Within minutes of each other, I had a kindergartener and a fourth grader whisked off to school. And one screaming two year old at the window, desperate to go with them.  – My personal Facebook page status today

I put my son on the van at 7:35am for his very first day of kindergarten.

We took the obligatory pictures in the rain to document this momentous occasion.

I went back inside to post them on Facebook, like everyone else was doing.

And I couldn’t do it.

My son’s first day didn’t look like the other kids’ first day.  There was no walk over to the big yellow school bus, no wave from the window as he drove away.

We were on the van.

Last year, I wrote a post for Hopeful Parents called “The Wheels on the Bus“.  It was my first post about my public acceptance of my son’s diagnosis.  I said “I’ve grown comfortable sharing our story in town and now I am happy to have The Van pull into my driveway.  Just like every other new specialized service we’ve added to my son’s routine, it has only made life better for him and for all of us.”

And all of that is still true.  But today, I felt a little sad.

Years ago, before everything, I promised Howie that he could ride the big yellow bus like his brother.  As time went on, it became clear that he just couldn’t do it.  The sounds, the smells, the noises and the long ride to and from school would just be too much for my little guy.  Putting him on the bus would be setting him up for failure immediately.

So we’re on the van.

I put the memory card away with all the pictures, and focused on having my alone time with Lewis.  As he and I vacuumed together, I had a 180 degree turn.

I’m proud of those photos.  And I have to post them.

He’s on the van with his friends and a driver who loves him.  He’s traveling to school in the way that is not only appropriate for him, but perfect for him.  He’s greeted by his aide when he arrives at school, and sent on his way home the same way.  He is taken care of every step of the way from the moment he steps into that building until he walks in our house. We have worked incredibly hard to get to this point, and I’m not going to let some silly notion of what things are “supposed to be” stand in our way of celebrating this day.

This is our normal.  I have one son on the bus and one on the van.  Our first day pictures may look different, but it doesn’t make them any less amazing and important.

So here, for the first time, is my son going to kindergarten.

I am so proud of him.

It’s hard to believe that it has been 10 years since the day that changed our lives and the lives of our nation. Every day for weeks leading up to this weekend, I have turned on the television and watched the promos for all of the documentaries, interviews, reports, revisits…all the programs with titles that try to entice us to think theirs is going to be the best of all. Over and over again the same images of those burning buildings are shown; people running, crying, overlaid with dramatic music and sound bytes of eyewitnesses or tearful family members.

I vacillate between welling up with tears over the memories of that day, and welling up with anger over the barrage of media-esque overplay of these images; how can the families of the victims who died that day possibly handle the constant reminders? Yet, how can we NOT play these images again? Would the memory of the horror of that day be lost if we did not revisit those pictures? Will the sense of nationalism that those images evoked on 9/11/01 be gone if we don’t relive them; do they serve as a positive reminder in a way, of how strong we are as a nation?

OUR WAY OF LIFE HAS NEVER BEEN THE SAME SINCE THAT DAY, AND IT WILL NEVER BE THE SAME AGAIN.

Since 9/11, of course I’ve had many conversations with families like mine, who are living with a disability or a loved one with a disability. We have fears invoked by these images that a typical family does not. They started the instant those planes hit and we all realized we were under attack. What if we need to evacuate? How are we going to manage in an emergency situation, where all of the supports we need are not available? What if we run out of medication, supplies, or we can’t move as fast as everybody else? My son has autism and is residentially placed in Boston, about 45 minutes from our home. I can’t get to him if there is another emergency! Who will take care of him?? He can’t speak, he gets upset and aggressive, he has no way of processing directions beyond 1 or 2 simple steps! It’s an altogether different level of terror.

And yet, in some ways, we all have an advantage. We have already made the statement up there in capital letters – the day we learned of our disabilities. Whether the moment our child was born, or the moment we came out of surgery, or the minute we heard the name they give the pain we’ve had for years…from that moment on, our lives have never been the same.

