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, 

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.

THE MAGIC BULLET

The Magic Bullet, the best invention EVER! Many years ago one of my BESTEST friends gave me one. You can use the Magic Bullet for many things, such as mixing drinks, making salsa's, making baby food, grinding food, etc. I used the Magic Bullet for Joey's food for 5 years. I used it religiously. At first I had to grind and mix his food so it could be administered through his feeding tube, then had to make it into mashed potato consistency, then got to the point where I only had to use it for his protein (red meat, chicken, etc). It traveled with Joey and I all over the world. When we finally blew the motor on it, I suffered without it for about 3 days before a new one was delivered to my door (again from my BESTEST friend). If someone didn't wash it right or put it away wrong I would stress out. That is how important the Magic Bullet WAS in my life.

Did you read that? I said WAS.

Living with Joey, watching him grow, is like watching grass grow. You look at your lawn everyday and it is hard to tell how much it has grown, until someone points out the fact that it is time to cut your lawn.  Well this is what happened with the Magic Bullet. I didn't realize I haven't used the Magic Bullet since before January until my babysitter asked me about it.

What does this mean? It means that Joey is growing up, he is progressing, he is improving. He does not need me to grind up his meat anymore. Yes, he can eat a chicken nugget and he can take a bite of a hamburger and he can NOW chew red meat long enough to swallow it without choking. I no longer need to feed him like a baby.

Many might think SO WHAT! Well 6 years ago when his feeding tube was put in and Dr's said it would never come out and he would always be tube fed and will never be able to drink and will not do much of anything, that's WHAT! His feeding tube is OUT and he can eat whatever I can eat.

People will always ask how Joey is doing and it's hard for me to see that he is improving. Remember, living with Joey is like watching grass grow. Then I get little reminders that he is always changing. He has NEVER really hit a plateau in his healing, just when the obvious is not showing, the less obvious is healing.

So I am not giving up the Magic Bullet completely. I am now just going to use it for my Margarita's.

CHEERS!

PHEWWWWW..............

Phewwwwwww.......................things are finally starting to get back to normal. 

January 25th Joey had tendon release surgery. The surgery went good. He was put in long leg casts with a bar between his legs keeping his legs spread. He was miserable. He was in the hospital for a total of 7 days between the surgery and the allergic reaction he got from his medication. For the first 2.5 weeks after surgery he was miserable. It took us that long to control his pain and even then I don't think we did a very good job of controlling it. When his long leg casts came off at 2.5 weeks, short leg casts were then put on for 4 weeks. He managed to tolerate this much much better. He started to get his smile back. We ran into a couple complications after surgery, nothing major, but things we had to constantly keep an I on. His nerve in his left leg was going haywire, it has now gone back to normal. Also one of his incisions opened up. It is still open, but no infection and is getting better.

So that brings us to present time. Today Joey's casts finally came off. It will take approximately 6 months for him to get back to normal. We will know within the year end if the surgery worked the way we intended it too. He will need a lot of therapy to get him where he needs to be. When school is over he will start an intensive session of PT in San Diego for 3 weeks.

Joey just started baseball again for the spring. He played 2 games already and wasn't a happy camper. So we will see what happens. I also have been having some issues with his teacher in school. So I called and spoke with the principal and she had him moved to a new classroom in less then a week. I met the new teacher today and I love her. So all is good there.

The family is now getting ready to go on a vacation for a week. Joey will stay home with a babysitter, he does not like leaving the house, which brings us to selling our RV. It's hard to take Joey camping anymore so the RV is going bye bye. Maybe in 5/6 more years we will get another one when the kids are grown up. We sure did have great times in that RV. It will be missed.

Nice to get back to normal. PHEW!

Well 2013 started off with a BANG!

On January 25th Joey went in for tendon release surgery on several areas of is legs. The surgery went great. It took a little longer then originally stated (2hrs longer), but everything was great. The hard part was seeing this super happy boy laughing and smiling and talking up a storm before surgery to a little boy who is in pain and fussy after the surgery. Joey was casted from groin to toe.  He will be casted for 3 weeks in long casts then 3 more weeks in half casts. He has to lay flat and over a 3 week period slowly get him back to a sitting up position. We were then sent home on Sunday morning.

