A letter to Lively's class

Dear parent of a healthy "normal" child in Lively's preschool class:

I understand that it is completely normal that a 2-year-old would be curious as to why his new friend at school gets some food, water, and medicine through a tube in his belly. Your child has probably never seen anything like this before, and it may seem funny, or weird, or even a little scary to him.

But you're a doctor, right? So in all your years of training, you must have learned that some people can't eat or drink everything they need with their mouths. And certainly you must want your child to grow up showing compassion and love and friendship to others, even others who may have one too many holes in their bodies. Surely you can explain these things to your child at home, and you can teach him that Lively is a happy, playful, fun, and loving little boy even if he has a small physical difference from your child.

Surely you wouldn't come into Lively's classroom, telling his teachers that your child is coming home telling stories about Lively getting fed through his stomach, and what's the deal with that anyway? And don't the other kids and parents deserve an explanation?

Oh wait. You did do that?!?! You think the class, the school, needs an explanation of what Lively has been through the last 2 years of his life?

Well, go f#@% yourself.

Sincerely,

Lively's mama

Good things

So much has happened. 

Lively started going to Annie's preschool September 6. I was nervous about sending him, but excited too. Pete and I really wanted him to be around other kids and hoped that he would be inspired to eat, play, and connect with some new people. So far, he's done exactly that. The first week or two, he was a little sad when we dropped him off, but now he gets excited on the way to school, walks happily down the long hall to his classroom, says "Hi!" to his teachers and friends, gives me a hug and a kiss and then pushes me out the door. He's talking a lot, mostly single words, but lots of them, so many that I can't even begin to update the list I started a couple months ago. Some of my favorites:

• "Hi yogurt!" with a big smile, when I sat down to give him a snack the other day. (We had been out of yogurt for awhile, and Pete had just gotten some more for him.)

• Annie 

• Jack (the name of our cat, and the word Lively uses for all cats)

• I love you (repeated back to me when I put him to bed at night)

Also on September 6, I took Lively to see Dr. Richard Solomon, who is basically an autism specialist. He's the same doc that I had been hesitant to see because he's in private practice, doesn't take insurance, and costs quite a lot. But I finally made the appointment for Lively with him, because I felt like Lively needed more than what he was getting and because quite a few people recommended him to me. So we went. And here's what happened:

1. Lively was instantly crazy about him. He looked Dr. Solomon delightedly in the face, and approached him to play with him. Lively was so obviously happy and relaxed and joyful in this doctor's presence, in a way that I have never seen him be for an extended period of time with any other provider, that it was obvious this doctor understood my kid. I had to trust him.
2. Dr. Solomon confirmed the diagnosis of autism spectrum disorder. 
3. Dr. Solomon talked with an authority and expertise about autism that I have not encountered with any of the so-called specialists we had seen already. He knows the studies and the treatment options and the theories and the data behind all of them. 
4. He talked to me about prognostic indicators. The two best ones: any speech before the age of 3, and the ability to follow one-step commands. Lively does both. (I said Lively, jump! And Lively stood up with a big smile on his face and jumped.) "This is great news!" Dr. S said. Lively is likely to do really well. He may be able to go to a normal school! He can make friends! He may go to college! He may fall in love and get married and have babies and have a happy life! No one until that day had said any of these things to me. I had asked other doctors, therapists, etc, and they all sort of averted their eyes and said, we'll just have to see. But this doctor, who seems so knowledgeable, is the first person who has given me hope since we started down this autism road. He said, "Lively's prognosis is excellent." Excellent!
5. He doesn't think Lively is cognitively impaired. Lively approached Dr. S at one point and grabbed both his hands (I've never seen him do that before) and Dr. S sort of shook Lively's hands to a rhythm. Then Lively turned to me and picked up my hands, obviously wanting me to do the same thing, so I shook his hands to a different beat. Then Lively went back to Dr. S and grabbed his hands again to do yet another rhythm, all the time smiling, making eye contact, completely engaged with both of us. And Dr. S said, "Look! He's not cognitively impaired. He's smart! He just invented a game!"
6. He offered us a treatment plan. Basically, a therapist will come to our home or maybe sometimes Lively's school, and will teach us how to engage Lively to help him connect emotionally with us, and ultimately with other family members, his teachers, and friends. Instead of meeting certain goals set by a program (for example, teaching him his colors or numbers or ABC's) we stay flexible, follow his leads, base our interactions around the things he loves to do. We focus on social skills and emotional development where other programs put kids through academic drills and try to develop competence in specific skills. The theory behind Dr. Solomon's therapy is that you start by helping build the emotional connection, and the rest (language, cognition, etc) naturally follows. He's been running this kind of program for over 10 years now, and he really thinks it will help Lively. And I believe him.

I can't even explain what it feels like to have been given this hope. We have been living without it for so long now, with our hope being taken away from us little-by-little, that it wasn't until someone trustworthy gave it back to us that Pete and I realized how bad we had been feeling. I can't explain how being able to hope again for things we thought we had lost has changed us. I feel like Dr. S had lifted away a weight that has been sitting on my chest, and now I am light and I can breathe again. Or perhaps fly.

We start with the P.L.A.Y. project in December or January. We are going to have to live on peanut butter sandwiches for awhile to make it work, but we all love peanut butter, so it's OK.

And speaking of peanut butter sandwiches, we started adding gluten and dairy back into Lively's diet, and he's doing just fine. He's eating more and more, probably because he has more choices now. He struggles with some textures, but for flavors that he loves (crackers, pretzels, corn chips, cinnamon cheerios) he manages to chew and swallow with no problem. We're not able to get enough calories and volume in him by mouth yet, and we usually give him formula and water after dinner, but we stopped giving him tube feeds overnight 2 weeks ago, and it's going really well. He's lost a little weight, which scares me a bit, but he's hungry during the day and he's learning how to eat! Now if only we could get him to take his medicine by mouth. Still, good things.