I am a different person, wholly and completely. Every day I live with the stress, anxiety, fear of the future, anger of the past, and resolve to stay strong. I still cry, but not as often. I talk about what happened, to others, finding comfort in sharing our feelings and drawing strength from their strength. I will never forget. Guess which day I’m talking about?

For us, the idea of living through horror and watching our lives change in an instant is just a bit more familiar than most. It does not compare to watching thousands of people perish in seconds, it is not equal to an attack of the magnitude of 9/11 on every aspect of our culture. But in our individual worlds, didn’t it shake us to the core and change our perspective, our outlook, our future as we thought it would be?

Yes, it did. And so all of us can add terror – personal and national – to our list of experiences. It’s how we handle those experiences that will ultimately be the story that is told. This weekend I will watch the documentaries, I will tune in to the live events that take place in New York, Washington & Pennsylvania. I will cry, probably all day like I did before, for those who lost their loved ones and for a nation that lost so much. I will be strengthened by the images of strangers coming together once again to recommit to the nation and our collective strength. I will hug my husband and my children tight, and I will talk to my daughter about that day and what it means to our country, so she will remember the message.

I will carry on my commitment to a better world for my son and a better nation for my fellow Americans, in whatever way I can.

God Bless Us All.

Gently we glided on this breezy summer morning… the birds chattered quietly, as if knowing we needed their hushed tones. My baby girl, now five (and-a-half), was draped across my lap… her breath finding rhythm in our movement until slowly, softly she drifted off to sleep with a smile. It had been an especially challenging morning for her after an especially challenging week for us all, and now we found peace. And finally, I let myself feel this moment. This moment with my angel on earth. My precious daughter, my creative sweetheart, our tiny dancer with a tender spirit and the eye of an artist. I’ve always said she will someday “light up the world” the same way she lights up our lives with her sweet, knowing smile, her contagious laughter, her creative mind… her magical self.

And then I let the tears flow. Never before have I been torn with such a mix of emotions. In my heart I know that she will absolutely be able to light up the world in her magical way. But still… there is a piece of me that is so incredibly sad. Not that this is a new topic for us – in fact, that’s the real issue I suppose. As I kiss the top of her head, breathing in her gentleness, I cannot deny that ache inside. Once again, the autism spectrum has reached our family. Last week our sweet girl was diagnosed with Asperger’s Syndrome. On the heels of being diagnosed with a seizure disorder just three months ago. Oh, and her asthma diagnosis a week earlier. Really?? So I pick myself up emotionally for her and for our whole family and keep us moving forward. But for now, I allow myself this moment to breathe. Well, more accurately – to catch my breath.

It’s been quite an eventful stretch of time. The winter-into-spring (and sort of into summer) has not exactly been kind to us. And so this moment I take to acknowledge, get a hold of myself, and move on.

~ ~ ~

Backing up a bit, I’ve known for years now that while filling out pages of questionnaires about our oldest son, we could actually answer “yes/often/always” for our daughter more often than not. Because of where we’ve been along this path with our son (now nine, diagnosed with Asperger’s Syndrome, Sensory Processing Disorder [SPD] and Anxiety), we’ve known the ‘cues’ to look for. So it was no real surprise when our daughter began tearing her clothes off in pain at an early age – literally not able to have any materials touching her skin. We learned many a tricky lesson in those early days, keeping changes of her softest, coziest clothes handy for when she’d decide to undress oh, say… in the car or at the grocery store, or at a playground! Noises, crowds and transitions all bothered her, even with the most subtle (or so it seemed) difference in noise level or the slightest change of plans. Her sense of smell remains ultra-sensitive. We called in Early Intervention when she was two, and with us they marveled at her ability to maneuver her way through her days successfully despite the many challenges she encountered. Although she struggled with motion sickness (and still does), preferred and needed to be spinning, running laps around the house and swinging (and still does), walked around on her tiptoes most of the time and could only handle a limited amount of people around her at one time, our sweet girl found ways around these difficulties to still enjoy herself. She has trouble – and by that I mean she can still become physically frozen today – when faced with changes in floor surface… like walking on a deck where you can see the ground through the strips of lumber, stepping onto and off of an elevator, walking from the sidewalk to the curb to the street, or even room to room with a change in carpet color or texture. But she listened to her body, even at that early age, to know how to handle any difficulty that came her way… and she has fine-tuned her own sense of what she needs along the way. At the age of three, we continued her Occupational Therapy privately along with her big brother under the marvelous care of a true expert in the field, our “Miss Andrea.” Officially diagnosed by then with SPD, our daughter continued to make progress by making the best use of her inner ability to know what her body needed and when. Techniques like brushing and deep massage have since helped her keep her clothes on – thankfully!