On our way home Sunday.

Chilling at home before the return to the hospital

Well the excitment then begins............we noticed a rash on Joey's body. We are aware that he has an allergy to meds, so we stop his meds. We were a bit to late. The rash got worse very very fast and the pain kicked in and we ended up in the emergency room and them addmitted back into the hospital. The rash progressively got worse in the hospital. They have him on a topical steriod cream and an oral antihistamine. So now we just wait it out. Still in the hospital, hopefully go home before Saturday.

First day of rash.

During Joey's adventure, back at home his great grandma was dying of cancer. Back in Novemeber she was diagnosed with cancer. Dr. gave her 6 months to a year, well she must have been in a hurry to see her hubby. Saturday morning she passed away. She was an amazing woman. Stronger then any other 90 year old I knew. Her memorial is this Saturday.

Joey and Buba

So between Joey and Grandma, Jeremy and I are working on little sleep. My nights have been spent in the hospital with Joey. We are both emotionally and physically drained. We are hoping that in the future we look back at this and laugh, ok probably NOT! However we know like everything else we encounter, we will conquer and over come.

We got a quick smile.

That is were we stand now. I will update once again in another week or so.

BYE BYE 2012.......HELLO 2013

And another year comes to and end.......we all became a year older. Joey turned 7 in June, Jessica is 15 and Jack is 12.

JOEY
Went from 1st grade to 2nd this year. He is working alot with switches in school and walks in his gait trainer all over the place. He loves the bus rides to and from school the best. He continues to improve in physical therapy. He also goes to Hippotherapy (horse back riding) and gets behavioral therapy. We took a few trips to Arizona for ABM therapy and started and stopped speech therapy.

Joey has decided that he DOES NOT like camping anymore. He rather stay home. So the dogs babysit while we go camping. He did however go to camp for the first time this year. He went all day and got to go on some great field trips. He also went surfing for the first time ever. He had a great time and ironically loves the water.

Joey has grown tremendously over this last year. He is approx. 50lbs now and 46in. He got new braces for his legs and new sporty glasses. We even had to expand his wheelchair. He also got a new gait trainer at school. He has been outgrowing his clothes before he has a chance to wear them all.

Like always, Joey is the happiest kid alive.

JACK
Had a great year with school. He started middle school this year and is in the 7th grade. He is doing very well in school. Jack had his best year of football yet. His team went to Las Vegas for the National Championships and won for the third year in a row. Talk about growing. Jack grew about 6 inches and is now just taller then me. He wears the same size shoe as his daddy now and he is only 12.

This summer Jack went to sleepaway camp for a week while the rest of us went to Lake Powel on a house boat (Joey stayed with babysitter). He had another incredible time. He also has been studying really hard for his upcoming Bar Mitzvah.

He is turning into such a young man, however I don't know that I'll survive the teenage years.

JESSICA
She started the 10th grade. Ended 9th grade with a 3.8gpa. She has a lot of AP, CP and Honors classes this year. In spring she played softball for her high school team, but injured her shoulder so didn't get to play more then a few games. After our summer lake trip she had surgery to repair her shoulder, no more softball for her.

She is growing up fast and started her first job at our Martial arts studio. She is a hard worker and doing great. Very typical teenage girl and loves to go shopping all the time and hangs out with her friends every chance she can get.

JEREMY and I
Just booking right along. During the summer we hosted a couple teenage girls from China and had a great time showing them around and learning about each other. We also took the kids to San Francisco to see the kids first NFL game. Had a great time. Trying to soak it all in before it passes us by to fast. We celebrated our 16 year anniversary and went on a few little trips. Like usual, we are working hard and enjoying life.

