The chocolate boy

Can a boy who is allergic to milk have a friend made of chocolate?

When Lance was 3 going on 4 he understood he had a very bad allergy to milk. He didn't know why but he understood that he could not have milk or chocolate or a lot of things everyone else was having.    He was newly enrolled in pre k and the first few weeks of school were spent in a series runs down to the school and back putting out " emotional fires" Lance did not have language enough to explain what scared him what hurt or set him off. He was like a live wire in a puddle sparking off unexpectedly. 

The teachers were reluctant to call me feeling that I would make it worse because I was a over protective mom according to one teacher.  I explained to them his difficulty communicating and that he used a mix of  sign and representative sounds and a very few words. They knew better than me apparently because they just could not make sence of his language. He was so frustrated it's not funny. 

He would come home red faced and crying every day, itchy and covered in hives. Every day a dose of Benadryl and some time under the turtle shell with his nebulizer till he could breathe was our new routine. When asked what was happining they had no answers other than he cried and would not play and then he would sleep and not wake up. 

Finally I put myself in the class for a full week they tried to have me removed but I would just come back. As I observed the class and helped Lance play with others and take his speech therapy and o/t I noticed he avoided certain children. He would laugh when they played with others but freeze up when they came near him, lunch was a challenge because he was put totally alone because of his allergy to milk and even the kids with nut allergies were not so separated.  When I pointed this out to the teachers and para they insisted that he would throw a full out tantrum if he was put with certain children so they just let him sit alone. 

The children he was avoiding were all children of color!  I was very puzzled by this we have many friends of color ranging the spectrum from black enought they shine blue in the dark to cafe au'Le to Chinese and Puerto Rican ( my husband Is light skinned Puerto Rican but some of his family is dark too) and even more.. Why is this suddenly a problem. 

I sat and was talking to Lance softly and slowly.  

Why was he avoiding the boy who would smile and wave to him every day.  

Lance signed no friend no more! 

Why?

Lance signed chocolate

And he rubbed his arm and made a choking sound.

"Baby he doesn't have chocolate you can play with him it's ok" 

Lance shook his head rapidly signing and saying " NO NO I hurt mommy no I hurt"

Now my mind is racing how is he hurt? Who hurt him? How do I figure this out? 

"Lance are you afraid of Brandon?  Did he hurt you?" 

Lance tells me not the chosen one not parev... Now I am really confused,  The Chosen One is one of my brothers best friends Maurice he is the uncle Lance chose he made his own sign for him and all and adding parev the word for milk free foods in Yiddish is a weird combo.  Maurice is a handsome dark skinned young man who can melt anyone's heart with a smile. But what has he got to do with parev? 

So I asked lance one more time why he wouldn't play with Brandon he looked at me so frustrated and signed he's not parev like the chosen one! 

He's not parev? How can a person be Parev? 

I grab the teacher and ask her if they were paying before the tantrums got really bad. And they said yes but they had to separate them for lunch because Brandon always brings chocolate milk to school.  One day Brandon spilled the milk all over and they told lance to stay away from him he had milk on him. Then suddenly the light bulb went off 

You told Lance he was coverend in chocolate milk! 

Yes? Why? 

You told a 4 year old allergic child that his black friend was covered in chocolate! He took you literally and thinks all the kids who are of color are made of chocolate now!! He thinks your trying to kill him by making him play with chocolate children. Milk can kill him and he is in a class full of children made of chocolate. 

It took me two weeks to make lance understand that Brandon was not made of chocolate but really made of skin and bones and he could wash off any milk that was on his hands and mouth from lunch and be able to play with him. He thought Maurice really was special because he was made of parev chocolate   because he never had a allergic reaction to him ever. While my efforts did not eliminate the tantrums they did make it so he did not come home every day covered in hives and in a asthma attack because of crying all day.  So yes a highly allergic child and make friends with a chocolate boy and live to tell the story.

Tie them up baby

So today Lance tied his shoes. I know all kids eventually tie their shoes but lances hand eye coordination has never been good enough for him to do it. He has tried and tried over the years and he usually just gives up screaming or slamming things around from frustration.

At 15 not being able to tie his shoes drives me crazy because finding full velcro sneakers boots and shoes can be diffacult Espically since he wants somthing that looks cool,  and is velcro.

Here is the exchange
"Lance baby put your boots on and take out the garbage."

"Do you need it done right away mom?"

