5 years

Dear Benjamin,

 A week ago, you turned five years old.  We celebrated with a family party, a chocolate dinosaur cake, lots of presents, and a big-boy bicycle.  I can hardly believe that it has been five whole years since you changed my life.  I still clearly remember the day you surprised us all by coming into the world a month early, and I know I will never forget it.

You have made me better.  Becoming a mother, raising you, and loving you has made me see the whole world in a different way.  I believe I am now a more understanding and less judgemental person, and I am a better teacher because of it.  I needed a new perspective, and you have given that to me as one of many gifts.

This last year was a big one for you.  Not just because of your diagnosis, of course, but your diagnosis has been important in bringing about many important and positive changes in our lives.  We understand you better now, and are able to better meet your needs and help you.  You attend a more suitable school and PPCD program with a teacher who is better able to educate you.  You have an occupational therapist.  You have a weighted blanket that enables you to sleep better and to go to sleep more easily.  You have made friends, and you adjust to new situations quite a bit better than before.  And your verbal communication has taken off like a rocket.

You still repeat a lot of things that you hear (echolalia), but you communicate with us about your needs and your thoughts more and more frequently.  You are now able to clearly communicate specific wants, and you are beginning to talk about your feelings, like being sad or scared.  I especially love when you say, "I'm happy!" or when you spontaneously hug me and say, "I love oo!"

You still have obstacles to overcome, and I am afraid some of them will always be issues in your life.  I promise you, though, that I will always be here to help you face them.  I love you more than I knew it was possible to love, and you are the center of my life.

The last five years have been wonderful, and I cannot wait to see what the next one brings.

Love always from your biggest fan,

Mommy

Facing Fears

Ben is afraid of all new things.  New people, new places, new situations, new routines, new food, and even new toys sometimes.  He warms up to most new things, some faster than others, at his own Ben pace, but it makes me nervous to introduce new experiences because I just never know how he will react.

Last year, we went to the circus for the first time, and even though I was worried he would freak out and we would have to leave immediately, it was a huge success.  He did not mind the crowd or the noise, did not streak off out of sight, and enjoyed it thoroughly, so we went again this year.

This year, Ben just happens to be a big fan of elephants.  Elephant toys, elephant pictures, the elephant named Kayla in Curious George 2, and even the song "Baby Elephant Walk" by Henry Mancini.  He was excited to see the elephants at the circus today, but I didn't even consider the possibly of an elephant ride for him.  It would be a new experience, involving new people he did not know at all, scary stairs, and of course, a great big elephant.  I assumed just the thought of it would freak him out, but to my surprise, upon seeing a child climb atop the elephant, he pointed and exclaimed, "I want to do that!"

I knelt down, got him to look at me, and carefully explained what would be involved in doing that: waiting patiently in a line full of strangers, climbing the rickety stairs, letting a perfect stranger put him on the elephant, riding the elephant with a few other perfect strangers, and then letting the man take him back off of the elephant.  He listened until I stopped talking and then immediately said, as patiently as possible, "I WANT to ride the elephant!"  As in, what is your problem, woman?  I already told you I want to.

I took a deep breath, we stood in line more or less patiently, I handed over eight whole dollars to the surly ticket seller, and up the rickety stairs we went.

My mind raced with all of the horrible things that could go wrong: screaming, shoes being kicked across the room, hitting of himself and others, and OMG, what if he managed to hurl himself off the stairs, or worse, the elephant?

But he was perfect.

Perfect.

He nicely handed the man his ticket, calmly allowed that man to place him on the elephant, squished in with the other kids, watched as the man hooked the rope around them, and off they went for their brief elephant ride.  He beamed the whole time and did not get upset, scream, cover his ears, or kick his shoes off one single time.  It could not have gone more smoothly.

I don't know if Ben was really facing his fears or if he just wanted to ride the elephant so badly he forgot about them, but I had to face a few. 

I have learned I need to give him more credit, and I am reminded of just how amazing my little boy really is.

A Better Fit

A few posts ago, I mentioned that I had asked a question about Ben's placement for next year at his ARD in October and was told we needed to wait and see how much progress he made and that we would discuss it later.  If you know me well, you know I have trouble "waiting and seeing," particularly when it comes to Ben or even my  big kids, for that matter.

So I didn't.  Oh, I stewed on it for awhile, but the more I thought about Ben's fine motor delays, his unhappiness in his PPCD, and his lack of progress in general at this particular school, the more it became an emergency in my mind.  Because that's how my mind works.  Things become an emergency if they aren't working out properly and I need them fixed RIGHT NOW.  But I had no idea what to do about it.

I emailed the wife of a friend (both are teachers in my district), whose son had been in a PPCD/Employee Pre-K situation like Ben's and had moved to an AS PPCD at another school, to ask about her game plan for moving her son.  I followed her advice and emailed the diagnosticians at both schools involved, and prepared myself for a battle.  I would make demands, work my way up the chain of command, and even kick and scream if need be.  I was prepared to fight for what I believed Ben needed.

I was not prepared, however, for how easy it was to put it all in place and how fast the transition would arrive.  I sent that email four weeks ago, and Ben just finished his first week at his new school.  Long story short, Ben's dad and I observed the AU classroom, met the teachers, instantly became convinced that this classroom was the best learning environment for Ben, sent an email, had an ARD scheduled, had that ARD on a Thursday, and Ben started the new program the following Monday.  Done. 

If I had any idea it was going to be so easy, I would have done it as soon as we had his diagnosis from the district.  There were a lot of things I didn't know, though, like that I could ask for the AU placement, whether or not they had room for him in it, and whether or not the district would fight me or if all of the adults involved would do the right thing for Ben.  Fortunately, it was a unanimous decision and to every one's credit, it was handled easily and efficiently.

The best part, of course, is that Ben's new classroom is a much better fit for Ben.  It is a more restrictive learning environment than his previous one, which is not usually the way one wants to progress through special education programs, but it is more appropriate for him.  He had "regular" peers in his old one, but a large teacher-student ratio.  Now he has a classroom of six students and three adults.  Now he has a classroom with a fine motor skills table and a school with a sensory room for meltdowns, instead of just a sad face mat for time out.  Now he has a teacher with a great deal of Autism experience and knowledge for how to help kids like Ben.  Now Ben likes to go to school, and I feel sure he is much more comfortable in his new classroom.

I was terribly worried about the transition, as all transitions are scary and difficult for Ben, and he did scream the first day and kick his shoes off and try to follow us out of the classroom.  But it was just one day of trauma.  He reportedly walked right into that classroom the other four days of the week without incident.  One of the trade-offs of having him at this school is that I can't take him.  It is too far from my school and I would be late to my own first period every single morning.  Thankfully, his dad is taking him everyday, but I am sad about not being involved in that aspect of Ben's life.  I do talk to him about school every morning while I get him ready, and those conversations have been more positive on his part this week.  I can tell he likes it and feels happier there and I am thankful for that.

The moral of this story is to ask questions if you are not satisfied with your child's education.  I know there will be times in the future when the answers will not be not as easy as they were in this instance, but the result of having an appropriate, safe, happy learning environment for your child is well worth whatever pushing you have to do.  I am saving that tantrum I was going to throw in case I need it at a later date.  You just never know.