carry on a conversation.  And I’d stick to it.  Determinedly, often with my head down, listening to my breath, in, out, in, out.  Some days every step was a slog, as though I were wearing cement filled sneakers, my breath labored, every muscle ached, I would think about stopping before I’d hit the mile mark, but other days were bliss.  As a teenager I ran longer distances. I kept running for years just to experience those days when it all felt easy and right.

Just breathe.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Nic & Emma

This morning I told Emma she had to take a shower and wash her hair.

“Just Emma.  Bye-bye Mommy,” Emma said as she ran into the bathroom, closing the door firmly behind her.

“No wait, Em.  I’m just going to supervise.  You need to rinse all the shampoo out of your hair, otherwise we have to wash it all over again.”

From behind the closed bathroom door I could hear her say, “No Mommy!  Emma do it!  Emma do it!”

This is great, I thought.  She’s at an age where she needs privacy, all developmentally appropriate.

Later Emma joined me in the kitchen where Nic had just appeared, hair wet and sticking straight up in the air, as he too had just washed his hair.

“Nice,” I said.

“What?”

“Your hair.  You might want to run a brush through it, Nic.”

Nic rolled his eyes and sat at the dining room table listening to who knows what on his ipod.

“Here Em.  You have to brush your hair.”  I handed her the hair brush.   “And you’re next Nic.”

Nic either didn’t hear me or pretended not to hear me.  Either way there was no response.

“Hey Nic!” I said again in a louder voice.

“Huh?”

“Nic.  Your hair is sticking up.  You need to brush it.”

Nicky!  You need to brush it!” Emma parroted.

Nic ignored both of us.

“Nicky!”  Emma said loudly.

“Emma!  Be quiet!”  Nic shouted with irritation.

“YOU HAVE TO BE QUIET!”  Emma echoed.

“EMMA!”  Nic shouted back.

“Nicky!  Stop talking!”  Emma yelled.

Nic caught me trying not to smile and said, “What?”

“Nothing.”

“Why are you smiling?”  he demanded.

“Nope.  No smiling.”

“Mom!  You’re totally smiling.  Why are you smiling?”  Nic punched me.

“Ow!  Nic!   You just punched your mother!”

“Nicky!”  Emma shot over on her scooter and thrust the hair brush at him.

“Mom she’s torturing me!”

“Torturing?  Seriously?”

Emma then began to try and brush Nic’s hair.

“Oh my god Mom!  She’s torturing me.  Make her stop!”  he said, as Emma attempted to brush Nic’s snarled hair.  ”Ouch!  She’s hurting me!”  Nic said with feigned pain.  He held his head between his hands and pretended he was in agony.

“Okay Em.  Give Nic the brush.  He’ll brush his own hair,” I told her.

“Emma do it,” she insisted.

“No Emma.  Seriously.  I’ll do it,” Nic said, grabbing the brush from her.

Emma began laughing.  ”I want to brush Nicky’s hair.”

“No Em.  You brush your own hair,” I said.

“Already did brush hair,”  Emma said indignantly.  ”Now it’s Nicky’s turn,” she said before racing off on her scooter.

The diet update –  I spoke with Emma’s physician about the diet yesterday.  Since Emma did not test intolerant for gluten and because we’ve seen no significant change in over six weeks, we are putting gluten back into her diet.  This morning Emma ate Cheerios with rice milk.

“Well that should decrease the anxiety,” Richard commented when he saw the box of cheerios on the counter.

“Do you think she felt a lot of anxiety?”

“I meant yours,” he said.

“Oh.”

For more on Emma’s journey through a childhood of autism, go to:    www.Emma’s Hope Book.com

What They Don’t Tell You

Here are some things you will not find in your research on autism:

You will not learn how this diagnosis will affect your marriage or other members of your family.  You will not be told how it may fundamentally alter your perceptions of what is “normal”, how it may change your view of human beings, how it can force you to question small talk and why we behave the way we do, how it will transform your outlook on life, how it will change you, how your life and everything you assumed to be true, is no longer what you thought.

Having a child with autism may cause you to feel things you never dreamed possible.  You may know moments of joy and moments of despair you could not have imagined.  You may find yourself going to untold lengths in the hope of helping your child.  You may feel distracted, unable to concentrate.  Your work and career may suffer.  You may learn what it is to be sleep deprived.  You will come to know what it means to feel desperation.  You will know sorrow in a way no one can prepare you for.  You will know happiness in a way no one can prepare you for.  Sometimes you may feel both sorrow and happiness within the same day, within the same hour, within the same minute.

