Friday, June 29, 2012


Settled into a lounge chair
around a Palm Springs pool,
I sip a mid-day Corona Light,
and strike up a conversation
with another spring break family
while my eight-year-old son
completes his umpteenth lap
up the water slide
with new friends,
crashing into the pool,
only appearing at my side
for food or a towel.

I shift in my seat,
daze away from
this easy banter,
inwardly stunned
at the normalcy.

Oh, it’s shockingly different,
there is no talk
of my son’s special needs,
no drawn out drama with strangers,
telling our story of not quite autism,
nodding, oh yes, he has come so far.
There are none of the usual comments
of how they know so and so,
and have we tried this therapy?

My story was like a dear friend
who held my hand
in every new situation,
ready to explain away
my anxiety of a special boy
who might not yet look
quite up to speed.

Suddenly that part of me
has disappeared
behind a gloriously normal day
where my son beams with freedom.

That woman with her story
has packed up her facts, her fear.
She has cared for, cleaned up
years of heartache
and set me down
on this pool chair,
left alone,
to read in peace.

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Jennie Linthorst is a therapeutic writing coach and the founder of LifeSPEAKS Poetry Therapy. She works privately with men and women helping them tell their stories and heal, through reading and writing poetry and personal essays. Jennie coaches clients all across the country and around the world via phone, Skype, e-mail, in addition to in person meetings. She is the author of a book of poems, Autism Disrupted: A Mother's Journey of Hope. Her family’s story is captured in the award-winning documentary film, “Autistic-Like: Graham’s Story”.

Thursday, June 28, 2012

The Time Traveler

"I understand you're going to Cape Elizabeth this weekend," says Mrs. Bottman, the recess aide at the elementary school.

"Did Nicholas tell you that?" I ask.

"Yes," she replies, "and he is very excited."

I smile and thank Mrs. Bottman for her good wishes.

Cape Elizabeth is a lovely vacation spot on the east coast of Maine. Three years ago, we rented a house there for summer vacation.

We are not however, going there this weekend.

Nicholas loves to travel. His wanderlust is an unusual interest for a child diagnosed with Prader Willi Syndrome. Typically, our children thrive in very structured environments. They need routines and schedules to help minimize the stress of change. Unscheduled surprises and long trips can cause great anxiety for some children diagnosed with PWS.

Not so, for Nicholas.

If it were up to Nick, he would spend the entire year traveling around the world, provided of course, that our accommodations include a gas fireplace and a garage.

This makes planning vacations a little tricky since I need to be sure to book a place that has at least one of the above-mentioned amenities.

Like many special needs familes, our lifestyle is a hectic one. It is loaded with therapies, doctor appointments, hospital stays and meetings. In an effort to periodically diffuse our family stress level, we try to plan a couple getaways a year depending upon our finances.

We have traveled to places like New Hampshire, Cape Cod and coastal Maine. Nicholas fondly remembers them all. He can remember every excruciating detail, of every property, we have ever rented. In fact, he has created his own special names for each of these properties. In New Hampshire it was "the green house". Our visit to Cape Cod was in "the vanilla house" and the Maine house was dubbed by my travel-loving tot as "Cape Lizbet".

Nicholas will ask me every day if we can visit one of these homes.

Since he asks me so frequently, my standard stock answer has become...

"Soon! We will visit very soon!"

Unfortunately, the word "soon" is meaningless to Nicholas. It is an abstract concept that he does not understand. So, he uses his own positive attitude and a little wishful thinking to interpret the word "soon" to mean, this very weekend.

So, in his school conversations with students and staff, Nicholas explains excitedly how we are going to the vanilla house! When folks ask him when? He answers, "We're going on Friday."  I am certain that it is this combination of his wishful thinking and a distorted understanding of time that confuses dear Nick.

I, on the other hand, have become very accustomed to folks telling me to have a good vacation.

At first, I would painstakingly take the time to explain to the confused individual that our next vacation was not scheduled until summer and how sometimes Nicholas gets confused about the concept of time. But after daily greetings and salutations that usually begin with...

"Hey, Mrs. Peters, I understand you are going to the vanilla house?"

I found my convoluted reply to be somewhat futile.

Day after day, a different person would approach to wish me "Bon Voyage". Finally, I decided that there must be a better way to handle all of this?

After much creative thinking, I decided to stop correcting these poor misguided souls. I decided it was time to change my need to "correct" and "be precise". Instead of stressing about the silly situation, perhaps it was time to relax and have a little fun with it all.

I now try to enjoy this rather humorous scenario, making a game of trying to anticipate just who the next unsuspecting victim will be? And when the next poor soul approaches to wish me a safe and happy vacation...

I simply smile to myself and say,


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Lisa Peters blogs about the adventures of parenthood at
Come visit us to learn more about the humorous and sometimes difficult aspects of life with special needs.

Thank you for reading.

Monday, June 25, 2012

Over it.

This is my daughter getting her blood drawn. She's had it done over a hundred times and I see this look on her face nearly all of the times someone ties off her arm above the site they will stick a small (she disagrees) needle in to get blood that will tell us if her body is rejecting her transplanted kidney (hopefully it won't be). 

She and her brother get these labs drawn frequently. Enough for them to be a nuisance. She especially is upset these days that she'll have to have them forever. While my son realizes and is resigned to the fact that he'll have to have medical intervention for his entire life, it is just sinking in for her. 

Even though right after her transplant over 2 years ago I explained her new kidney wouldn't last forever and that she'd need another kidney and probably two more transplants she hadn't really understood what that meant until recently. 

Preparing the kids for what will likely happen in the future is one of our current tough challenges. 

I don't want them to be surprised about something so major as needing another kidney or their future liver transplants (yes, they know about those too).

Tonight my daughter said, "I hate that I have to go through this forever!" and I hate that it was my preparing her that brought on her sadness. 

For me, it's one of the saddest parts of parenting right now. 

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Julia Roberts blogs at Kidneys and Eyes and co-founded Support for Special Needs. She's currently sharing her daughter's story of special needs here with a favorite bear, Champerina

Wednesday, June 20, 2012

Making the Choice to be Happy

I was recently on a message board in which a debate was occurring about whether or not your child's functional level should correlate with your own personal level of happiness and satisfaction.  It was even suggested that the parents who claimed to be "happy" must have children who are, as a whole, pretty high-functioning and thus cannot relate to the struggles of parents with children with more significant needs.

I'd argue that this is a fallacy.  I know parents who have kids who are lower-functioning than Jack, but most parents I know have children who are higher-functioning or on par with Jack.  We each face issues that cause very real struggles in our lives and the degree of those issues in no way diminishes the challenges that other families see as their reality.

Rather, I think that the parents who claim to be "happy" are so because they have made the commitment to themselves to be happy.

