Tag Archives: memoir about autism

Ryan’s greatest hits

March 30 2003: my second child, Ryan Nicholas came into the world, peeing and pooping all over my insides. He has not stopped surprising me from that moment on. I have been reflecting on his pronounced antics and came up a few highlights. Thirteen years would not seem enough time to procure a ‘greatest hits’, but this kid has such a range of tricks, there are enough to share for now.

The Cake Burglar

This moment stands out so clearly because it was one of the first time there would be no doubting the wheels were turning in his head. (This is straight from my book, but it took a long time to craft those words, so why reinvent?) Upon giving him chocolate cake for the first time…

“Ryan’s expression was one of pure astonishment. I could almost read his mind: What the hell have you kept this from me? I laughed, knowing he was amazed at how delicious cake was….and he absolutely inhaled his piece…I set him on the chair….he hovered on his knees, looking intently at his grandma’s plate. Grandma is a dainty, polite eater—completely opposite of my children and me….Ryan tapped Grandma on the shoulder and said, “Gama—wook,” as he pointed over her shoulder toward the television. She turned around to see what he was pointing at, and in one fast motion, he swiped her cake and shoved it into his mouth…He just grinned sideways and began to look to other plates.”

Observant Manners

When he was almost five, he was intrigued with watching us in the kitchen, and pouring all types of liquid. His language had slowly returned and one morning he was right by my side as I walked around the kitchen. He sat himself up on the counter looked me in the eye (which was a rarity at that time) and asked: “Mom, wine or coffee?” I had him repeat the question, because I wanted to be sure what he was asking, and was relishing in interaction and didn’t want it to end. I looked at my watch and in a reluctant stoic voice I said, “well…it’s morning, so probably coffee.” He shrugged and helped me make the coffee-well at least pour the water in. The remarkable part of this (aside from me turning down wine) is he was perceptive enough to know those were/are my two favorite beverages; and he had learned to be considerate and ask which I wanted to partake in.

Crowd control

When he was in first grade (the first time) his dear teacher tried so hard to make him successful with good behaviors. After many days of receiving a red card (which those not familiar with the ‘behavior card system’ red indicates a bad day) he had finally earned a green card. I unknowingly arrived at the moment she announced this to the class, perhaps hoping the support of his peers would encourage further good behavior. The entire class cheered loudly; I would have thought this ruckus would have been upsetting to him. But he stood there soaking in the cheers, grinning widely. Slowly he put his hands up to quiet the crowd and said, “Childrens, childrens, that’s enut (enough).” Of course this way to address a crowd came from a movie, but how surprisingly appropriate for the moment.

Charlie Brown

As he grew, he began to like dressing up for Halloween. After three years in a row of being Sponge Bob, we asked what he wanted to be for Halloween. Not really expecting a different answer, Ryan replied he wanted to be Charlie Brown. Thrilled for a change, we searched for the trademark yellow striped shirt and brown shorts. But as he was watching “The Great Pumpkin” one evening, I pointed to Charlie Browns sad, too many-holed, ghost costume; and said “Do you want to wear this for Halloween?” He replied with an emphatic ‘yes’. Jenna was kind enough to volunteer to paint black circles all over a white bed sheet—in mimic of Charlie’s costume (which said black circles are still present on my garage floor today). We measured his real eyeholes and his costume was ready. Halloween evening we placed the sheet over his head, and he ran outside to the flower planter, grabbed something we couldn’t see and then strode over to our then-teenage neighbor and said: “I got a rock.” For Ryan to remember the line that Charlie Brown uses after each disappointing house in “The Great Pumpkin”, and then act it out so suavely, was quite simply, hysterical.

Not the Donald

When I was laid up after surgery two years ago, my younger sister came to help me with the kids. Upon my instruction, she took Ryan to his favorite place to eat: In and Out Burger. After spending the morning with her in my car, he apparently had enough. He refused to eat his cheeseburger and then loudly told her in the middle of the restaurant she wasn’t his mom, stop driving his mom’s car and added for effect (in a very Trump-esque way) “you are fired!” I’m not entirely sure where he got that reference, and as horribly humiliating it was to my sister, it is lasting comedy to us. He then decided when my older sister came for her shift a few days later that whatever she would say to him he would reply sternly “Not you!” and look away from her.  At least she didn’t’ get fired.