You may spend money you do not have on yet another treatment, yet another doctor, yet another specialist, yet another therapy, yet another intervention, all the while rationalizing that if it helps, it will all be worth it.  You may contemplate doing things you would have scoffed at before your child was diagnosed.  You may find yourself doing things that defy logic and have no medical basis.  You may listen to implausible, anecdotal stories and think – we will try that next.  You may dream your child is speaking to you in complex, beautifully self aware and revealing sentences.  You may wake from those dreams believing for a few seconds they were real and not a dream.  You will pray that you might dream again.  You will welcome sleep, as you never believed possible.  You may ache with sadness because your child is crying and in pain and your presence brings them no solace.  You may question every maternal instinct you have.

You may feel ecstasy from being hugged, unprompted.  You may feel the exquisite joy from having your child reach for you, ask for you, call for you.  You may know the joy that comes with seeing your child work so hard at something that does not come easily to them.  You may celebrate when they use the correct pronoun, even though they are no longer a toddler, when they learn to get dressed on their own, drink from a cup, say hello to you without being asked or simply acknowledge your presence.  You may feel a gratitude you would not have believed possible.  You may cry from happiness when they say a word, any word, even if you are the only person who can understand what the word is.  You will know what it is to appreciate commonplace things – eye contact, the correct use of the words “me”, “you” and “I”, physical contact initiated by your child, a word, any word spoken.

You will feel a fierce love for your child that seems to come from a place that is not of this world.  You will know what it is to love unconditionally and you will understand what that really means.

For more on Emma’s journey through a childhood of autism, go to:   www.Emma’sHopeBook.com

The Search for GF/CF Cupcakes

Yesterday we received a call from Emma’s school because she was hysterical and couldn’t calm down.  Evidently a child in her class had a birthday and the parent sent in cupcakes, which Emma couldn’t eat.  There are few things Emma loves more than a birthday celebration and cupcakes are an integral part of that.  So when Emma wasn’t allowed to eat the cupcakes, she was beside herself.  Eventually she was able to calm down, but it took awhile.

I was with a client when the call came in and couldn’t speak with her, but told the school I would make cupcakes with her when she returned home.  (I have made at least four batches of cupcakes to date, none which she will actually eat.  She and Joe made a batch – she ate two right away and a third the following day, then refused to touch them again.)  But yesterday I found my old tried and true recipe for cupcakes.  Emma has always loved the cupcakes from this recipe, so I substituted gluten free flours and hoped for the best.  Emma enthusiastically poured sugar into the ghee, helped whip everything together, occasionally dipping her finger into the batter and eating it – all a good sign.  I had her help me spoon the batter into the muffin tins and put the whole thing in the oven.  When they were done, beautifully fluffy and perfect looking, Emma eyed them critically before speeding away, saying nothing.

“Hey Em, look!  They look perfect.”  I held one up for inspection.

“No?”  Emma said in that questioning way of hers.

“Oh, Em.  Just taste it.”  I could see she wasn’t going to like them.

Nic came over and picked one up.  ”These look great, Mom.  Can I have one?”

I have always taken pride in my culinary skills, but Emma is one tough customer.  She did finally taste one before putting it down again and expressing her displeasure.

“I can’t believe she doesn’t like these.  They’re so good!” Nic managed to say between mouthfuls.

Ah well.  The search for a cupcake recipe Emma will enjoy continues.

For more on Emma’s journey through a childhood of autism, go to:   www.Emma’sHopeBook.com

Day 10

Riding the wave of my previous day’s success, I fully expected to come home last night to find Emma agreeable to whatever was placed on her plate.  With visions of cheerful family dinners in my mind I set about making Hollandaise Sauce (with those duck eggs and Ghee).  Making hollandaise is a meditative endeavor, I’ve learned.  I cannot carry on a conversation with someone else while preparing it.  I must be focused, attentive with a certain amount of serenity or the whole thing curdles or separates.  I didn’t have any lemons, so I used a lime instead and all went fairly well, though it wasn’t as thick as the hollandaise I usually am able to whip up.  I steamed the asparagus, cooked the salmon steaks, drizzled everything with hollandaise and called everyone to the table where upon Emma took one look at her miniscule serving and said, “No!  I don’t want to taste it.  It’s okay.  It’s okay.  Just lick it.  You have to put your finger in it to taste.  Just one bite.  Taste it.  I don’t want to taste it!  I don’t like this.”  And then she began to whimper.

It was one of those Sybil moments, with Emma scripting using her “stern” voice, then mimicking a TA at her school to take one bite, just one bite, then Emma’s own sad voice pleading and on it went.  Finally I said, “Em you have to taste it, then you can have some grapes and apple (skinned).

“Okay, okay, okay,” she said, dipping her finger into the hollandaise.  ”Taste it!”  She smelled the hollandaise, then tentatively licked her finger before looking at me with an expression of pure misery.  ”I don’t like it, Mommy.  I don’t like this.”