"No baby take your time."

"K"
About 15 or 20 minutes passed and I realized I never tied his boots for him. I go into the living room and ask him..

"Lance do you need me to tie the boots for you baby? I am sorry I forgot."

He looks at me an as bland as you please he says
"No mom I got it"

(Me inside I can't breathe.. blank stare... my heart is racing")

"Huh?"-  "show me baby?"
He lifts his foot puts it on my knee and the boot is tied perfectly..
I look at Robin "did you tie these for him?"

"No mom "

"Nope I tied them mom by myself."

15 years old and he tied his shoes and I want to do laps around the block and I can't.  He looks at me and I smile and I can tell he is not in the mood for a celebration.  I kiss his forehead tell him how proud I am and smile.

Lock myself in the bathroom and cry. And without me reminding him he takes out the garbage.

Today was a success!!

Play pretend?

Play Pretend....

We started out this journey with a child we were told would never walk, talk, hear, play or ever be in any way shape or form even remotely normal.
So we tried everything, we spoke to him constantly, we played constantly. We taught him sign language so he could communicate.

We were desparate and we tried everything. I realized early that he liked to watch TV. He interacted with the characters. He understood what was happening and could mimic some things. Through TV,  and Movies I found a way into my sons head, we pretended. We pretended that he was Bob the Builder, Harry Potter, Rolie Polie Olie, Max and Ruby, Inuyasha,  every cartoon that had a physical, verbal and mental use I used.  With Bob the Builder it was "Can we do it, Yes we can.  Can Lance show Mommy what he wants? "Yes he can.. now show me baby..."  he would Put on his Bob hat and go to what he wanted and show me and then try to say it.  It was fantastic.. Lance show me something the shape of Zoies dress.. (Zoie is Olie's little sister) and he would struggle and fight to get to a triangle shape and bring it back to me.
While that was fun and educational and very interactive. I never realized that in his head while he was doing these things he really thought he was Olie, Bob, Harry, Inuyasha and more.

 As a baby after please and thank you in sign language, one the other first things he learned to say verbally was "I can't".  I can't was his Answer for everything. It was frustrating for me and him. Because he really believed he couldn't, but would do the very same things he just said he couldn't as a character.  Hind sight is a beautiful thing now I see that he viewed himself as less.

Not good enough not smart enough.. just Not.

Being Lance is not a good thing in his head. Unfortunately Lance is aware.. he has always been aware that he is different. Aware that he couldn't do things the other children could.  When he was just 5 he came home from school crying yet again. He asked me to fix him. "Make me normal Momma fix me!" he demanded this so imploringly that I cried with him. He handed me his Bob the builder hammer screwdriver and level and cried.
 I never made him feel like he was lesser. Nothing was pointed out to him that he was different. I never looked at him and asked why cant you do this or be that.

When his stutter was so bad that he could barely be understood by anyone including me I never blamed him. I would tell him .. "Lance baby my ears hurt today can you take a deep breath and say that again slowly so I can hear all of it?" It was never his fault that I didn't understand. It was on me, or what ever other adult was there talking to him.

Who did this?  Why would someone make a child feel like they can never be good enough to be "normal". I can name some teachers, and at least one Principal that had a hand in my sons ego deficiency but more than anything its Lance himself.  He sees that he is different he knows he isn't like anyone else. But whats worse he can't see that all people are different on a one to one basis. No two people are exactly alike.

Now that he is 11 the problem of pretend has gotten worse.
Sometimes I use it to get him comfortable with doing somthing new. (I am guilty of many things and using my sons Abilities and Disabilities against him is one of them.)  He no longer pretends to be Bob or Olie. But Harry has hung around ( the family being fans of the books and movies hasn't helped that one)  to be joined by Nigel Marvin ( The television naturalist), Chef Elric The best master Chef ( a Lance creation) and a few others.  The problem with the pretend is that these "people" are Lances alter Egos,  I don't mean that Lance believes he is that person literally but he believes in their success so much that he can do what ever they do.  its a good thing and a bad thing, Lance  is a faster learner when he plays pretend as Harry, he remembers every detail about dinosaurs or animals if he is Nigel Marvin and when he Pretends to be Master chef Elric Lance can cook he memorizes Recipes and can do all of the steps that nervous mommy will allow.
But there  is a problem he My baby who is smart beautiful and perfect is never good enough in his own mind as just my baby.