Parenting a child with special needs isn't easy.  Even I will admit that.  When Jack was first diagnosed - really, even before that, when we first going through EI evaluations and learning the extent of Jack's delays - I felt like the sun might never shine again.  It was a dark place to be.  I remained in that dark cave of my own despair for months, certain that there was no way out.

Eventually, I discovered that it was not autism, or hypotonia, or dyspraxia, or communication delays that were causing my despair - it was me.  It was me who was allowing myself to believe that my child's special needs would take something away from my life.  There is no evidence that my child's special needs have to take away from my happiness.  I just might need to adjust my expectations and reset my dreams.

So, I made a commitment to myself.  I would not allow my child's special needs to cast a shadow over my entire life.  I will allow autism to win a day, or even a week, but autism simply cannot have my overall happiness.  It is not that the autism we experience is mild or easy to handle by any means - Jack is somewhere in the moderate range according to his developmental pediatrician - but it is that I force myself to take joy in both the little victories he makes and, when all else fails, in my own victories.

In other words, I'm gonna fake it until I make it.  I will allow myself a day here and there to give in and throw my hands up in the air, but the other days I will put on a smile, go for a run, and make myself find some joy, even if I don't feel like experiencing joy at that moment.

Even to this day, my child requires a lot of assistance with regulation, communication, and even the most basic self-care tasks.  Some days are difficult.  Some days, I wish he didn't need assistance with feeding, or that he was toilet trained, or that I could simply tell me what is wrong or what he needs.  Some days I cry.  Others, I sit in a temporary fog, blasted by the everyday realities we face.  The days when the meltdowns last for hours and I simply cannot figure out what my boy needs are the days in which I find the optimism slip.  At the end of the day, I know that I have, once again, survived the storm.  I will survive the next.  The sun will indeed rise again.

Here is the secret to happiness - don't let every moment of your life revolve around your child.  That sounds so counter-intuitive to many special needs parents - myself included - but you can take time for you while focusing on your child.

I find my sanctuary in running and writing.  I stay on a training program - right now I am training for a half-marathon - and I continuously set goals so that I can take pride in something that I am doing for myself.  Now when Jack is home, I spend every waking moment focused on him.  We do Floortime, I work on communication, or we do sensory-motor activities.  However, Jack spends a good deal of time in therapy and in special needs preschool, so it is in those times that I take some time for myself.  My house looks awful.  I haven't swept the floors in weeks.  The dust bunnies are taking on a life of their own.

I'm never going to win an award for being a domestic goddess.  I will, however, keep my sanity and a degree of satisfaction from taking time out for me.

You don't have to be a runner or a writer.  What you do need to do is what makes YOU happy, because if you have something outside of your child that gives you joy, then you will always have an element of happiness that is independent of the struggles your child may be facing at that given time.

Raising a child with special needs isn't a sprint; it's a marathon.  You need your energy to keep going.  You need elements of happiness in your life to help you keep going.  You need to believe that, regardless of the degree of your child's special needs, you are deserving of your own happiness.  Being a special needs parent does not mean that you need to sacrifice everything that you are and all that you have to give.  Believe me when I say that your child will benefit from the happiness and optimism that you radiate.

I truly believe that happiness is a conscious choice.  So, take the time you need to process your child's diagnosis in whatever way is best for you, but know during that process that the world will not always seem so dark.  Some parents will come out of the starting gates glowing with optimism and others will take much more time.  It took time for me to emerge into the light.  Take the time you need.

I promise you the following - regardless of your child's diagnosis, the sun will rise again tomorrow.  Life will continue all around you.  When you decide that you no longer want to live in that darkness, do not be afraid to go forward and seek your own happiness.  Don't look back.  You will have bad days, bad weeks, bad months, or even bad years.  I know that I do.  Once you decide to seek happiness, I can bet that you will never again enter a place of such abject darkness as that which you knew before.

So take the time for you, and do so with no guilt, no shame, and no regret.

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Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 3-year old little boy on the autism spectrum.  After her only child was diagnosed at 24-months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.

When not posting here, you can find Jeanie at her regular blog, Reinventing Mommy.  To follow more of her ramblings, like her on Facebook!

Tuesday, June 19, 2012

A Space For Everyone

Since school is out for Connor and Jer's taking a few weeks off work, it's time to really knuckle down and get started on our summer projects.  We're doing our best to slowly transform our backyard into a place that all three (soon to be four) of us can use, so it's not going to end up looking like a conventional yard.

Let's face it; the typical American backyard-- or for that matter, the typical American home-- is not exactly a friendly place for folks in wheelchairs, with limb differences or mobility issues.  That broad expanse of lawn is hard as heck to roll a chair across, and a lot of decks and patios have a couple of steps up and down.  The uneven surface of the grass is very hard on Jer's feet, and mowing the lawn is really tough for him.  So we're probably not doing our property values any good with the changes we're making, like taking out most of the lawn and replacing it with a patio space, building a deck with ramps and putting in high raised beds.  Luckily we're planning on being in this house forever, so we're not overly concerned about what we're doing to our ability to resell by making the yard more accessible for our whole family instead of just me.  The space should hopefully be pretty attractive by the time we're done, even if it's not the conventional mowed green expanse. 

Honestly it makes me a little mad that I even have to worry about that sort of thing.  Wouldn't it be so much easier if homes were built so that everyone could have full access to them, inside and out, and not just healthy young people?  As Connor gets older, there are friends of ours that it's more and more difficult to see because we can't get his wheelchair up the stairs or through doors in the house.  While I understand that older homes weren't built with accessiblity in mind and I can't expect everyone to retrofit their homes just for my family, I do get a little ticked whenever I see new houses going up that have steps up to every entrance, bedrooms all on the second floor and a tiny guest bathroom downstairs.  I just have a hard time understanding why anyone would spend all that money to build a brand new, state of the art house that they can't live in if they break a leg. 

So we'll keep plugging along in the backyard to make it available to everyone in our family, and hopefully in another six or seven years we'll have a gorgeous space back there we all can enjoy.  Maybe if we find we need to sell the house a few decades down the line, everybody else will have caught on to the idea and our kind of house and backyard won't be a liability rather than an asset. 

I sure hope so.


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You can find Jess at her blog, Connor's Song, where she writes about her daily life as a stay at home mom, military spouse and roller derby queen. 

Making Changes

Summer has arrived.  School ended on June 12 and all 3 kids are home until their varied summer activities begin in July.  Unlike the last few summers where I was desperate for the return of routine, I'm less worried now because I have a "plan".

