Another shot of The South End

8x8 oil on canvas board
$50.00

My weekend "recap" with Hailey

I spent a very satisfying weekend with Hailey. Giving Tommy and Natalie a short time alone is always my gain. However fitting everyone in my bed is a bit challenging. Usually when I go up to bed it is just me and Benny (my very spoiled yellow lab). Most nights Benny jumps up and lies on the bottom of the bed until he hears my husband coming up the stairs, then he quickly grabs his spot in the bed along side of me, head on his pillow and pretends to be asleep. My husband gets in bed and says "oh no you don't" and Benny grumbles hmmmmXO!%! and reluctantly goes back to the bottom of the bed, he knows that Tom will kick him off the bed if he doesn't, Tom can't stand it, he only puts up with it for me. Saturday night Tom comes up to get in his bed and between me on my side, Haily stretched out in the middle and Benny kind of at the bottom but inching his way up a bit, poor Tom only has bits and pieces of the bed to fit himself in, it was like a jigsaw puzzle. I pretend to be asleep because I don't want to give up what little space I had. Finally with much strategy Tom manages to fit himself in the bed and I hear him grumble "you have to be a contortionist to sleep in this house" I silently laugh to myself and think, thank God I have such a good husband.

Sunday morning I decide I am going to go food shopping and really take my time and make this an educational but fun trip for Hailey. We get to the supermarket and while going through the fruit aisle I hand Hailey a bunch of bananas, I say "mmm YELLOW bananas". She holds them as best she can, turns and drops them in the back of the carriage. I say "good job" She looks up at me and signs the sign for cookie. I say "I know honey we'll get a cookie later" and I keep strolling and I hand Hailey a pepper and I say, "mmm GREEN pepper". Hailey drops them in the back of the carriage. She looks up at me and gives me the sign for cookies, I reassure her that she will have one later. We get to the cookie aisle, of course Hailey spots the blue package that she is sooo familiar with... oreos. As I try and trick her and sneak quickly past them, her arm extended in their direction I say "Oh do you want cookies" and she smiles at me as if to say yes. I hand her the cookies and say "mmm Blue cookies" she holds them on her lap until I convince her to put them in the back of the carriage. She drops them in back and we continue to shop this same pattern repeated the entire time. (Thank God I didn't need eggs)! The whole time we are shopping i'm wondering how much Hailey is actually learning, is she understanding and retaining anything i'm saying? Then I thought, she is asking me for a cookie every five minutes, she must be wondering the very same thing... Is Grammie understanding anything that I am saying? When we finally get to the check out I start taking the items out of the back of the carriage and placing them on the conveyor belt, I can't help but laugh as I take out the crushed cookies, squished bread and a Mickey Mouse balloon. It is always a fun and educational adventure with Hailey.

Later that day Tommy and Natalie come to pick her up, It is dinner time and I suggest we go to Friday's for dinner, We are trying to get Hailey to interact with other people and also know that she can advocate for herself when she wants something. What she has learned for sign language is rather limited right now, we really need to start learning more words and begin to put sentences together, but since Hailey's signing repertoire mainly consists of the important things in life such as cookies, ice-cream and crackers we will let Hailey order what she wants for dessert. After dinner we tell her she needs to tell the nice man what she wants and she looks him directly in the eye and with her left hand she clenches her fist and gives the sign for ice-cream, of course we have to translate for him, it's easy to miss her subtle signs if you don't know what you are looking for. We clap for Hailey and praise her for her accomplishment. Hailey anxiously waits for the waiter to come back with her ice cream. He keeps walking by with plates of food, but he walks right by her. Each time she is looking and looking, not fully understanding why he is not bringing her ice cream right out. Every time he walks by, Hailey is giving him the sign for ice cream only he doesn't hear her, but we hear her loud and clear. We can't stop laughing. We knew exactly what she was saying. She was saying "hey, get over hear with my ice cream. To us Hailey speaks louder than words.

A Cerebral Palsy Thing

Today we started our day by bringing Hailey to a Doctor's appointment at Waltham Children's Hospital. This appointment was not because Hailey was sick, she was not getting a shot, she was not getting poked and probed, she was simply having a doctor look at her to see if her Bodysuit (what she wears to help her core strength) needed to be adjusted or if she would benefit from a new suit. However Hailey still screams bloody murder by the mere site of the doctor. I often wondered if she will ever get over this fear of the doctors, but the more I read about Cerebral Palsy the more I learn that it is in fact a Cerebral Palsy thing. What I mean by that is that Hailey is very uncomfortable with anyone outside of her immediate family. She has a very difficult time with strangers, with playmates and even at family outings or holidays when a lot of family get together. From joining networks like The Cerebral Palsy Awareness Group, and Exceptional Family T.V. I was able to learn that this is not uncommon for children that share her disability.
I thought that I would try and get Hailey used to being with people, after all she is starting school this summer and I think that this is going to be a very big adjustment for her, even traumatic initially. So off we went to story time at the Blue Bunny, I thought this would be a piece of cake, Hailey loves to read books. How bad could it be. Hailey watched all of the happy children skipping in the door and finding their bright colored floor mats, crowding all around her as they plunked themselves down on the floor. Hailey screamed and pointed to the front door. I wasn't about to let her get her way, I distanced myself from the group and tried to change her focus by showing her toys and trying to read her a book on the far side of the room. I must get a new bag of tricks, I had no choice but to leave, it was too disruptive and unfair to the other children.
How is Hailey ever going to transition into the classroom? I worry about this everyday. She is learning sign language but it is her own personal sign language. Because her motor skills are affected, unless you are around Hailey everyday you are going to miss the couple of signs that she has learned... I know that Hailey does not speak but her beautiful smile says more to me than words could ever say.