2013
As 2013 comes around, we already have a lot on our schedule.
On January 16, it will be 6 years post accident. Jack will ask many times what our life would be like if Joey didn't have his accident......I don't know. I can't even imagine it anymore. Our lives are very happy, just a bit more difficult to handle many days and takes more time to figure stuff out and yes there is a lot we can not do because of the limitations with Joey, BUT we do our best and have smiles on our faces. Everyone is HAPPY!
At the end of January, Joey will have surgery on his legs to realease his tendons. It will be rough going for a couple months. Joey will be casted from hip to toe for 6 weeks and will not be able to sit up in his wheelchair for awhile. He will regress slightly in his physical abilities, but with a lot of hard work he should bounce back fairly quickly.
Just as Joey's cast comes off, the family will be going on a cruise to relax from it all. Joey again will stay home with the babysitter, he prefers this.
Joey will be signed up for baseball and Jack will begin track and field again. Jack will also do some football conditioning to get him ready for the football season.
At the end of April Jack will have his Bar Mitzvah.........after 8 years of studying, he will be finished with religious school. We will have a big party to celebrate.
I am hoping that in June I will be able to take Joey for some intensive physical therapy to help recover from his surgery. Also head to Arizona for some more therapy.
Then in October Jessica turns 16 yrs old and will get her drivers licsense. OH MAN!

My hopes for 2013 is that Joey has a very sucessful surgery and recovers quickly. That he stays very healthy and happy. I hope the other kids continue to do well in school and have fun in their sports. I hope our business continues to grow and that Jeremy and I can not stress so much about life. I pray all my friends stay healthy and happy this year.

Joey is FAMOUS!

Joey has been very popular the last couple weeks. A couple weeks ago Joey was in our local paper for his challengers baseball league. Then yesterday Joey, his therapist Michelle and I were interviewed regarding drowning. Here are both articles. I want to say I got my 15 minutes of fame, but I think it is actually only maybe 1 minute. Joey just eats up the camera.



TEAM SPIRIT—Six-year-old Joey Stafford of Simi Valley laughs as he crosses home base with help from his partner during a game. Photos by IRIS SMOOTAcorn Newspapers

I know it has been a few months since I have updated about Joey, so I am going to try and catch up now.


Joey has been doing fabulous in school. He has many friends and loves riding the school bus.  During his most recent IEP meeting, I have found out that he has met most of his goals, Whoo HOO! Next year he will begin 2nd grade,  he will have a new teacher, but same school. He just got a larger gait trainer and is getting another chair so he can sit with the kids at the desks in school. He has out grown his other ones.


Then most recently, Joey has lost his upper left tooth. That makes 3 teeth now. His bottom left permanent tooth is already growing in. My daughter says he looks like Shmolie from the movie "The Boy with the Stripped Pajamas". Guess I need to see the movie now.


Back in March Joey did another round of Botox and serial casting on his legs. Well the concern this time is that it didn't really work. He got new braces that don't have any, whatsoever, bend/give. He also got special night time braces to wear. So he is in his braces approximately 23 hrs a day. This seems to be working well. We are going to do another round of botox and casting in September with a higher dosage of botox and cross our fingers that it works, otherwise we discuss surgery. Yes, surgery the last resort. We will have the surgery discussion in January. So again, cross your fingers everyone that the braces and botox work.


Alright, that brings us to present time. We are having a change in Joey's therapy. His PT is moving on to bigger things, not better, just bigger. ha ha ha So with that, Joey gets put on a waiting list for a new PT. Who knows how long this will take. This also means no more Hippotherapy (horse riding), his PT was the one that did that with him and they do not have another PT that is qualified to do it with him. Good news is though that I have a friend that has 3 horses and she said we can put Joey on her Blue whenever we want. Also Joey begins speech therapy. We have been on the waiting list for speech therapy for 1 yr. He begins in June. We also head back to Arizona in June for more Movement Lessons with Michelle Turner. This therapy works amazingly with Joey. I just wish we could go more often. Then in August we go to San Diego area for 3 weeks for some intensive therapy session. He gets to work with one of his original occupational therapist, the best around. He will also attend summer school for 4 weeks. Yes, he is very busy.