But I realized something recently.  I'm in trouble.  I'm fat and lazy and really in horrible shape.  And, although this has been true for a VERY long time, now I'm starting to see it affecting my health.  I strongly suspect that the next time I see a doctor, I'm going to get more than the standard "You need to lose weight!" lecture, but a handful of prescriptions as well.

So, my summer plans are evolving.  I need to also do something to help me improve my condition.  I need to exercise daily.  Going out and walking the dog is good, but it's not enough.  I recently purchased "The Biggest Loser" for Wii -- I plan to pull this out daily and do a workout.  I don't expect to like it, but I hope that as I see an improvement in my performance, I'll find the impetus to continue.

Because, you see, what's happening to me cannot be allowed to continue.  I see it spreading to my kids.  I see how they too prefer to sit at the computer or playing with the phone than going outside and enjoying the fresh air and getting exercise.  That shouldn't be the case for ANY child.

Hopefully, I'll find my energy.  Hopefully, I'll be able to teach my 7 year old to ride his bike, running along side him to catch him when he falls.  Hopefully, I'll be able to get my 5 year olds on a scooter and play a game of chase which has always been a favorite.

Because if I don't start taking care of myself, then my children are the ones who are made to suffer.  And now, I think I found the motivation that's been lacking for oh, so long!

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Ilene is a Stay-At-Home Mom living outside of Washington, DC with her husband, 7 year old son, 5 year old twins and a dog.  The family learned the twins were both "on the spectrum" when they were 26 months old.  They have both made such progress since then and parenting them, she feels, has made her a more effective parent in general.

Ilene blogs regularly at My Family's Experience With Autism, sharing whatever feels right at the time.  Feel free to read the stories.

Monday, June 18, 2012

From Tragedy to Triumph

After seven years of leading a support group for moms of kids with special needs, I have decided to pass the baton. Ten meetings a year at my house for seven years, you do the math. Plus, the needs of my son, Rojo, are changing - he'll be sixteen next month, and it's time to start planning for his transition to adulthood. Since that is not just the next step, but the rest of his life we're talking about, I need to focus my energy and attention on that.

We gathered one last time at my house recently for closure. Although the group will go on, it will look different, and that's not a good thing or a bad thing, it's just what it is: change. The women had organized a really nice party for me, complete with cake and gifts, and the sweetest of sweet cards letting me know just how much the group has meant to them. It's meant a lot to me, too. And it's so true that 'tis more blessed to give than to receive, I, by far, have been the one most to benefit from the group.

One of the things that really touched me was some of the women that hadn't been in a really long time (like 2 years), came. It was so good to see them, and it felt like going to a reunion, where you are able to find out all of the things that have happened to them and their families since the last time you gathered. One woman had a daughter with a seizure disorder, she stopped coming to meeting when her daughter got so sick she wasn't able to go to school anymore. A year ago that sweet angel died. We sent cards, flowers, our prayers, and some of us went to the funeral.

That woman came to our last gathering and when we asked her how she, her husband and older child had picked up the pieces and moved on after their tragedy, she said they were all doing well. They realized they had more to give. More time. More money. More care. More love. They were going to adopt a child with special needs, an older child, maybe even siblings needing a home. The adoption was moving along and they were to the home visit stage. This was going to happen. They had their eyes wide open and knew what they were getting themselves into. They were ready. They were not shriveling up and closing themselves up. They were throwing wide their arms and saying, "YES!"

I've always felt that the only thing harder than having a child with special needs, would be not having that child with special needs. Unimaginable. This family has taken the unimaginable and made everyone that knows them reconsider what there is to imagine, what is possible.

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Carrie is a parent and an advocate of a child with special needs and even more special gifts. She blogs at where this is pretty much her favorite topic. 

Sunday, June 17, 2012

The "A" Word

Recently at an autism support group meeting as I was tearfully talking about how hard it is to try and give equal attention to my 8 year old son, while trying to also handle his autistic 6 year old brother- another mom asked me a question that really stuck with me-

"Well, what do you tell your 8 year old about his little brother?"

Cue the chirping crickets.....

"I don't."

And then I really starting pondering why it is that I haven't. The "A" word had never even been mentioned to big brother.


As if not mentioning the word could somehow negate the fact that because of autism our entire household has been changed forever. Our oldest has taken on  responsibilities that he probably wouldn't have had to otherwise. He's had to give up things like t-ball and karate because we have to be at home for little brother's 5 day a week therapy sessions.

Maybe I thought by actually saying the word out loud I would make him have to deal with all of the feelings of sadness, fear, and yes- even loss, that I have felt.

Or maybe I hung on to the hope that this would all 'just go away', that this would somehow come to pass without big brother even having been aware of it....

Finally the questions really started piling up-

"Why does Jay have to work with Erika every day?" "Why doesn't my brother ever want to play with me?" "Why does he go to a different school?" "Why doesn't he talk anymore?" etc.........

So finally I told him. I answered his questions- (as best as I could). I told him it was okay to be sad and cry. I also told him that being 'different' isn't bad, it just means we need to be more understanding and patient...

And guess what...

the sky didn't fall!

Of course big brother was sad and teary-eyed- but he also suddenly understood much that he hadn't before. He told me, "I will take care of Jay when he grows up- he can live with me and my kids!"

This of course melted my heart. But before I even had a chance to respond with some deep, heart-felt reply- he was on to the next topic....

"So......can I play my video games now???"

Yep. The sky definitely didn't fall.

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JenM. is a very busy mom of 3 boys, ages 8, 6, and 22 months. Her 6 year old was diagnosed with autism at the age of 2. She is also a Registered Nurse specializing in Pediatrics.

Friday, June 15, 2012

Lowering the Glass Ceiling... Again

When we learned of Claire's delays at 13 months, we were devastated.  We attended her one-year well visit expecting a great report and instead we were told that she needed to be evaluated for developmental delays.  We were completely shocked, like the rug had been pulled out from under us.  We'd had concerns about her development from about 3 months, but were always reassured by the pediatrician that she was just on the slow end of "normal" range, but all was fine.  We were dismissed as overanxious parents.

When we started going through all of testing and doctors appointments,  the "nevers" started creeping into our heads and hearts.  Our first child, our precious little girl, would never grow up to to be the writer I'd dreamed she'd be.  She'd never get married, never have children, maybe never even get a job.  I remember one day standing over her crib, watching her sleep, the tears running down my face, grieving over the life I'd imagined for her, the one she would never have.  Instead of "the sky's the limit" attitude, we knew Claire's life would have a ceiling.  She probably wouldn't be a doctor.  In time, however, we came to accept that ceiling and adjusted our expectations.

As time passed, Claire started making progress.  She was still delayed, but she was keeping on course with staying only a year or two behind her peers.  She would get there, we realized, it would just take her a bit longer.