I have a Ryan-montage in my head, acting out his favorite scenes that I wish I could put on a screen: from Bruce Almighty (“Excuse me, do you have a spoon?”); or from Antz (“Who the hell is that?”); or Dumb and Dumber (“It’s okay, I’m a limo driver!); or Austin Powers (“Yeah Baby!”).  The show could go on and on…and if you could see it, you too would hold your sides in hilarity.

There will undoubtedly be many more moments Ryan surprises us and the rest of the world with his wit and humor. I can only marvel at  where he’s come from and continue wishing for the wonder of where he is going.

Happy 13th, little man.

 

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Change…

Change is hard. It usually involves having to do something differently than you have been accustomed to; like trying to eat healthy after a long holiday season filled with gluttony.

For most people on the spectrum, change can be quite difficult.  I used to think it was my son’s kryptonite. But, as he’s matured, and with proper prompting he has done better with new situations. Even last minute surprises are not as problematic as when he was a toddler and we were first figuring out how to deal with his outbursts.

Now, instead of lashing out at unexpected variations in his day, I see him turning internally and spending more time alone. I think this is a typical pre-teen reaction to transformations. And I think it’s good he is trying to process. Yet, I recall Jenna dealing with “teenage things” and asking me questions or turning to her social circle to figure out the world. Ryan doesn’t do this. He doesn’t ask me the types of questions Jenna did, like: “Why won’t she talk to me, I don’t know what I did wrong?” Or: “Why did she move away, she was my best friend?”

Ryan is more a big picture guy. The things that affect how he moves through his day matter most. Like, losing his therapist that had been with him since he was four. Nothing bad happened to her (thankfully), she just moved on to a new job. But this change is big. I would consider it big for anyone who had worked side by side with someone for eight years, but for Ryan is could potentially be catastrophic. His whole apple cart could turn over. Luckily she coordinated her departure to coincide with the holiday break from school; so he had a good transition period. And we prompted him like crazy that she wouldn’t be there when he went back.

Not to say he didn’t grieve for the loss of her, but he didn’t ever ask me why she left or inquire when she would come back, like Jenna may have asked. Maybe I didn’t give him the chance because I was so afraid of what the change would do to him that I kept talking about it. Maybe he didn’t have the time to worry because I continually reassured him it would be okay. Either way, I did notice him spending a lot more time in his room.

During that same school break, also came his orthodontic braces. For any kid having a metal bracket attached on each tooth is no picnic. There are many sensations in your mouth at once: the thickness of the brackets and how they tear at your cheeks and the tightness the metal causes on all of your teeth just to name a few. Coincidentally, Jenna was getting hers off the exact same day Ryan’s came on—the irony of that was not lost on any of us. But, I anticipated she would be a good visual to show the final result. Plus I thought I needed to tell him something tangible that the braces would do, so I told him we needed to make his teeth strong so he could continue to eat his favorite snack. He did great while getting the braces on: sat nicely and stayed calm–I was so proud. It wasn’t until later that evening when I realized how long he had been in his room alone when he came to me and said. “Okay mom, I’m ready for my new teeth.” As if the braces could work that fast.

Every time he tried to eat he practically cried from the pain. Ryan is a tough kid, so for him to say something hurts, it must be really bad. Needless to say, he didn’t want to eat much. And I heard the phrase “You have to take these braces off” a lot. He spent more time alone in his room those first few days. Processing: I assumed. Then, it was time to go back to school and he pepped up. I hoped he had found his way to deal with the braces. Ryan is one of the very few kids who wants to go back to school. He loves the routine, the schedules and the predictability. Even minus his life-long friend, he went back willingly. Even with the new braces inserted in his face, he was ready to roll.

Well, that’s enough change for now—I thought. Of course it wasn’t. We received notice that his school is closing. Let those words sink in for a minute. His school is closing at the end of the year.