My family dinner a la Norman Rockwell fantasy fizzled and I felt an overwhelming desire for someone to come and feed her for a month or two – get her eating a whole variety of lovely, nutritional foods before disappearing again.

Later Nic came over to me and put his arms around me.  ”Hey Mom?”

“Yeah Nic?”

“I don’t mind this diet so much.  I still get to eat all my favorite things.”  He smiled at me.

“Oh, Nic.  That’s so nice of you.  You’ve been such a trooper with all of this.”  I gave him a hug.  ”Thanks for being such a good sport.  It means a lot to me.”

“It’s no problem, Mom.”

This morning as I made my way to my studio I thought about when we tackled Emma’s bedwetting.  We did our homework, found an alarm to alert us to when she’d peed, whereupon we rushed her to the bathroom and eventually she was out of diapers, sleeping through the night with no accidents.  All of that seems like ages ago, but in fact it was just over a year now.  It took three solid months before she learned to use the toilet without incident during the night.  I expect it will take that much time or longer for her to become accustomed to eating new and different foods.

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

A Comment

A follower of this blog wrote the following response to yesterday’s post.  I posted it here as it beautifully sums up exactly what my husband, Richard and I also feel and why we work as hard as we do with Emma.

“I think maybe this is what most parents or carers of children with autism aspire to.  Not to extinguish quirks and unique personality traits, rather to help our children function in this world, to cope, to survive, to find happiness. It is not as simple as just accepting someone as being unique when they can’t go out in public without dropping to the ground and self harming over some issue or they can’t even attend to their own most basic needs when they  become distressed, when there is an unavoidable change in routine, when they cannot even travel safely in a car or bus ( we’ve been there believe me), when they have no way to communicate their needs or to even tell a parent they are in pain or scared or hungry, when they want to reach out to a friend, but don’t know how and so are left friendless, when they struggle to eat because the food repulses them, struggle to even hold a fork or use a knife. That is not something I will accept for my children. I want more for them than that. As a mother I have had to watch my children cry in pain and be unable to hold them in my arms and give them this most basic of comfort, rather being forced to witness their anguish and left helpless. These are things that need to be changed and worked on. If that is a “cure” bring it on I say.”

I have never met the woman who wrote this comment, but we have been corresponding now for awhile.  She has two children on the spectrum, each utterly unique.  Her comments are always thoughtful and insightful.  Though we live on separate continents with several oceans between us, we have a great deal in common.  So, to you Liz – thank you for blazing a trail and sharing about it.  You have helped me more than you can know.

For more on autism and my daughter, Emma’s journey through it, go to:  www.EmmasHopeBook.com

Emma and Food

I have been keeping a chart of the new foods Emma has tried these past six days.  To date she has sampled:  pear, banana, apple, blueberry, raspberry, watermelon, honeydew melon, papaya, raisin, dried apricot, homemade granola, oatmeal with banana and raisins, chicken, (catfish, kale – totally pushing my luck last night with those two)  and the piece de resistance – vegetable frittata!  To date her favorites are watermelon, pear, banana, apple, raisin, chicken and the frittata.

I am also reading the Gut and Psychology Syndrome (GAPS) by Natasha Campbell-McBride.  It is a diet created by Dr.Campbell-McBride who “healed” her own son diagnosed with autism.  It is a daunting proposition, which requires one to forego almost all foods (saving a meat broth which one is suppose to consume every 30 minutes or so) for a few days to several weeks in order to allow the gut to heal before slowly introducing easily digested foods until eventually the child is able to eat a wide range of foods.   This diet is so draconian in the beginning, it makes going gluten and casein free look like a picnic.   Still I continue to do my research.  I guess you either have to laugh or cry.  I’m going with laughter at the moment.  Tears to follow, I’m sure.

Over the long weekend we took the children to the New York Botanical Gardens.  It was in the 80′s and gorgeous.

The Haunted Pumpkin Garden

The “Herb” Garden

As delightful and creative as these pumpkins were, Emma was much more concerned with getting on the tram that runs through the grounds of the Botanical Gardens.

“She loves various modes of transportation,” Richard observed when we finally secured four seats on the tram.

Yup.  That’s our Emma.

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

Em

Emma holds an uncanny resemblance to a fictitious children’s book character.

Okay, so we haven’t gotten the whole handstand-on-the-handlebars thing down yet, but I’m sure that’ll be next.

Merlin watches and waits.

He just cannot help himself.

Food update:  Emma ate a blueberry last night.  This morning – one blueberry, (not her favorite) a slice of apple, a slice of pear and a piece of banana!