And on to some every exciting news. I have signed Joey up for summer camp. The camp is for special needs kids only. It is run through a Jewish Foundation, so you have to be Jewish, yes we are Jewish. The camp cost us nothing. The kids go on a few field trips. Joey will get to go on a special helicopter ride. He also gets to go to Disneyland. Actually our whole family gets to go to Disneyland. The camp pays for a room for us and everything at Disneyland. The best part is this trip falls on Joey's Birthday. Yeahhhhhhh for Joey.

Heading out on a camping trip over Mother's Day weekend

Well that pretty much sums up Joey over the last couple months and his future plans.

A Poem

My daughter had to write a poem for english class about a child who's childhood was interrupted. So of course she wrote about Joey. I got teary eyed listening to it. Here it is:


Joseph Andrew

Joseph Andrew so cute and sweet
He is definitely someone you’d be lucky to meet
So smart, that even at one year old he could bulid a perfect fort
Never knowing that one day his innocent childhood would be cut short

Who knew that one curious kid and one wide open gate
Would ever determine the little boys fate
It was a families worst nightmare came to life
This feeling of sadness was worse than being stabbed with a knife

The pool in which he did drown
Brings nothing but a hidden frown
But thanks to god and the miracles he’s made
My little boy’s life did not fade

His smiles and laughs bring sudden joy
He will always and forever be my little boy
I love this kid with all my heart
And I know that no matter what happens we will never part

He may not do what most normal kids can
But to me he will always be better than them
The strength and endurance he had to push through
Has made me want to be a better person and sister for Joseph Andrew

NORMAL!

Everyday starts with getting out of bed, waking all three kids and begin getting ready for school. It takes Jessica over a hour to get ready, Jack takes about 30 min. and Joey takes about 45 minutes, this includes eating breakfast. Pretty NORMAL right! Off to school they all go and off to work I go. At about 1:30 I begin my rounds of school pick up, first Jessica, then Jack and then Joey. From school they all go to there extracurricular activities, Jessica softball, Jack track and depending on the day Joey either has horseback riding, baseball, or therapy. Pretty NORMAL right! OK maybe not to 80% of society, that going to therapy is NORMAL, but in my world, it is very NORMAL!


In my world, taking my child to get botox and casting (BTW he has casting now and is doing great with it) every 9 months is NORMAL! Going to therapy 5 days a week is NORMAL! Meeting with various people for evaluations all year long is NORMAL! Going to a Neurologist and Orthopedic and Optometrist and Pediatrician a couple times a year is NORMAL! Having a stander and walker, special bath chairs and feeding chairs, sensory toys, my special blender and chopper for food is all NORMAL! Having diapers and wipes for the rest of my life in my house and having a handicap accessible van is NORMAL!

Joey being NORMAL!

MY LIFE IS NORMAL!


UH! you ask! How is that all NORMAL?


Well for 20% of Americans, this is a NORMAL life. 

Jack being JACK! NORMAL!

It gets really frustrating hearing other people always wish their lives to be NORMAL! NORMAL is what YOU make your life, not what defines your life. It might not be the same NORMAL as your neighbors or friends or family around you or even 80% of people in your life, but it is your NORMAL, embrace it. Learn to live your life your NORMAL, because your NORMAL will never be the same as anyone else's NORMAL! 


For all my friends and family that don't think their lives are NORMAL, stop for a second, stop for a minute, STOP! Your life is NORMAL! Your life is what you make it. Make yourself happy and everyone around you will become happy. Do for yourself, so that your family can live a NORMAL life.

Jessica, love her!

My family is NORMAL! I love our NORMAL! I don't even know that I want to deal with someone elses NORMAL. I have a very happy NORMAL!

My AMAZING Son!