For those of you who read my book, there is a considerable amount of time I discuss finding a school for Ryan when the public school was no longer an option for us. There are only so many schools in our immediate area and the continual ‘no’s’ I received were just one painful slap in the face after another. So the thought of finding another place that could fit all our needs, is to say the least, daunting.

More change… Will he handle it? Can he handle it?

He has heard us say the school is closing, but I don’t think he gets the finality of it. I don’t think I get it yet either. And I’m not ready to prime him for this change. Again.

So, what we do now is: pray; keep our fingers crossed; throw coins in a fountain; blow on dandelions; and send all the positive “vibes” we can to people in charge of Ryan’s school to keep it going…somehow.

I can keep the faith, and make wishes—that is what got me this far. But, sometimes I just really hate change.

 

 

 

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Subject of a Zoom Lens

Below is a link to a guest blog I wrote on Portland Book Review.  And if I am hitting you about the head with promoting my book…I do apologize. Just skip on by if you are over it…

http://portlandbookreview.com/2015/11/the-subject-of-a-zoom-lens-by-leeandra-chergey/

 

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Pre-Pub Purgatory

Something about the changing of summer to fall causes me to reflect on the year and often my life as a whole. Maybe it’s the quiet of the house with the ankle biters at school, the temperature changes, or just a realization of time passing. But this is the season I find myself getting the most nostalgic. I get almost antsy for the next season and phase of my life.

For the past ten years or so, this time period usually reflects on what grade my kids are in and what developmental milestones they are making. Prior to that, my thoughts would have wandered back to my own time in school. I am one of those weird people who actually liked school, studying and reading; moving forward in some scholarly pursuit. I loved the fall because it meant school.

Since September creeped onto my calendar, I have been feeling restless, and more anxious than usual this time of year.   After again looking at the calendar today, I realized it’s the doldrums I’m in right now: the in-between-ness of waiting. Waiting for the day my book finally comes out.

There is a lot the publisher and our community of writers has prepared me for in this writing journey, but I don’t recall much mention of this time. The pre-publication purgatory I am trapped in. I am not one to want to rush time; it already goes too fast and I am usually wishing to slow it down.   However, November 10, 2015 seems like it is a century away.

Sure, I’m busy with everyday life, raising two kids, work, and of course all the final marketing details that go into publicizing a book. But waiting for the actual day when my story is available (for anyone interested to read) is about to drive me mad.

Maybe it’s the no longer writing it that’s making the waiting seem longer. When you spend years, many years, writing and editing your own words, it becomes like a child you have created. Just like the last weeks of pregnancy, I was delirious waiting to see my baby. Right now, my “baby” is sitting in a computer in a warehouse on east coast about to be printed and bound. It’s in its final gestation trimester, and it feels like I can see each second on the clock.

There is nothing more I’m allowed to add to the book, the publisher has given me my final proof—and it’s done. Yet I cant’ help feeling like there was more I could have written about my family’s journey with autism. Certainly there were more anecdotes to be told and more victories to share. But if I wanted my story published I had to stop writing and start…waiting.

Like I washed up on a deserted island, I feel I wasn’t properly prepared for this time. I knew how hard the writing and editing was. I lived it long enough that no explanation was necessary. I was slightly surprised in all the steps required to properly market a book, yet felt I had prepared accordingly (and still am walking that part of the journey). I won’t lie, the review process still proves to be shocking and humbling, but again, I felt I have skidded by with that one too. It’s this time. Now. Eight weeks, and six days. One thousand four hundred eighty eight hours left until 11/10/15.

My husband, Dan, and I did not found out the sex of either of our children. After the first child, I came up with three reasons why we didn’t find out: actually three jobs for the man during the pregnancy/birth.

1) Plant the seed (the most important job)

2) Announce the sex when the baby is finally born (a very exciting moment for my husband)

3) Cut the chord (that took some coercing, but he did it.)

The way I saw it, if you take one of those jobs you would eliminate 33.33% of their work. It was kind of my obligation to keep Dan properly employed in future ventures. And I also found out after baby #1, how the ‘not knowing’ kept me going in the long days of the last trimester. Not knowing just their sex, but what they would look like, or what they would be like. Actually that was the real torture.