Through all of that, we kept going at a good pace. While our daughter’s sensory processing issues involved the same systems as our son’s, most days her needs were a bit different than his. Fortunately, though, we were able to combine much of their home therapy into daily fun activities… and we still do. Then along came the other signs. The ones that I’d started noticing, but put on a shelf one by one for later reference. Like the loss of eye contact. And the other activities that we now know are ‘stimming’ – the first time I saw her flapping her hands, I couldn’t speak. My heart sank and my head went spinning. Eventually I got a hold of myself and put it on the shelf with the other pink elephants… until her evaluation questionnaire this year. Also on that shelf until then were chewing and licking anything she could (from clothing to toys to – usually – my face, arms, hair and hands), sniffing everything and everyone, and eternal humming, just to name a few. Ah, and the ever-increasing intensity of the meltdowns. We all enjoy her sweet humming, by the way – it’s a lovely part of who she is!

And so it goes… here we are, this time with our daughter. Although I can honestly say my husband and I are not so much filled with fear – and true, I’ve known this was coming in my heart… it is still a very difficult thing to hear, see in black and white, and process. So I take this moment, with her sleeping peacefully in my lap after a long morning of meltdowns, to absorb the enormity of this combined with her seizure disorder and the other health issues of our three children. And in the next breath, I feel comfort. As if blown away by the summer breeze on my cheek, I feel relief from my worries. I feel grateful – for these three blessings in my life. I feel a smile on my lips – thinking about all the ways my daughter’s personality brings us joy. I feel the faith and love of our growing network of support. And I am reminded with a full heart that my daughter will finally get her wish… now she will have “her own team” along with her brother in the annual Community Walk for the Autism Resource Center of Central Massachusetts. Gently we glided that morning, on into an afternoon and a life that I would not trade for anything.

A mom whose son with autism could not graduate last week, sends graduating high school students an important message about supporting people with disabilities as adults; and she shares how she honored her son.

This story comes from Sue Loring, Director of the Autism Resource Center of Central Massachusetts, a program of HMEA.

I was at my desk last night when my phone rang and it was a friend and colleague, calling to let me know that my town was in the direct path of an oncoming storm that might bring devastation and that I might want to leave the office to get to my husband who would need assistance. Naturally I took off immediately and made it home as the storm hit our area. We were fortunate in that we were subject only to a severe thunderstorm, but others in our area were not as fortunate.

My thoughts are with those families who live in harder hit areas and I pray that  no one was severely affected by last night’s events.

On my way to work this morning I was struck by how much having a family member with an autism spectrum disorder is like having a tornado watch / warning period. We know tornados can happen, we know autism happens, but until it happens to you, it is impossible to know what it is truly like. Some families get hit hard, and it is devastating, others may have initial fears of possible devastation but find that  for their family an autism spectrum disorder is more like a severe thunderstorm in their life, and may have to pick up some debris, make some minor repairs and change how they do things but that life goes on. I had a plastic lawn chair blow across the yard and destroy a planting, I should have put the chairs in a safer place before I left home yesterday since I knew we were under a tornado warning, next time I will.  Both tornadoes and autism seem to occur with a randomness that is puzzling, and leaves those affected feeling a little more vulnerable.

We strive to meet the needs of all our families who are weathering the “autism” tornado in their life, with supports and opportunities for learning, recreation and networking. For all of us, autism becomes a new normal, and we find ways to rebuild, restructure and regain hope when we work together.