Saturday, July 27, 2013

Hi my name is Joey and I'm 8 years old............

Hi my name is Joseph Andrew Stafford, I like to be called Joey. I am 8 years old and I am going into the 3rd grade. I love my family. I love going to school and hanging out with my friends. I really like watching my cartoons. Mickey Mouse is my favorite. I like playing baseball and I like to play rough. I like birthday parties and listening to other kids play. I especially love when others pay attention to me. I also like to go swimming (ironic).

Why is it ironic that I like swimming, well........................

When I was 1 1/2 years old I got into our backyard and drowned in the pool. I can't remember how I got in the pool. I could have slipped, or jumped or I could have been reaching for something, but really who can remember when they were 1 1/2 years old anyways. Well obviously I survived the drowning or I wouldn't have this blog for my mom to write in. I spent 5 weeks in the hospital (that's what mom tells me, I can't remember). From drowning I acquired an anoxic brain injury, brain damage due to lack of oxygen. I can't really remember much of anything when I was in the hospital or much of anything before the age of 4 yrs. So the rest is what my mom has told me. When I was in the hospital they didn't know if I was going to live or die. The doctors didn't know what I would regain or not. As I have gotten older I have gained a lot more of me back. The doctors diagnosed me with Cerebral Palsy.

Let me tell you what I can NOT do first. I can not roll over, get to a sitting position by myself or sit criss cross by myself for more then a few minutes. I can not stand without full support,  I can not walk without full support. and I have to wear diapers. I have a hard time using my arms for anything and I can not talk much. I can not feed myself or wash myself.

What CAN I do.....................I can sit for a few minutes unsupported, I can stand with help, I can walk with help and I can vocalize. I HAVE some words that come out right, but most of my words that you hear come out wrong. In my head I am saying a lot and I'm saying it right, but my muscles don't form the words right when they come out.  When you ask if I want something, I answer you. I can't help it you don't understand. I UNDERSTAND everything you say to me. I even try to do what you ask me, but you never give me enough time to respond.  I can eat really good and love all kinds of food.

Here are some things that aggravate me and especially aggravate my mom:

  • Look at ME and ask ME what I want, my mom will answer for me.
  • Say Hi and Bye to ME. Remember I can hear and UNDERSTAND you.
  • DON'T talk to me like I'm a baby(only Nana can).......I'm 8 yrs old, my birthday is June 28th, so next year Ill be 9 yrs old.
  • DON'T assume that I don't want to play. 
  • DON'T assume I don't want or like to go to the movies.........I love the movies.
  • DON'T assume I don't understand when I didn't get invited to your birthday party. It hurts my feelings.
  • DON'T skip over me in line. Just because I look disabled and can't communicate the same as you doesn't mean I don't UNDERSTAND.
  • DON'T stare and walk away. If you are curious come talk to me and ask questions, my mom loves to talk. Sometimes I have to fuss to shut her up.
There are a lot of things I wish I could do that you do, but I can't. I would love to go down a water slide or ride a regular bike or play hide and seek or drive race cars, but I can't so I make due with what I can do. My mom is great with modifying things for me, like my bike, but know one asks me to go out bike riding. There are a lot of things I can do, but is hard because my mom has to modify things and it's hard on her and usually takes twice as long, so be patient. I do have an ipad and a really cool wheelchair. These are my favorite things. I love to eat Mac and Cheese and Ice Cream. My sister and brother play with me a lot and this makes me happiest. I could sit all day on my dads lap and watch football. My mom always know what I want to eat and when I am hungry. My mom knows how much I am capable of doing so I can't fake it around her. However I can play my dad and grandparents good, a little fussing and I have them wrapped around my finger. 

So parents, your kids will treat me the same as you do. If you ignore me or push me aside or assume I can't do something or stare, then your kids will to. No one will ever learn. 

So I have one favor to ask you.........Please treat me like a typical 8 year old, I like it better.

Side Note - Read 'Out of my mind" by Sharon Draper about a girl with CP, true story.

Also watch this news report about a girl with severe Autism, 

Monday, July 8, 2013

HERE WE GO AGAIN ON OUR OWN...............................

I'm already tired and I haven't done anything yet.

Yesterday Joey and I left on a 3.5 hour tour down to Pine Valley for 3 weeks of Intensive Suit therapy for Joey. The drive was easy with no traffic. Joey slept half the time, so that was good. Our challenges began when we checked into the motel. Joey began to fuss and fuss some more and fuss some more. He doesn't like to be out of his comfort zone (our living room). Of course going to bed was difficult, so I had to snuggle with Joey all night which doesn't allow me any sleep. Joey slept great.

Pine Valley is super super small. Three places to eat, a little market/liquor store, fire station, police station, little little library, gas station, park and motel. That's IT! NOTHING ELSE, NO KIDDING, NOTHING! I think I'm in culture shock. I will be pulling my hair out by the end of this week. Unfortunately we will have to eat every single meal out. The coffee shop employees will know us well.

I am very nervous about how Joey will do. It has been a few years since we have done this therapy. Joey's body has changed so much and not necessarily for the better. He is more cognitively aware which is great, but means he will fight us more.

Please send positive thoughts our way for a great therapy session and for boredom not to set in.