If I could get through that waiting, especially on bed rest with Ryan, I can keep my chin up and get through this waiting. After all, I already know what my book/baby looks like and what it is like…

I think what I just realized writing this: is it’s time to make another baby, I mean book. Relax, Dan. I meant book.

Maybe the pre-pub waiting period won’t be as bad the second time around.

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This too is temporary

Most parents don’t want to dwell on their children’s deficits.  We want to focus on their strengths and celebrate their victories.  I believe this to be true whether our children are typical or unique.  But in the realm of autism or any special need, sometimes you have to put your cheer leading hat aside and truly acknowledge where your child’s weak points are.  It is a necessary evil if you are going to help them improve.  Being brutally honest is not my strong point, but one I have to turn to more than I like.   I was always taught to focus on the positive of every situation or person.  I strive for this daily and although I’m not perfect, I do believe it is one of my strong points.

To my own fault, I have to fight hard to see the negatives in Ryan or Jenna.  It’s like my positive blinders are made of Teflon. Like my heart won’t let me see them in anything but a glow of perfection.  Because they are perfect to me.  But, when a situation arises and I force myself to come face to face with a shortcoming, it hits me hard.  To admit to myself either one of them can’t do something or won’t be able to for a long time, literally breaks my heart.

I know I am not alone in these feelings.  I  need to remind myself of that, but there are moments in juggling the life of an autistic child, I feel desperately alone.  Even though Dan is an amazing partner, and I have a fantastic support system; it’s just my nature to take things so deeply.  To a dark place where hurt lives and makes me feel so heavy.  I try not to visit that place often, but sometimes I can’t avoid it.  Not when it comes to my kids.  Perhaps it’s because they were once physically part of me that they remain hard wired to my heart.

I will come out of it.  I will put my positive hat back on, and get my boxing gloves out.  But just for a day, I will allow my heart to be heavy and grieve a little for the things my sweet boy isn’t able to do…for now.    I know we will work to change these things.  We always find a way to bring him up, and he always finds a way to surprise us with what he can do.

I will never give up on either of my children and even when I have to face a blip on their map of life, they are still perfect to me.

As a wise man once told me as I was crying upon his departure, “This too is temporary”.

 

 

 

 

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Traumatic memories

Post traumatic stress syndrome (PTSD) develops after a person is exposed to one or more distressing events like injury, assault, or the threat of death.  It’s often seen in veterans after returning from war.  I feel it an injustice trying to compare what I’ve been through with Ryan with any of the horrors my dad experienced in the war.  But there are times I reflect on Ryan’s days in public school and feel my emotions stir up quickly.  My pulse races, and I begin to shake with anger at the hardships he endured.  I relive those moments as if they have just happened, much like a person with PTSD.

What separates me, is the ability to stop those memories quickly.  Mainly from the pure satisfaction of the choices we made for him; the glorious exhale of relief that I no longer worry about him after dropping him at school.  I don’t fret over how he will behave.  I am not concerned about an outburst that could send him over the edge.  I don’t agonize over his safety—will he run off campus again?  All the emotions I literally lost sleep over, are no longer my concern.  Because he is in capable hands.  I cannot speak for the school district, as to why they would not allow our aides into the school.  As much as it makes me scratch my head with wonder, I refocus my energy and bask in the glow of my boy who is now happy to go to school.  A boy who asks why there isn’t school on a holiday.  A boy who gets ready on his own without prompts.  Who would have guessed that four years ago he would one day enjoy school like he does?

When he was in first grade (for the first time) I was laying out items for school after the long Thanksgiving break.  On weekends and holidays, I put the kid’s backpacks in the hall closet so we don’t trip over them.  As I brought them out to put in the kitchen, my silent child (this was at a time when he didn’t show a lot of emotion nor did he speak very much) stared wide eyed at his back pack, as if it was on fire, and burst into tears.  He began to say loudly, “No school, Mommy, back pack back in closet. Back pack in closet!”

I stared at him in pure shock.  I had no idea he associated the back packs in the closet with no school.  I didn’t realize he even paid attention.  Apparently that was a big visual sign to him.  I pulled him to me and wrapped him in my arms as he cried, over and over, “No school, Mommy.”   Soon, I was in tears with him.