4 DAYS AGO!

4 DAYS AGO! I can't believe that 4 days ago life just went on like normal. The last 4 years I would have gotten all emotional and would have been slightly depressed, but not this year, not on the 5th year. January 16, 2012 marked the 5th year since Joey's accident. Even though the day went by like any other day and I didn't realize what the day meant on that day in 2012 doesn't mean I have forgotten. It seems that I refer so much of my life to 'before the accident' or 'after the accident'. However, I am glad that life has become normal, so normal that the good anniversary dates precedes over the bad anniversary dates.

So much has changed over the last 5 years, SO much that I am not going to go through everything. I'll just talk about the last several months.

SCHOOL

Joey is in the 1st grade. He loves school. He loves all the kids, but he loves the bus ride to school the most. He is meeting all his IEP goals and is really learning a lot. He has a great teacher and great aides who really cares about him.

HOLIDAYS

We had a very busy holiday season. We do Hanukkah with 1 side of our family and Christmas with the other side. My SIL from Idaho and my 3 nephews and niece came to stay with us. Joey had a great time with all the noise in the house. However about 4 days into vacation Joey got sick. This is the first time in 2 years he got sick. It lasted about 1 1/2 weeks. Poor guy was so miserable. His body gets so tight and its hard for him to clear his throat. Of course he was better by the time school started.

DOCTORS APPT.

At the beginning of each year we do our rounds of dr. appt's. We started with the regular pediatrician appt. He grew a couple inches and has gained 5 lbs. He is a growing boy. He is in the 25 percentile for his age, which is really good for a child with CP.
Then we saw the Neurologist. The Neurologist gave him a clean bill of health and sent us on our way. We don't need to see him until next year.
The most dreaded appt.'s of all is his Orthopedic appt.  This is the appt. were we check his hips for dislocation and his spine for  curvature. Xrays show that all is perfect. He does have to have botox again. We need to do botox every 6-8 months in his calf's, hamstrings and abductors. Then we do serial casting on his legs for 4 weeks. So the dreaded appt. turned out to be not so bad.

THERAPY

Therapy for Joey continues. He gets private PT 1x a week and Hippo therapy 1x a week, then in school he gets 1 hr of PT and OT a week and gets about 30 minutes of vision and speech in school. He also gets CME (Cuevas Medek Exercises) therapy for an hour a week. I am also trying to get Joey to Arizona for ABM therapy every 4-6 months. At home he gets Behavioral therapy 3x a week for 3 hours. However, his behavioral therapy is more like a combination of all the therapy listed above. He is continuously progressing. He can sit by himself for about an average of 12 minutes. He is learning to reach and touch his ipad for communication and he is learning to express his wants through speech. His cognitive ability is increasingly improving. He is also walking everywhere in his gait trainer at school. He is working really hard.

Well that's about it in a nutshell.

Hoping everyone has a HEALTHY, HAPPY, and WONDERFUL 2012

Child Disability Terminology Primer-for those without a disabled child who don't have a clue what we're talking about

I stole this from another parent with disabled children.

Child Disability Terminology Primer-for those without a disabled child who don't have a clue what we're talking about

By Roy L. Ellis (with a few modifications)

ADA (Americans with Disabilities Act): This is what those morons do who illegally park in handicap parking spaces.

AFOs (ankle-foot orthotics): Lesser known martial arts weapon designed to inflict maximum body damage on the parent or caregiver of a disabled child when they're spasming and kicking the #$%^ out of you.

CP: Some say this stands for Cerebral Palsy. It's pronounced See-Pee on account of that's what the parent does for the rest of their life, well that and the chunky brown stuff too.

CVI (cortical visual impairment): Loss of vision caused when the eyes work OK but the brain doesn't. Most commonly seen in parents of children with brain injuries when the parent leans over to kiss a child in a wheelchair thereby triggering the child's startle reflex resulting in parent's eye being gouged.

EI (Early Intervention): Government program designed to keep parents from strangling the so-called experts who think they know more about their child than they do.

HBOT (HyperBaric Oxygen Therapy): One of the more creative ways of putting additional pressure on families with a severely disabled child. The theory is that if they squeeze you enough they can get more money from you.

