Summer in Maine meant spending whole afternoons and evenings at the beach. Not yet diagnosed with autism, but a severe language disorder and a mild developmental delay Isaac displayed many atypical behaviors. To avoid sensory overload we'd pack up a bag of toys and a lot of treats and enjoy the solitude of a mostly deserted beach.

 Isaac loved wheels! He was still playing with a number of toys. In retrospect much of Isaac's play was  typical, but it was extremely limited. He repeated actions over and over and over again. At 3.5, Isaac was a happy camper as long as you let him do his thing. Back in the olden days he had a lot of obsessions and echoed words he heard quite well.

In Naperville, IL, Isaac at age five spent a great deal of time trying to micromanage his environment. A box, tearing paper, a beloved trash truck that made life like noises were tried and true friends. Still extremely attached to us. Isaac rarely sought out other people. 

Isaac loved Star Trek: The New Generation, Thomas the Tank Engine, anything with wheels, anything with motors and electricity, lots of logos, and did I mention anything with wheels? Even his box was preferred because it had a logo. Anything related to the postal service at all was a passion. Anything you remotely connect to the postal service was loved. Stamps were good. Flags were good only because the most common stamp at the time had an American flag on it. Eagles were good. Eagles were related to the postal service.  Mail boxes were good. People who delivered the mail were Gods.

Naperville, IL, Isaac spent a lot of time engaged in repetitive and isolated play. At six years of age, Isaac continued to have an enormous excess of energy. I thought about including a couple pictures that showed him in motion, but got exhausted looking at them. We actually were grateful for the reprieve when he would play with the answering machine, the vacuum cleaner or as in the above photograph, the can opener. He found the mechanics of certain small appliances far more interesting than any item you might find on a Toy R Us shelf.

Sarah and Isaac in Cambridge, MA: Trick Treat Time. Isaac is nine. He and Sarah dressed up as an old fashioned couple.  Sarah, Isaac and Dad went out for a bit. Isaac had a hard time understanding why they would knock on the door or ring the bell of somebody's home and not be welcomed inside! He had no interest in candy but like his mother, he wanted to check out the interior!

Christmas Eve in Portsmouth, New Hampshire. Isaac at ten years of age is able to enjoy the visit, but after a couple hours of chaos and gift giving, he wouldl retreat to a quiet space. We always bring the mandatory videos and Thomas books. The sameness is his saving grace.

Sarah and Izy at a look out point where you can see the Boston skyline.

Dad and Isaac hiking. They stop for a break. I'm not sure what they are seeing, but Isaac loves to watch birds take flight.

We developed a task analysis program for tooth brushing. Here Dad models teeth brushing. At ten and a half, Isaac is able to learn some basic self help skills through demonstration. He requires assistance for many of the steps, but keeps making gains.

Bed Time Routine: Isaac washes up. We're fading prompts here. We have gone from full physical prompts or hand over hand assistance to merely shadowing most of the steps. If he got stuck or stops we would step in and help him through that step.

I

Isaac at age 11 with his young cousin, Logan. Isaac's comfortably kicking back, at home in the big yellow beanbag. When Logan was a baby, Isaac spoke rarely and at times seemed oblivious. Once he, said "Poor baby!"  when Logan cried. Hewas a bundle of contradictions. He rarely acknowledged children in general, but appeared to care about the baby's sadness.

Isaac gets cuddly with Mom and Dad. Isaac has over come most, if not all of his tactile defensiveness and contends with a lot less tactile sensitivities and makes up for lost time. He enjoys a hug before being tucked in to bed.

Isaac is turning in to quite the young man here. You can't see it here, but we were at a farm, and Isaac had just fed a cow. Nearly 12, Isaac continues to enjoy visiting the larger animals at a farm or a zoo. He has a harder time at the zoo because you can't get close to the animals. He loves the really big animals; elephants, dolphins, gorillas....

Isaac turned twelve. This is a bittersweet birthday. Isaac was discharged from a brief stint at a residential school which was good news, but the following week we were flying out to Omaha, Nebraska for neurosurgery! I think he's beautiful.

               HAPPY BIRTHDAY BELOVED BOY!

June 1999, Isaac had bilateral neurosurgeries for Landau-Kleffner Syndrome. He is diagnosed with Autism too, but  LKS is was what we focused on for a long time. This is a close up of the left side of his head,  the incision wrapped around a good part of his head. He had a twin incision on the other side. We hoped this procedure would stop the seizures, regressions and the mixed blessings recoveries followed by the dreaded relapses he was prone too.

Isaac managed to not only maintain his good humor during a very trying summer, but he wowed us with his intense desire to connect and to communicate. In the following weeks Isaac regained several words and even some phrases and was absolutely delighted to have a few dependable words at his disposable again, and better yet, we understood!