As school started, we saw that Claire could hang pretty well with her peers.  She didn't stand out as the "kid who needed the parapro" and she continued to make pretty good progress in certain areas.  We knew there were still challenges, and specific issues were becoming more evident, so we focused more on things like handwriting and math.  Her private therapists worked tirelessly on these deficits too.

Things were good, much better than we initially expected.  We always knew there would be limitations to what Claire would do in life, but we happily accepted that she could possibly live on her own, maybe even get married, have a productive life, maybe go to community college to learn a trade.  We adjusted our expectations for Claire and life went on.

But then the rug was pulled out from under us. Again.

On Friday, we met with the school's psychologist to go over some preliminary scores from some of her yearly evaluations.  We expected to learn that perhaps her reading progress wasn't as rosy as we had been told.  It turns out it was much more than that: she has regressed over the past two years at her current school, and despite the glowing progress reports and grades from everyone there, we are now starting to hear suggestions of taking her out of the general education population into the "CI room."  CI stands for cognitively impaired, and this is a classroom for students who need more specialized instruction in a  number of academic and functional areas.

It was another time to grieve, another reminder that her challenges are closing in on her, lowering that glass ceiling once again.  It reminds us that while she is making progress, she is not progressing like her peers.  Clearly we want what is best for Claire, and we know a CI room is not the end of the world: in fact it may be just what she needs.  But that news is always shocking and always puts us back into grief mode.

We will pick up our broken hearts, readjust our expectations once again, and move forward.  Life goes on.

But it really hurts to have the rug pulled out from under us once again.

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Don't forget to add your bio!

Keep the dashes above, delete this section here, and add whatever information you'd like to share. Keeping it in italics would be great.

In case you need some help, here's a place to start: Sally is a parent and advocate for her child with special needs. She blogs at


image from

In the Spring, I happened to have my annual gynecologist appointment. As he worked, Dr. B asked me what I had been up to in the last 2 years. (I always put this appointment off, usually with the intention that I will make the appointment after I lose weight, which never seems to happen, so the appointment is less annual, more biennial.)

I relayed what I'd been doing to keep busy, and I mentioned that Danny had been diagnosed with autism.

Dr. B responded, "I'm sorry to hear that."

I murmured my thanks as I lay there, legs splayed, and I considered what he said. I didn't know exactly how his reaction made me feel. Somehow, it didn't feel like the right response to my news, but I had no idea what would have been a better one. I knew Dr. B meant well and was being kind. Still, I thought there had to be a better way to answer such a revelation.

Over the last year and a half, there have been many responses to the news of Danny's autism, but mostly, they fall into three categories: expressions of sympathy, objections to the diagnosis ("Danny's fine! There's nothing wrong with him! My kid does the same thing!"), or offers of advice.

Of the three, I would prefer the offers of sympathy, hands down. Frankly, the reassurances that Danny is fine and the advice people offer just leave me feeling very defensive, alone and misunderstood, no matter how well-meaning.

Fast forward to my family reunion this past weekend.

On the drive to Chicago, I wondered if anyone would broach the subject of Danny's diagnosis. The last time I saw many of these family members was 2 years ago at the last reunion. Danny had not been diagnosed, but I think it was obvious to most of my family that he was having major difficulties.

My family, as a whole, typically avoids discussing uncomfortable topics like these. I don't think many know what to say, so they avoid the subject altogether, at least with the person directly involved. I understand this and have been known to do it myself. After all, it can feel awkward even trying to raise the topic, especially when you haven't seen the person in years. What do you say?

"Please pass the potato salad. Sooooo....I hear Danny's autistic"?

Still, it sometimes leaves me feeling a bit isolated.

When we arrived at the reunion, Danny and Charlotte joined their cousins on the playground, leaving me to relax on the sidelines. As I watched to make sure Danny wasn't getting over stimulated, my cousin Ann approached me.

Only a year apart in age, Ann and I were very close growing up. Over the years, though, we haven't seen a lot of each other. She lives in a different state, and we both got married and had kids, all of which made keeping in touch difficult.

I was glad to see her and prepared for the small talk I was sure was coming. Instead, we somehow got on the subject of autism. And this is when I had probably the most validating autism discussion with someone not directly affected by the disorder. Ann asked me the most thoughtful questions about what Danny was like, how autism affects him and what that means for his social and school life. She inquired about challenges I face with parenting and disciplining. And she listened as I explained that though Danny appears to not care about others, he is actually quite empathetic.

Thankfully, Ann never offered me a piece of advice. She didn't express pity and she never tried to downplay my challenges in an attempt to make me feel better. Instead she offered me the best gift of all: validation.

Ann's final question almost brought me to tears.

She asked me if I ever wondered, "Why me?" If I ever just got angry that I had to deal with this, angry that my kid was saddled with such difficulties.

I choked on the word "Yes!" as I tried to keep from crying. Ann had tapped into the very issue I had been struggling with for months. After Danny's diagnosis, I wasn't surprised by my anger; it seemed appropriate. Eventually it subsided, replaced by a feeling of determination to get Dan all the services he needed.

Recently, though, the anger has resurfaced, surprising me by both its intensity and my inability to move past it.  Why now am I feeling so angry and hopeless? Shouldn't I be past that at this stage? What's wrong with me that I'm so sad and angry? I have been feeling guilty and weak and wondering if the anger will ever go away.

But when Ann asked me that question, somehow I felt peace. She validated me, confirming that, yes, dealing with autism is difficult. Sure, everyone has problems, some much more heartbreaking than mine. But, that fact in no way diminishes my pain. It was almost like she had given me permission to continue grieving, as long as it takes.

And apparently, that is exactly what I needed.

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Patty is a stay-at-home mom to three wonderful kids, all of whom have Sensory Processing Disorder.  Her oldest son is also on the autism spectrum.  She is a freelance reporter for her local newspaper and started a LEGO Social Club for kids on the spectrum last year.  She blogs at

The Qualifier

Last week I was at physical therapy, and my therapist asked me what plans I had for the weekend. I told him I was taking my daughter to a program at the Museum of Fine Arts, and she was really excited. He asked me what she would do, and I explained that the kids would be shown certain paintings, and then do a craft based on them. How she asked to bring a sketch pad, so we could stay after and see all the art, and she could do some drawing of her own. How art is something she truly loves.

I didn't tell him that it is a program for kids diagnosed with Autism.

It's easy to say I didn't mention the Autism part because I don't know him very well. The truth is, this is the second class Katie will attend, and in my everyday conversations with people I do know, I don't always label it, either. If I do, I stress how much Katie loves art, and is actually interested in the pieces. I want her love for it to be what shines through.

But, am I a bad parent for leaving the big "A" out?