HIE (Hypoxic-Ischemic Encephalopathy): Technical term for brain damage due to lack of blood and oxygen. One of the many causes of cerebral palsy.

IEP (Ignored, I mean Individualized, Education Plan): This is a document that supposedly describes what your special needs child will be doing in school all day. A group of experts employed by the school district comes together once a year to make guesses as to what your disabled child will be doing a year from now. They then list highly specific and individualized therapies and procedures to assure the child actually achieves that and put them into a document that suspiciously ends up looking exactly the same as everyone else's IEP. They then mail copies of the document to everyone who promptly ignore them.

Insurance: Your new full time hobby after your company realizes your child is a million dollar baby and takes advantage of every loop hole.

I Love You: Something other parents get to hear from their child.

Legally Blind: A condition that causes stupid adults to approach a disabled child's parent and say, “I don't know if you know this but did you know your child can see?”

Mic-key: A plastic, button looking, thing that is inserted in a hole in the child's stomach wall. It is designed to do 4 things. 1) Connect a feeding tube to the child. 2) Give the child something to yank on so, once pulled out, they can spray stomach contents on everyone and everything. 3) Trick the parent or caregiver into thinking the feeding tube is firmly attached thereby assuring maximum spilling of sticky pediatric formula. 4) Allow the child to make cool fart noises through their belly button.

Nickjr/Disney Channel: The only TV stations you get to watch for the next 20 years.

PT, OT, and all the other ___Ts. A form of therapy designed to leave your pocket book empT.

Quad: Short for quadriplegic. This doesn't mean the person is paralyzed in all four limbs. It can also mean the child kicks and punches the #$%^ out of you when you try to get them dressed because they can't control their spasms. Or can mean their muscles in their body are always so contracted that their body twists and turns in every direction causing scoliosis and hip dislocation.

R-word: This is something, that if you say it, some parent is going to bitch slap you. For the uninformed, we don't say retarded anymore because of its association with that most awful of insults, calling someone a “retard”. We now say intellectual disability or cognitively impaired.

Ramp: Something you put in the front of your home to alert your homeowner's association to watch you extra closely for creative ways to fine you. Also used to alert criminals that your home is an easy mark.

Sleep: Something you don't have anymore.

Spastic: One of the positions parents assume when they get their child's latest medical bill or denial in the mail every day.

SSI: A religious cult that believes someone with a higher cost of living due to a disability can live on $700 a month.

Toothbrush: A device designed to make a brain damage child gag and vomit immediately prior to their school bus arriving thereby assuring the child always wears a clean set of clothes to school.

Wheelchair: 1) A device designed to instantly widen doorways and to give your home a custom “lowrider” wainscoted look, that fashionable ring throughout your entire home approximately 12 to 18 inches above the floor. 2) A device designed to double your car payments.

Fulfillment: What you now have in place of fun. Not a bad trade, all things considered, because fun lasts a moment and has to be repeated over and over again whereas the fulfillment you get from loving a severely disabled child lasts for eternity.

Here are a few more that do not directly appy to me, but do to most of the world with a disabled child.

Trach: Similar to the aforementioned Mic-key but it's used to connect a breathing tube/ventilator rather than a feeding tube. It comes with the added benefit of depriving the parent of sleep because you have to suction slime from your child's airway every few minutes 24 hours a day so they don't choke to death.

Vent: This is what the irate parent does when the stupid caregiver doesn't know how to operate the child's ventilator and is too proud to admit it.

DAFOs: Slightly more Deadly version of the aforementioned AFOs.

APE (Free and Appropriate Public Eduction): This is what happens to special needs children at school. They get Faped by the other kids who think it's fun to bully them. Of course, the teachers do nothing to protect your special needs child and sometimes even engage in a little faping themselves because, after all, FAPE is mandated by the government. The best thing about getting Faped, of course, is it's free.

Friends: Something you used to have.

Fundoplication (or Fundo or Nissen): Revenge of the GERDs. A surgical procedure designed to prevent the child from barfing all the time. It comes from the Latin phrase for Funds Depletion.