After eating all of that she said, “No more medicine.”

I’ve got my work cut out for me.

For more on Emma’s journey through a childhood of autism and our attempts to help her, go to: www.EmmasHopeBook.com

Saturday with Em

This past weekend Richard did a bit of research and came up with a packed afternoon of things to do with the children.  Richard is the one who reads Time Out NY for Kids.  He pores over the finer details of exhibits, performances, always considering whether it will be appropriate for our neuro-typical son, Nic, but also for Emma, who has autism.  He takes into account her special needs as he peruses the various activities.  Richard is the one who reserves tickets, maps out routes, plans the schedule as only a seasoned New Yorker and caring dad can and would do.  When we went to California for my brother, Andy’s wedding, Richard put together a jam packed children’s dream vacation for two days.  Emma still talks about it.

So off we went Saturday afternoon to the West Village where we saw Cobu – a group of performers who mix Taiko Drums with American Tap dancing.   During forty-five minutes of dance, drumming and swirling costumes, Emma only once put her index finger to her lips during a rare silent moment and made a loud “SHHHHHH!” sound.  We glared at her and she then whispered, “No talking.”

After the performance we headed over to the High Line and walked toward the Chelsea Gallery district.

Whenever we passed a place that could be even remotely appropriate for sitting, Emma did just that – even when it was in unlikely places.

Our first stop was the Mary Boone gallery because of it’s unusual displays, which we thought the children might enjoy.  Emma, however, raced through pointing on her way out to one of the mannequins and shouted, “Costume,” before exiting the gallery as though she had an urgent appointment she was already late for.

Two doors down was the Gagoshian Gallery with a not-to-be-missed Richard Serra installation.

At one point Emma said, “Richard’s show.”

“Richard Serra, Em, not daddy,” I said.  To which she turned and looked at me as though I were an idiot for having felt the need to make the distinction.

“Don’t touch, Em,” I reminded her, just as she turned the corner.

On the way home Emma put her arm around her brother, Nic and the two of them made silly faces at each other.

“Hey Mom!  That’s the most she’s ever interacted with me!” Nic observed as we headed into our building.

Yup.  Everything changes.

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

Autism – Daughters (continued)

I so wanted a little girl, I so looked forward to having a little girl who would feel safe enough to confide in me, the way I have always felt able to confide in my own mother.  (I feel a great deal of gratitude for that.)  I know how fortunate I am to have an amazing mom.  I have conversations with friends who audibly groan when the subject of their own mothers come up.

“If it’s not one thing, it’s your mother,” is something I’ve heard on more than a few occasions, uttered by exasperated adult children.  The famously “bad mothers” occupy several shelves of literature, poetry, plays and movies.  We all know them by name and every few years a few more get tossed onto the pile.  Beyond enjoying the guilty deer-stuck-in-the-headlights-horror of those stories, I cannot relate to them, thankfully.

My mother taught me how to sew and macrame, (this was the 60′s & 70′s) embroider, quilt and knit.  She showed me how to bake bread, make baclava, beef wellington and a fifty layer Daubache Torte.  I think I can justifiably credit my mother for my love of design and current career.  She read stories to me at bedtime and sang songs.  I remember sitting on the vanity in her bathroom as she got dressed to go out to a party.  I thought she was the most beautiful woman I’d ever seen.  I watched her as her hair turned grey and her fingers became deformed by arthritis.  I spoke with her about the aches and pains that come with growing old.  I looked to her the way one consults a Michelin Guide in a foreign country, she has always shown me the way.

Perhaps it is the same for Emma, I cannot know.  I know she feels connected to me as I do her.  I know when she wants something and I can often understand what she’s trying to say, even when the words come out wrong.  Lately she has even run to me when she’s hurt, though more often than not, I will have to prompt her, much the way I still must remind her to – “wrap your arms around and squeeze” when she hugs.

“You have to go see the nurse!”  Emma will shout when she hurts herself.  Then she’ll hightail it into our bathroom where she knows we keep a large supply of bandaids.

“Hey, Em!  How about coming to see nurse mommy?” I’ll ask blocking her way.

“Ouch!  Emma has a boo-boo!”  Emma will tell me, wiping the tears from her eyes, but keeping her distance.  Unlike neuro-typical children who instinctively seek out the comfort of a parent when hurt, Emma will instead cry out for the school nurse or say nothing and just take care of things on her own.  Often this means returning with a half dozen bandaids applied to various parts of her body, making it difficult to know exactly which part was hurt.

I think the thing about all of this that’s perhaps most important, is, while I don’t have the relationship with Emma that I envisioned when I was pregnant with her, we do have a relationship.  It’s a different relationship than I have with my mother.  But it is a relationship and it continues to evolve.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com