Here's the thing: This is something Katie really does enjoy. She loves the museum, and she loves this program. Yes, it is for kids with Autism, so they can access the art in a more comfortable way, with fewer people than a regular class, and guides who understand kids with this diagnosis. But, we aren't doing it just because it's a program for kids on the Spectrum. We are doing it because it is something important to her.

Those unfamiliar with "Autism" would hear the word and concentrate on that. Pull up whatever image they have in their mind, and automatically see my daughter as that. I fear it would get in the way of them understanding Katie as a person. As a lover of art. It would put her into the role of an autistic kid whose mom is bringing her to a special needs program. Katie, the person, would be lost.

It's ironic, all the years we spent fighting for a diagnosis and treatment. How I clung to the label for so long, because it got my girl what she needed. Now I am desperate to not have it define her. Autism will always be a part of her, but just a part. She is now, and will continue to become, so much more than her diagnosis. Those other parts are just as important, if not more. Autism isn't the first thing I want people to know about her. I don't want their stereotypes to get in the way of what a gorgeous, brilliant, loving, talented person she is. I want people to know Katie for Katie, and in doing so change their perceptions.

That is awareness to me. Allowing people to know my daughter, and realize Autism isn't just Rainman, or whatever TV character happens to be diagnosed with it this week. As she gets older, she can decide what role she wants Autism to play in her life, but for now it's just important that she be seen as a kid who loves art. No qualifier needed.

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Jen is the mother of two wonderful kids, Katie, who is 8, and Ben, who is 5. She blogs at Still Looking Up, about special needs parenting, and everyday life. You can follow her on Twitter @JenTroester and on Facebook.

Thursday, June 14, 2012

Finding Hope Again

One of the reasons I love writing for Hopeful Parents is because of the name. Writing for a group that calls itself "hopeful" includes, in my view, an implicit charter to write about hope and a hopeful way of life. And by writing about being hopeful once a month, I allow myself to actually be hopeful.

But what do you do when you're not feeling so hopeful?

Seriously. I'm asking.

This is not a post where I tell you the five steps I take when I need to rejuvenate. (An extra five minutes in the shower isn't enough to wash this level of stress away.) Nor is this a story in which a small moment shows me the joy and hope in life.

So I ask you:

What do you do when the behaviors are simply beyond your control?

What do you do when you read the report that tells you that the school your child has been attending for two years is all wrong for him? When you come to truly understand how little progress your now five year old has made since he started school at age three?

What do you do when you have wonderful friends but you have no idea how they can help you? When a night out or a glass of wine, as lovely as they are, simply aren't enough to heal what is broken?

What do you do when it has been years since you've truly had a good night's sleep?

How do you hold together a heart that is breaking, when you want so much to heal and fix and nurture, and all you can do is survive?

How do you get back to hope, when you truly do consider yourself a hopeful parent?

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Jen Bush also writes at her personal blog, Anybody Want A Peanut, where she writes about raising a preschooler with autism, a neurotypical three year old, and a dog on Prozac.

Wednesday, June 13, 2012

Reclaiming FUN

I'm a day late on this post and I really am sorry about that.  I'd love to say that being late is not typical for me, but I can't.  Being a day late is not typical but late in general is how we typically roll.  This is not by design but a side-effect of our current life situation.

Amazingly enough, we made it to an appointment early one day this week and my oldest daughter said to me - "Something must be wrong.  This never happens. We're never early."  Thankfully nothing was wrong and I had a moment to talk to my daughter about a time in my life when I was usually on time or slightly early for most things.  I recall her laughing a lot during that conversation ;-)

I am currently in all-out planning mode for our summer and it is not a moment too propensity for lateness even carried over to my planning.  My oldest daughter is already out of school for the summer and my youngest wraps up this week with a summer session of 5 weeks schedule for later in the summer.  In addition to the school schedule we have therapy schedules that effect our summer plans.  Our family brainstormed a list of fun things to do this summer.  It's filled with wonderful ideas and the bonus is most of the things are cheap or free which means we might be able to complete many of them before school starts.

But planning the fun has been more difficult than I imagined because my little one has afternoon therapy sessions most days of the week.  Summer hasn't even started yet and I'm already annoyed with the frequency of her therapy sessions!  I have managed to adjust the schedule so there will only be 3 days/week with afternoon sessions instead of the standard 4 but even that seems extreme to me for summer.  And this made me quite grumpy.

Then I dug deep and reminded myself that we are in control of our schedule.  I always knew this but when your child is so far behind in meeting developmental milestones and is {actually} starting to make some wonderful progress I find it hard to remember to slow down or stop for a bit and I needed to reminded myself.

So I am planning our summer schedule with a high priority on doing most of the fun activities on our list and then I'll see what therapies work with our plans and we'll cancel or reschedule the rest.  We are making the choice to prioritize fun over therapy and tracking unmet milestones.  This decision made me very happy and I feel like our family will be more balanced this summer.  And I know Emma and all of us will thrive.  And that is something that makes me very Hopeful!

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Kristina is the mother of two charming daughters and wife to a wonderful man who puts up will all her wild ideas.  She works to raise awareness of cytomegalovirus (CMV) and preventing CMV exposure during pregnancy.  Kristina graduated from the national Partners in Policymaking program in September 2010 and is an advocate for disability rights and inclusion education.  You can read more at

Monday, June 11, 2012

Second Son

This post appeared about 6 months ago on my blog, but as my second son's second birthday approaches next week, I thought I'd publish it here, just to see if you other parents have felt the same way, are worried about the same things, or just want to allay my fears with your own stories. Thanks for reading!


Let me tell you the heart of fear—having one AU child and then having his younger sibling approach the age where changes in the oldest first started peeking through.

In December, Eliot will be 18 months old.

He’s starting to do things that I’d forgotten Liam liked to do—stack cans, play with the dog food, tip over the dog water, rub the vacuum lovingly, pull out cords from the wall, tear books apart at their spines, help me unload the dishwasher (and climb into it)…

Are these age appropriate actions? Are these signs of AU that I missed in Liam?

I don’t know. Like a shaman, I watch for signs to tell me truths about the future.

I notice that Eliot will flap his arms sometimes, his night-waking is getting worrisome, and he sometimes stares into the distance and spaces way, way out.

I can explain these things—he’s copying his brother with the flapping or he’s just excited; Liam’s noisy night times wake and keep Eliot up; the spaciness is due to him being tired….

Could be true; but, I said the same things with Liam. For years, I told people: “he’s too tired to play/hug you/laugh/talk.”

I know this is an unproductive worry, but I can’t help it. There’s an abyss at the 18-month mark and I feel pulled to its edge. I can’t turn away and so I turn these questions over and over in my mind: “Autism, will you take my second son? 