What was I doing to him sending him there?

How can I send him back after he begged not to go?

PTSD may be too strong a word for my painful recollections, but  memories of your child begging not to go to school when he could barely ask for milk,  evoke a physical and emotional response as fresh as the minute it happened.

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The Special Hat

When your child has been giving the title “special needs” you quickly learn  the word “special” by itself isn’t  a compliment.  Even though we are forced to use it in conjunction with “needs” to define our child at times, I sort of hate the word by itself.  Kind of like in the movie “Elf” when Buddy realizes he’s not good at ‘elf-things’ and his elf supervisor tells him he’s not a cotton headed ninny muggings, He’s just ‘special’.  The frown on Buddy’s face is how I feel when I hear that word too.

An annual carnival near our house has a “free day” for the special needs kids in the area.  Ryan’s preschool teacher gave me the flyer, and I thought it would be fun to take him.  The second we pulled on to the grounds, he started whining. This was before he could completely talk again, so I learned to interpret the level of whining.  This wasn’t a code blue, but he was agitated.   I was afraid he might put up a fight to go in.  Luckily, I brought our kid wagon, thinking he would be more willing to go if he was sitting versus walking.  He let me put him in and my thoughts were buoyed that this might be a good time.

As we approached the gate, young teenagers were enthusiastically handing something out.  They put it in my hands and I saw it was a hat.  Not the best looking hat, but ‘what the heck?’ I thought.  I turned it around to see that it said in big, white, curvy letters: “I’m Special.”

Seriously? 

I stared at it and then up at the kids, who I now saw were all wearing the same hat.  I must have looked like an idiot staring, mouth open at them, but I truly was in awe.  Obviously they thought it was cute, because they were all wearing one.  Some had it sideways, some backwards; some kept it flat billed, as teenagers do.  I handed it back and said a little bit too roughly, “No thanks.” The kid looked at me puzzled and actually said: “No lady, its okay, its free for the special kids.”

The special kids…how very offensive this felt.  As if they were personally pointing at each and every child in a mocking way. And in case your child doesn’t have an outwardly obvious disorder, like autism, here’s a hat to make sure everyone knows!

I know it wasn’t their fault that some thoughtless genius had a great idea to make an in insensitive hat for all the kids with issues. But, I was so overwhelmed with emotions of resentment and anger; I literally broke out in red blotches.  I stormed away.  I didn’t have the words to explain to this young person how completely inconsiderate the hat was.

I tried to imagine the board meeting where a ‘chairperson’ would have suggested making this hat.  I had been in plenty of planning meetings like that.  What amazed me was that everyone on the fair committee would’ve had to agree on this hat.  Did no one at that meeting have any association with special needs kids?  Did they really think this was a good thing? Did no one think it would offend me as much as it did?

My mood threatened to spoil the day, but watching Ryan at the petting zoo made it easy to brush away temporarily.  I tried not to notice all the handicapped kids with the offensive hats on.  I didn’t look at the other parents, aides and teachers and wonder why they let their kids wear such blasphemy.

Maybe I’m too sensitive, I thought.

When we got in the car later, one of the hats was in the bottom of the wagon.  I guessed one of the teens handed it to Ryan, because I made sure they got mine back.   I took it inside to show Dan and talk to him about the inhumanity of this hat.

I stared at the happy shaped words  and in my mind I saw Buddy’s the Elf’s face again.  I frowned too at the irony of that damn word.

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Babysitters and the Universe

Allowing someone outside your family to care for your children, is frightening aspect for most parents. Finding the right person is whole other ball of wax entirely.  I was put through the ringer in my quest for the right person for Ryan and Jenna.  I say “I”, because it didn’t take long to realize when it was time to look for a baby sitter the task was left up to me.   Actually, I think Dan thought they magically appeared, because when I mentioned needing someone, he dryly remarked, “well, just handle it”.  As if I could wiggle my nose and conjure them up.  As if it was that easy to recruit, screen and accept someone to care for your most precious assets on earth.