GERD (GastroEsophageal Reflux Disease): For the rest of us it's called heartburn but, for the disabled child, they give it a bigger, fancier name so they can charge the parents hundreds of dollars a month for what the rest of us pay $10.

Head of Household: Your new income tax filing status after your spouse bailed because he/she “didn't sign on for this”.

IFSP (Individualized Family Service Plan): This is the baby brother to the IEP. It takes a lot of practice to foul up an IEP in exactly the right way so, prior to your child being old enough for school, they get to practice for 5 years while your child is still a preschooler.

NICU (Neonatal Intensive Care Unit): Pronounced Nick-You on account of that's what they do to your pocket book.

NPO (Nothing By Mouth): OK, so it's the Latin equivalent of nothing by mouth but, if they just said nothing by mouth they couldn't charge you as much.

SBS (Shaken Baby Syndrome): An argument in support of capital punishment.

Seizure: This is what they do to your home and personal property when you can't pay your child's million dollar medical bill.

COURAGE

FRUSTRATION IS UPON US!

Frustration, it hits only every now and then with Joey. Our new normal is well established now. Life is moving at a good pace right now, however my kids are growing up to fast.

This time of the year is probably the hardest for me when it comes to Joey. This is when all his dr. appts. are, when all the paperwork for all the services he has is due.

• The appt. I dread the most is his Orthopedic. Is there the beginning signs of scoliosis? Are his hips subluxed at all? How bad has his tendons in his calfs gotten? Are his abductors pulling in to much? Do we need to botox and serial cast AGAIN? This appt. is so stressful. Even though Joey is very healthy and happy I will for the rest of his life struggle with dealing with the orthopedic side of his injury.

• Then we have the Neurologist appt. Does he need medication? This is the question that is always asked. Usually though it is not that stressful.

• And what about the Opthamalogist. Can Joey see any better? What can we do to help his eyesight.

So my first thought is "Am I doing enough for Joey". Do I add more therapy? How much more can he or I take before it pushes us over the limit? So the answer to my questions are, yes we can do more, but just a little more. I am going to enroll him in speech therapy outside of school. Over summer and the first half of fall I took JOey to a clinic at CSUN to help him with an AAC device. Lets just say that they are not ready for a child like Joey yet, it didn't work good. He can't use his arms well enough to use a switch to communicate and his eyesight is not good enough for him to see what to touch or to even use an eye gaze device. So that leaves us with speech. We need to get Joey to TALK. That is going to be his best form of communication. So start TALKING Joey.

Then in January or February I will take Joey back to AZ for more therapy there. This usually helps him cognitively and hopefully wll help his tone in his body to keep him for having to have more botox. I need to keep up on this therapy and try and do it every 3 months or sooner.

Well that's it for therapy.

Joey loves school. He takes the school bus every day. I think this is his favorite part of school. He is a very happy boy and is growing up fast.

HAPPY THANKSGIVING!

2011 Near Drowning Mom's Retreat

Just this last weekend I went to Suncadia in Cle Elum, Washington for our 2nd ND Mom's retreat. This year there were 15 amazing mom's and 2 helpers. It was the best most normal weekend ever. Just check out my pictures.

BEAUTIFUL Ladies! BEAUTIFUL Leaves!

just having fun with Lisa

Yep, I'm creeping behind Joanna and Erin.

Fun times with Amy, Lisa and Lindsey

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Martha Washington and her daughter Amy. LOL!

Amy, your a natural on creeping.

3 Little Piggies (Lindsey, Kehau and me)

THE MOST AMAZING WOMEN!

The beginning of our fun.

Let the good times begin.

Lunch at the Winery!

Of course I have a million other pictures, you can find many on my facebook.

Thanks Ladies for a most amazing normal, comfortable weekend.

Thank you Sue for organizing it and thank you Tiffany for letting us use your place and Thank you Amy and Yoli for all you did for us this weekend.

I LOVE YOU ALL!