Can he weather the assault of genes and environment to stay the same happy, laughing, curious, playful boy that he is—or will he retreat into corners of himself that I’ll have to wrestle him out of?”

Just let me keep this one. Please. You tricked me with his brother, and I’m dealing with it. But, let me keep this little boy.

Eliot does a lot things that Liam never did—sit with a toy for long stretches of time, ask us to read him books, seek out back and forth interaction, play chase, point to airplanes, identify pictures in books without promptings, make 2 word phrases at appropriate times (“hi dad!” to Adam when he gets home; “hi Eliot” to himself in the mirror)…these are like little stars in the dark unknown of the future.

We’re also a lot more savvy about his diet and his vaccines. He’s not had shots since Liam’s diagnosis and he’s been on GF/CF diet since he could eat solid food. Maybe these things will be enough. Maybe they will help him through the next 6 months.

For now, I watch my second son carefully. I watch and I wait. I cherish his every little word, interaction, and milestone. And I try not to worry too much.
(And then, when I do start to worry, I marvel in secret awe at the parents who have done this more than once. You are so much stronger than any of us know. )

I think this quote, which I remember from a wooden plaque in my parent’s basement, sums it well:

Now is the only time we have.
The past is gone.
The future is not here.

Perhaps it’s trivial, but I can live with that. I can live in the now with the children I have, not the ones I thought I had or the ones I might have in the future. Now is the only time we have.

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Read more from jamie at: 


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"Irony is just honesty with the volume cranked up." George Saunders

Okay, I cheated, and looked for clever quotes online to start my piece today.  Ah, the irony of that!  Blogging is about creative writing, right? And here I am lifting someone else’s cleverness. I don’t even know if George Saunders actually said this, or from what piece it’s from. But I’ve been thinking a lot about irony these days:
  • I hate, hate, hate snot. I don’t like anything of the sticky, slimy consistency of nasal discharge, including slugs. Just typing this is giving me the gag reflex.  YET!   I have a kid who produces so much mucus that she has her own suction machine.  After a year, I am finally able to use the machine and empty the waste bucket. 
  • I love spring and lilacs and the budding of nature, and my daughter and I have really bad allergies to all the pollen and stuff floating in the air right now. 
  • I want nothing more than to be loved and love, and yet I often do everything possible to jeopardize such loving.  Picture a cornered angry cat with her claws fully extended and ready to tear your eyeballs out, and you get a picture as to how easy it is for me to accept love.
  • I have struggled with depression most of my life.  Ha! The joke is on me when I became a mother--I have a daughter who has a serious illness that would set any normal functioning human over the edge of despair.  How funny!
  • Unlike many expecting mothers of twins, I was thrilled that I would have two kids at once. Poof! Instant family.  However, I can’t help feel as if I got cheated out of the twin experience. Gotcha!
  • My own mother has always been a little odd and off kilter; she’s a little too anxious and a lot too angry.  Recently we just got the official notice that she has Alzheimer’s, and it’s hard to say exactly when her dementia set in.
  • I’ve always been a little queer, out of the ordinary, and yet I so desperately want to belong to a larger, meaningful tribe.  I make decisions that probably set me apart from others—too cerebral, too cynical, too scared, too fat, too funny, too whatever! 
  • My daughter Sylvie cannot speak or move, yet she is super smart. Unfortunately, there is no test for her intelligence because everything is dependent on verbal and or motor skills.
  • I typically think of myself as an extrovert and someone who likes a lot of people around; it’s virtually impossible that a day goes by that a Personal Care Assistant, a nurse, a case manager or someone else for my daughter is not in my house.

The incongruity between my actual life and my expected life is just full of irony. Sometimes I think my sick humor gets me through each day.  Most of the time it’s a pretty good shield; it keeps things interesting, but sometimes I wish there was a little more predictability or regularity. But I would probably get bored at this point in my life…… 

Kirsten is officially on summer holiday from being a professor of Communication Studies at the State University of New York.  She is the mom of gorgeous and smart two 6-year daughters who are no longer in kindergarten!

Adoption Soap Opera

Do you ever feel like you are part of a really bad TV show?  Or that Candid Camera is secretly stalking you?  

I feel that way a lot lately.   It is all part of adoption.  More so when you want to adopt a special needs child.  

We had been looking at all types children.  Many if whom have had a whole list of alphabet soup in their info.  We have dealt with high maintenance social workers, and a whole cast of grade B actors who made me want to hit my head on wall. 

It is frustrating, slow, and painful.  I feel like I am stuck in crazy land.   All I want to do is bring a child into our home, love them, and give them a family.  You would think people would beat down our door.  We are not picky about race, gender, or special needs.  We have jobs, are not psycho, and are even described as pleasant to be around.  But so far there has been no rush.  Lots of nibbles but no child.   It is hard to wait.  I hate the thought of kids rotting in the system.  And of living in limbo.

But still I press on.  I hope the next post I have will have some better news, but right now I feel fairly battle weary.  I know there is hope and it took us three years to get our son so this is not going to be instantaneous.   So I will keep marching in the battle and hope that I don't hit too many land mines.
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Amy is in the process of trying not to loose her mind while she is adopting a second child.  She is a wife, mother, and Montessori teacher.  You can visit her at

Sunday, June 10, 2012

Blessings and thank you's.

This has been a crazy school year.

We started off in a school district that refused to mainstream my son for more than 15 minutes a day, and who admitted freely they didn't start on academics until November 'because of behavioral problems in the class.'

December 1 we moved, and my kids started in our current school district. They immediately put Graham in a mainstream classroom for a large portion of his day. He did fantastic, but needed extra help. Before the teacher had to step in, or an aide was suggested, the kids intervened. While all of the children went out of their way to help Graham (trust me, I saw at an assembly what phenomenal children these are, and I am still teary-eyed thinking about it), three really took to him and made it their goal to help him. I cannot say enough about these children, and about all the parents in the classroom that raised all the beautiful souls we encountered.

Last week, I sent home presents to my son's three 'helpers'. Graham helped pick them out, and with the teacher's blessing, I put them in little gift bags and sent them home. I also included a note for the parents, thanking them for raising such exceptional children, explaining how much of a difference they have made in the life of a little boy.

I got a thank you email almost immediately from a parent telling me how proud it made her, and it was the best thing she could ever hear about her daughter.

Then the next day Graham handed me an envelope addressed to him. He proudly announced that it was from his best friend, and waited for me to read it.

One of the little girls wrote Graham a thank you note. Herself. And included a picture of her and Graham with a flower.

It read:
Dear Graham, 
Thank you for the present. 
You are a great friend.


I would spend a lifetime telling you how happy it made me to read this card. How he had a real friend. That liked him so much she wrote him and drew him a picture.

But what made me cry was my son's reaction.

He smiled. He re-read the whole thing.