Once Ryan started home therapy, I needed someone to be there so I could schedule time to work.  Luckily, my mother in law offered one day a week to stay with him.  I was grateful for that one day.  So that left me three as I could easily spend one day a week working from home.  But three days is still kind of daunting.

I first utilized the “respite” babysitter and quickly realized it wasn’t going to work. (Respite is a service the county offers children with special needs for childcare; you get a monthly allowance of hours for “relief” i.e. time to do errands, work, or even go on a date with your spouse.) I used them because their people had experience with special needs kids.  No disrespect to this respite caregiver, she was a lovely lady, but she had her plate full with her own family, and talked to me a lot about all that was going on.  I felt like I was taking her away from them.  I had my own mommy guilt and couldn’t handle hers too.

I went on the next candidate they recommended.  She coincidentally was labeled special needs herself, due to an accident at birth.  I thought she would be good in a sense that maybe she could relate to him and perhaps him to her, on a different level. But I soon saw she wasn’t mature enough to handle my kids; As she demonstrated to me by picking Ryan up by his arms and literally throwing him five feet up in the air and on to the couch as he screamed bloody murder.  She said he liked being thrown.  The terror in his face told me otherwise.  Ugh. Next.

So the search began, on my own.  One of the brokers at my office mentioned to me finding her perfect assistant.  She had written down exactly what she was looking for and “put it out to the universe”.  The next week she found that perfect person, who wasn’t even looking for a job.  She assured me if you are specific, the universe will bring it to you.

What could it hurt, I thought? It basically just a thorough job description for my perfect babysitter.  After the first two sitters, I had plenty of ideas of what I didn’t want.  So, I spent an hour or so writing out exactly what I  was seeking from her, yes, I specifically wrote down a ‘female’.  I decided no detail was too small.  Handing over my ‘ideal’ and very long description to Dan, I waited for him to be impressed.  He shrugged and looked blankly at me.  I know he was probably thinking something smug like I should have done that from the start.  Men. 

Now what? Was the universe going to deliver her to my door?  How long did I have to wait?

I did a sort of prayer/mini-meditation with my list of traits; the only way I knew how to inform the universe.  Just in case it didn’t actually read my list. And then I got on the phone.  I felt the more I “put it out there” with real people, the better chance I had at an actual answer.  After a few calls, I hit the jackpot.  One of the teachers at Ryan’s former preschool was leaving the school to go to a local college.  I knew who she was and I knew she had good ju-ju about her.  But, my friend told me, she already had a job lined up.  Crap.  I decided to call her anyway, maybe she had a friend or something.

After I told her our situation, she said she wasn’t too hot on the commute she was going to have with this other family, and being that we lived right up the street from her she wanted to come talk to us.  Just to see.  I don’t think I have to explain how we won her over with our wit and charm.  It’s pretty obvious-right? I mean, it is us.

Looking back at the time “Shelly” was with us, I realized a few things.  First how hard it was to find a good babysitter, so be specific and just ask.  Second, it’s even harder keeping one around, we purely got lucky to have her for over four years.  Lastly, the best part about having  a great sitter is the peace of mind they give you.  They free up your mind to do work, errands, or go on a date, if you truly feel like your kids are in good hands.  Hence the real definition of respite to me.

So, the universe delivered.

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Support

I wrote this on Thursday, but as a wicked stomach flu attacked I am just now able to post. So for clarification when I say ‘yesterday’ I mean Wednesday.  And since I haven’t said it in awhile…thanks to all those still sharing and reading.  We are slowly getting more readers.

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Women are typically drawn to other women for one outstanding reason: support.  I’m not saying that men aren’t supportive, but on the average, most men are “fixers” and women are “supporters”.  When something happens in a woman’s life, one of her first calls will be to a close female—weather related or not. Because women listen, and usually are sympathetic to each other.  Most female species do not try to fix it unless the other woman asks.