Isaac in late July. After recovering from neurosurgery, Isaac had to be rushed to our local hospital two and a half weeks later, and was diagnosed with a life threatening skull infection. He spent a week in the hospital on the neurology floor. Then he was sent home and had 9 weeks more of medical treatment. The strap you see on his shoulder is a battery operated twenty four hour pump that fed two types of antibiotic through a pick line through a vein. It's a kind of I.V. To say he was a trooper doesn't begin to come close to describing what he went through and how well he dealt with it. This from the little boy who used to freak out at the sight of a bandage. You've come a long way, Baby!

Isaac enjoyed the wind and surf on a friend's boat. He got a real rush out of seeing the boat turn and the swells come up and gather together to form a great foaming action! You can't see it here, but Isaac has the I.V. pump on under his life jacket. He had to wear it day and night.

You can't go boat riding every day!  Isaac sorts by category/classification. He checks to see if Mom is noticing how well he's doing! Good Job, Isaac! We were doing a lot of assessing and base lining after surgery. Skills Isaac couldn't do at all or repeatedly learned with great effort and then lost were learned easily and generally retained or very easily retained after very simple review in the months following his surgery.

Isaac and Sarah stroll through a zoo in Greater Chicago on vacation. Apparently it's a teen only walk.

Isaac age thirteen and Alex, who I believe is a year younger. Both boys have significant autism and limited language. They had never met before that day. His mom has been an online friend for a number of years. The most remarkable thing about this picture is that it was totally natural and that Isaac and Alex were generally not one bit interested in most children their age. (or any age!)

Mr. Isaac D. at thirteen years of age. Both his sisters have told me he's a very good looking guy. I think so, but I'm biased!

Isaac's sisters, Sarah on the left and Beth on the right.

Isaac is about 14 years old here. He'd been to the Aquarium and on a harbor boat trip with his ABA therapist. He often went out and about painting the town red. All work and no play makes Isaac a dull boy. He loves trips!

At 15, Isaac sports a moustache. I don't handle this reality well. Isaac's sister, Beth is seen giving him a kiss. During the best of times and the absolute worst and some of the worst has been horrific, Isaac has always loved his sisters.

Isaac was home again for several months with no school placement. We ran a part time ABA program and filled in the rest of the time with a variety of activities and field trips. Here Isaac and I (Mom) enjoy the Franklin Park Zoo. The kid is getting taller than me by the minute!

Isaac brings home the gold after competing in the summer games for Special Olympics. He's on one of the only all autistic swim teams in Massachusetts and perhaps anywhere. The games take place at Harvard University and other local areas and are very well attended. It's quite the event!

Isaac doesn't compete in the summer, so he practices his swimming in our pool in the back yard. Here we are after Isaac's had a good work-out. He looks like he could use a towel already, thank you very much!

This is Isaac's older sister, Beth. The difficulty siblings endure and the fact they often get overlooked is under addressed in the literature and by professionals in the field. There is no doubt there are benefits and a great deal to be learned by having a brother or sister with a developmental disability, but the impact on the family can be extreme and have a ripple effect. If I have anything to say that I think bears saying it would be to make time for your other son's and daughters.

Directly below the photograph of Beth is Isaac's sister, Sarah. She was and is one of Isaac's favorite people in the universe. We asked far too much of Sarah, and she took far too much on. Please remember your other kids!

The morning after a party, 16 year old Isaac enjoys a bowl of cereal and a nice goblet of eggnog. You don't serve your son or daughter with autism breakfast by candle light?  Forgive the bed head Isaac says! He just woke up!

Isaac age 16, shaved, and looking pretty spiffy with his Dad. Bill seems like he's living in the past here, but Isaac's very now.

Isaac and Nova, one of our Newf's. Nova adores Isaac even though he doesn't get a lot of consistent attention or affection from him, but in his own way Isaac really enjoys our pets.

Sarah and Beth share a good laugh. We hope they build their lives and become strong, competent and caring people, and we hope after we are gone they will look out for Isaac, love him and help him become all he can. We assume he'll live in a group home or in an assisted living arrangement, but he'll need his family.

A

This was taken April, 2004. Isaac is watching a video and is relaxing with me. (Mom) In late July, 2003 Isaac went to live at Crotched Mountain School in New Hampshire. He is a residential student there. It is not perfect, and there are issues, but if I traveled across the country and then the continent and beyond, I don't think I'd find a perfect placement, day or residential. Isaac is happy and learning and remains extremely attached to us, and we him. We are very pleased with our choice for Isaac. When he is gone the house seems bereft.

This is my attempt at capturing Isaac's child-hood through the use of photographs. I am sure I will change it some, add a couple early baby pictures, and update it soon. But, so many people have asked about him, read about him, and never really known him. Unless we win a huge lottery it's unlikely we'll be traveling around the world on tour any time soon. I hope you enjoy seeing a visual diary of Isaac's life.

Love Bill, Jennie, Beth, Sarah and Isaac (Nova, Rufus, Prudence, our Newfoundland Dogs, and Coconut and Ozzie the cats)