When his dad got home, he proudly showed him the picture and told him who it was. He carefully placed the card back in the envelope and put it gently up where he knew it was safe. He has re-checked to make sure it's still there a few times, smiling when he sees it.

As our year closes, I think of how thankful I am for the wonderful people we were blessed with. His team here that had faith in his abilities, and the children who accepted my son for everything he is and helped him when he needed it.

And I hope and pray that next year we are as blessed as we were this year.

You don't get much better than that.

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Katie is the mom to two sweet kiddos, one with autism. You can find her blogging at Okay, Who Turned Out the Lights?

Things to be Grateful For

Holding my Mom's hand in the hospital

This has been a really hard few weeks for our family. My frail, 89 year-old mother fell and broke her hip and it has all cascaded downward from there.

On the day she fell, ironically, my (autistic) son Jacob and I were on our way to see her. He had the day off school, so I had scheduled a doctor's appointment for him in the morning, and the plan was to go from there to my mother's apartment at the assisted living building she lives in. We were going to do Grandma's laundry, take her to lunch and just generally spend the day with her. Jake was excited about this, he loves his Grandma.

But it was not to be. On the way to the doctor I got the phone call that my mom had fallen, and I didn't realize how much Jake was listening in to the details of my conversation until I got off the phone to hear him ask, "Is Grandma okay?" 

And then once I had explained to him what happened and that we would be visiting her in the hospital instead of at her home, he proceeded to tell everyone in the doctor's office: "My Grandma is in the hospital. She doesn't feel good. We are going to see her to tell her to feel better." (Whoever says autistic kids lack compassion can go suck it.)

Jake was amazing in the very busy, very over-crowded emergency room - where he had to stay with me for about 2 hours until my husband could swing by to pick him up - patting Grandma gently and telling her to feel better.  He was a little too curious about all the other very interesting things going on around, and I had to stop him from loudly and excitedly asking "What are you doing to him?" when the nurse came to take blood from the man in the bay next to my Mom.

But on the whole? Awesome. (It helped that I had packed his DS and plenty of snacks for the visit with Grandma!) I sincerely doubt that his (sort of) typical twin brother could have been so patient in this same situation, or that he could have been in times past, and I am so grateful for how far he has come.

And then in the weeks following, my husband has had to step up to the plate and become both Mom and Dad; my community of friends has rallied around to help out with the boys while I spend the majority of my time with my Mom in the hospital (as I am her only local child). 

Kids have been picked up from school, school buses met, all-day playdates scheduled on weekends. Even for Jake. Yes, I said even for Jake. Because I actually have two amazing friends who can and are willing to Jake on for a whole day.

They are both moms who have known him for years, their oldest kid is a boy who is a friend of Ethan's, and their youngest is a daughter, 3 or 4, who is fast friends with Jake. Is is magic and a miracle and something I am grateful for every day. But especially in times like this, when for me "parenting" consists of managing my kids complicated schedules by cell phone texts, and getting home from the hospital (barely) in time to kiss them goodnight before they go to sleep.

Jake wants to go visit his Grandma in the hospital to help her "cheer up" and a little later this week, when I see she is feeling stronger, more herself, I will bring him. "You fell down and hurt your leg!" he will tell her. (He likes to narrate people's stories back to themselves, something we used to do with him a lot when he was little.)

And hopefully, she will feel up to giving him a smile and a hug. And he will enthusiastically cheer her on as she takes those painful, tentative steps with the walker, 50 feet down the hall and back, as she once cheered on his first baby steps, nearly nine years ago.

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Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation"  She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.

Saturday, June 9, 2012

Hopeful Friendship

I remember one of the ways I processed my feelings a few months after my son’s autism diagnosis.

Process being a euphemism.

I sort of paced-stomped around from room to room like my house was a pinball machine and I was the hard, cold ball inside trying to stay out of the gutter by reverberating off anything in site, clutching my cell phone and spewing anxiety to one of my longest-time friends three thousand miles away.

I kept explaining, and reiterating that there was no way I could explain, what I felt.
I kept yelling and crying and complaining, using verbs like HATE, TRYING, FEELING, and words like CAN’T, WON’T, MUST. These words had no relationship to my son; my verbs for him, like love, protect, worry, treasure, and hope, were too fragile to see the light then, and I kept them tucked inside. The words I spewed were about ME, about my experience in the pinball machine.

What could my friend say? I have no idea, because I could not hear her. I am quite sure she spoke. I am quite sure it helped. Not the words, themselves, but that she would bear witness to my whirling, spinning, shooting madness and let me have an experience not about autism or my son, but how I felt about it, how I processed it.

We had been friends for 25 years at that point, and that in and of itself is what we had in common. Maybe not the sum total, but far and away the biggest thing, the important thing. I knew she would handle it differently in my place, of course, and so did she -- we had no illusions about our vast differences in temperament -- but this was not a time for judgment of me or my process. It was five years ago.

Now, my friend and I have another thing in common. And we were right to know she would handle it differently. She is not a pinball. She does not call to talk about it, and when I call her, she does not describe how she is feeling, so much as how her son is doing, and what she is doing to protect him, what she hopes for him. She texts and emails, saying things like, “It’s kind of odd when I think about it that I’ve talked to you the least, really, about our concerns about our little man’s development...” Of course, her experiences bring to mind my own, of course, bring me back to where I am and where I have been with autism, and her son makes me think about my little guy, but her story is not mine, her son is not mine.

And I’m not going to judge her process.

I’m not sure exactly what to say, but I am guessing the what matters much less than the being a friend.

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Rooster's Mom is a parent, educator, wife, mom, and writer. She blogs at

Friday, June 8, 2012

New Shoes Make the Man
The old sneakers were getting pretty beat up and starting to wear thin on the soles, so it was time for us to go to the local children's shoe store in the mall. Buying shoes for Danny has always been a challenge, with him often unwilling to try on more than one pair, and not helpful in standing up, or walking around. We have had more than one temper tantrum in shoe stores in the past, which typically involved a lot of shoe throwing, yelling and nasty stares from other shoppers.

There were some new, cool Star Wars sneakers that I was tempted to look at in his size, but at age 17, they didn't seem very appropriate. I forced myself to put them back on the shelf. We turned to the brand name aisle--Nikes, Converse and Addidas, and with some help from the nice shoe salesman, found a cool pair of white sneakers with the three distinctive black stripes.

For once, Danny seemed seemed pretty enthusiastic about the new shoes in the store, even looking at them in the mirror but after purchasing them, he wanted to wear his old shoes home. He told my husband all about the new shoes, and wore them that night for our neighborhood walk. Although they were still pretty stiff, he wore them the next day to school, and as soon as we pulled up in front of the building where his 1:1 aide was waiting, Danny pointed to them, and said "new shoes, new shoes". The aide admired the Addidas three stripes, and agreed that they did make Danny look pretty grown up and cool.