When Ryan was diagnosed and after I broke the news to my sisters, my closest female supporters, I felt lost.  I knew they would listen and sustain me, but I needed something more: understanding.  At the time, I felt it just simply wasn’t something they could provide because they didn’t have a child with autism—they couldn’t understand.  I sought out a support group that didn’t add up to the pieces I was looking for.  This was so disappointing as I truly felt a support group would pull all the ends together for me.  And make me feel less like a drowning victim. But I gave up on looking and just tried to mull about on my own.  As time went by, I slowly, started to find comfort in talking to Dr. Hunter’s staff (they were in my house every day, so I had lots of access).   They were able to make me feel like what was happening or what he was doing was part of the process and at some point talking to them became enough. I may not have had fellow mothers to talk to, but it filled a void.

Now that I’ve said all that I’m going to retract a bit.  As I was reminded yesterday, there is still nothing like sharing with a fellow ‘aussie’ mother the similarities in your life.  There is a sensation of being held in tender hands when you talk about your child and the other person wells up with tears.  Recognition i.e. understanding is the underlining difference in talking to a professional and a mother.  As Jenna McCarthy wrote in her book about her autistic son, she believes there is a special place in heaven for mothers of autistic children.  I believe it also goes for so many other mothers, but as I happen to be the mother of an autistic child and considering the amazing mother I met with yesterday, I certainly hope there is a roped off room with a VIP entrance for us.  I wish for a place that all the heartache we suffered on earth will be exchanged with cocktails, music and dancing.  And laughing.  Lots of laughing.

For now, I raise my pen (or later, wine) to all the mothers of special needs kids battling today on earth for their babies.  I especially want my fellow warrior mom to know, and she knows who she is, that she will have front row VIP parking, and table service for all she’s had to endure.  My heart is so full for her struggles, and yet she keeps going.  What else is she to do? She’s a mom.

So, now that I’m nearly beside myself in tears, I will finally get to my point.  No matter what your struggles in life: find support, find listeners, find understanding.  It truly is what gets us through.

(End note: I recently was introduced to a wonderful group of women who meet for support.  I have only been able to join them a few times, but I am thrilled to know I finally found a group.  They know who they are and I look forward to more sharing moments in the future.)

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#54

“I don’t know how we are going to make it through the actual day without totally losing it.” My voice cracks as I turn to Lusia, one of the other moms in our CCD Class.  I am welling up with tears but fighting the full break down.  She nods and I can see she tears in her eyes, I think she is trying not to cry as well.

“Okay boys and girls, come sit on the floor.” Ms. Sally says loudly over the ruckus.  Ryan and the other six children are running amuck in the classroom.  This is usually the way the Special Ed CCD class starts, a game of chase around the room.  Ryan loves this part the best.

These kids have been together for over a year and actually like each other.  As much as Ryan usually puts a verbal barrage not to come, once he’s here he will join in for most of the class.  Ms. Sally has done such a great job with this class.  Each week, I am always surprised what she pulls off.

When she first brought us all together and told us her plan, I remember being cautiously optimistic at what seemed like a truly ambitious plan:

“We will meet every other week, and continue through the summer. It’s not the usual way of CCD but I think it’s important they have continuity and plus we have more ground to cover. Everyone okay with that?” She looks at each of us crammed around the table.

“So, they are…allowed…to take the communion?”  I asked and immediately felt bad for sounding like someone who did not understand what it’s like to have a child with special needs.  In my meager defense, I assumed Ryan would be much older by the time he was able to understand how sacred receiving the bread is.  No one seemed bothered by my question as I look around a little red-faced.   A few are nodding and looking intently at Ms. Sally for an answer.

“The Church’s stance is as long as they are able to understand the bread is not regular food, they can receive Holy Communion.  So when we feel they are able to understand that we can make a decision when the service will be.” She looks around us all again. “Sound good?”

There is a cacophony of nods and happy sounding “yes’” in agreement.  I am nodding like a bobble head.  I truly did not believe this would happen.

“Ryan, Ms. Sue said to sit down.” I say as I walk towards him.  He is running ahead of the children with a huge smile on his face.  I hate to break it up, but we have let them get a little over stimulated.  “Let’s go, stop running and sit down.” Miraculously a few children listen and come sit in front of her wheely chair.  This takes away Ryan’s fun of being the leader, so he reluctantly follows.

“Okay let’s start with the sign of the cross.” Ms. Sally says after they all are seated.

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