One step at a time...

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Michelle K. Wolf is a parent and non-profit professional. She blogs at

Wednesday, June 6, 2012

I have a lot to be proud of...

This week, we asked our OT to do some new assessments on Billy. We’ve noticed he is slipping back in some skills he had already mastered, and that he’s struggling to sustain his energy while doing some tasks.
We don’t have the reports yet, but the summary of her handwritten assessment forms places Billy in the 1st percentile. It’s the same assessment (scaled for age) she has done every two years (or so) since Billy was 20 months old. He has headed down the percentile scale across his life.
We are used to these low scores. They suck to read, but we’ve been in this game long enough to know they are not any value based measure of who Billy is.
What they do make me think is… Billy is a total legend.
With motor skills poorer than 99% of his same age peers, he manages a hell of a lot.
He’s a master on the trampoline. He’s especially good at wrestling his friends on the trampoline (wrestlemania bounce) and also bouncing on a giant fit ball on the trampoline – the double bounce. He does a mean ‘cheetah chasing a gazelle’ on there, even managing to swat down the hapless gazelle (unsuspecting co-jumpers) with incredible coordination.
He’s able to build meticulous toy and craft material recreations of Attenborough moments, famous Thomas the Tank Engine scenes and the odd adventure in Bikini Bottom or Danville. They take time (days), energy (often requiring begging for chocolate) and a lack of giant hairy dog ‘help’ (a common hazard).
He manages quite a bit of PS3 and PSP action, never needing to stare intently at his thumbs with his tongue stuck out (as his mother must do to even get the damn things going).
Do we worry about his skill level? Oh yes. Are we concerned about what he can and can’t ‘pick up’ in his lifetime? Completely. Do we devalue him by acknowledging his deficits. No way.
Having a child with autism is like being stuck in a hall of mirrors, some days.
You never quite know which one of your instincts you should be following.
Love? It’s a brilliant motivator, but does it blind you to the hard things you really should be facing.
Ruthless research? It’s great for the cognition, but exhausting for the heart, and ultimately a complete brain scrambler.
Focussing on the future? It’s equal parts thrilling, terrifying and pointless.
So, on the days when things like 1st percentile get wafted past my eyes, I let myself loose on the rollercoaster, and open up my senses. Who knows what I will learn?
Cranking up the hill I think, ‘Hey, he’s talking, he’s happy, he’s a really happy kid, he’s funny, he’s charming, he’s engaged with his life.’
In that momentary point at the top, I look at the view and yell, ‘He’s the next David Attenborough, you idiots, who cares if he can hold a pencil!’
Then we plunge down. Past certain teachers who saw me as the ‘issue’, through the corridors filled with medical equipment, past the doctors flicking God’s deck of cards at us, directly towards the faces of family members flicking between confusion/concern/acceptance/judgement, before corkscrewing through the autism community with all their varying polarising certainties.
Before I hurl my lunch (and you know how much I hate vomit), the rollercoaster slows. I look down and I see Billy. He’s hanging with his Dad and he’s safe.
He’s not on the ride. He’s grounded. He’s living today like it’s the best day ever. He’s not thinking about his ability to throw a tennis ball, or why his fingers can bend backwards to his wrist. He’s totally loving the whooshing of the rollercoaster, and his face lights up when he sees me.
I can’t ask for anything more, and I’d be wasting my energy to try, right now.
So what if the other 8 year olds are clambering off the ride beside me, high fiving each other (without touching the backs of their own wrists with the force of the slap). They’re probably going to vomit soon, anyway.
Which is my cue to leave.

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Valerie's increasingly random ravings can be found at Jump on the Rollercoaster.

Tuesday, June 5, 2012

A moment of madness!

Funny things start happening when middle age rears its grey head......

A longing for another pregnancy. The urge to hold a new baby and breathe in that soft sweet smell. Reminiscing over old photos and dreaming of days gone by....

It's moments like these that cause me to go a little bit crazy mad. I become irrational and make spontaneous decisions. I think with my heart and not my head. I decide... damn it, why not!!

This time I pulled a real doozy.

Thanks to a chance meeting with a friend and a couple of phone calls; in the space of a few hours I bought a dog!  Me, the chick who has never ever had any desire to own a dog. Me, the mum who has a child with autism, which surely is enough to keep me busy!

Two things crossed my mind. Firstly, it was coming up to my son's 13th birthday and a dog would make a great present. A bit silly really, considering that Nick doesn't understand relationships with people so why on earth would a dog make a difference to my child! Secondly, my husband was out of town for the night, so I figured that he wouldn't be around for the first night of a howling dog and it would give him (the hub's) time to come to terms with the fact that we have an extra member in our family!

What I didn't expect, was to have my heart stolen by this little scrap of fur, sharp teeth and a smelly bum! You know... when you have a kid with autism (well, one like mine!) you get used to the lack of affection, or should I say... I have got used to the lack of affection. I don't expect the spontaneous hugs and I know that I will never hear the words "I love you Mum!"

I didn't realise how much I missed having a *regular* relationship with my son until this little dog showed his delight at having me around. I don't want a lap dog; however, at times I lift him up and cuddle him into my body. I love that he tucks his head under my chin and makes little snuffling noises! I find myself going all gooey and I start with the baby talk!! I have to laugh at how silly I am over a dog! But really, look at that little face below and how can you not fall in love with it!!

Someone mentioned to me about getting a therapy dog for Nick!  Well, I got the dog; however, it wasn't for autism sake. This dog is for all of us... because this family needs to have a balance. All too often, the decisions we make revolve around the needs of Nick! How will he cope, manage, survive and all that other stuff that goes hand in hand with my boy. I think that I am getting to the stage where I feel that life must go on regardless; and if that means buying a dog... then so be it!

What does Nick think of the dog?  Nick is not wildly excited about it and I have a feeling that he thinks the dog is a pain in the butt! However, he is very tolerant and he is quick to let us know if he has had enough of the dog OR otherwise he puts a cushion on top of it!  In order to establish the pecking order, I have given Nick the role of feeding the dog, although I make sure that the dog is not fed until after Nick has eaten his own meal... The dog has to know who is boss... right? I was so delighted the other day..... the dog was asleep in his bed and Nick went over to him and gave him three very quick pats! This only happened once, but still... I call that progress! 

One thing is for sure... the dog has cured me of that need for a new baby. I had forgotten how much hard work they are!! :-)

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Di doesn't have much spare time for blogging at the moment! (I wonder why!!!!!!). You can find her over at The Bright Side of Life; and she promises not to waffle on about the dog!!