It keeps spinning, and spinning and spinning

No, this is not about Nick and his spinning obsession, but maybe if I try spinning everything that possibly could I may feel better!

My head is spinning.  I am at a delirious, hysterical point right now.  Everything is funny to me.  I have talked to every home health agency, attendant, doctors, hospitals and state agencies this week alone I am grateful for my unlimited minutes on my phone.  Our case worker even asked me if I was ok today when I started laughing about Ethan's brain surgery and the extension of stay in rehab. 

I am so grateful for the Lord giving me the gift of what I know.......and for being stubborn and loud mouthed :) 

I had an interesting phone conversation with the state agency working with Ethan and Nick yesterday for their 6 month review.  I will try to make this short as it went round and round....

them: It's time for Nick and Ethan's 6 month review
me: great when do we need to have this done
them: it is due this week
me: oh, wow, last minute huh?  How about Wednesday.
them: ok Nick and Ethan need to be at the house because we have to "lay eyes on them".  (this always makes me laugh, do they think we gave them away or they were cured over night)
me:  minor problem, Nick is at school and Ethan is in the hospital
them: can we have them both at home
me: I can get Nick there for lunch and then take him back
them: what about Ethan
me: he is in the hospital until mid May.  Remember we have talked about 5 times about this
them: oh, well how are we going to do our visit?
me: not sure, you tell me...
them: can I call you back tomorrow
me:  sure :)

Kiki, 4 going on 20, asked the inevitable question yesterday.  "Daddy, why did God give Nick and Ethan disabilities?" 
I honestly don't remember what exactly I said, but it went over well because she of course was excited to be able to "teach" them things :)

I am so excited for this Easter.  Jackie and Ethan get to come home for 6 hours so we can be together.  Not in time for church but later in the day to spend time with the family for lunch.  Yes, our lives are chaotic but so filled with love, joy and faith.  God is good. 

Jackie, my wife, my love, my friend......what a strong woman!!!!!!  I could not be living at the hospital for 4-5 weeks and do what she does.  She sleeps there dealing with Ethan, gets up, showers, goes straight to work, leaves and goes straight back to the hospital hoping that someone will keep her company and get her some food for the day.  This is day after day after day............I know I could not do it.  I would have jumped out the window already (and that wouldn't do much since we are on the first floor).

Nick's attendant, Charlie, is a saving grace as well.  He is running our house on the evenings I have to work.  We have therapists Monday thru Thursday coming in and out, he takes care of Nick and makes sure Kiki gets what she needs and she has people there to play with until I get home.  Could not do it without him. 

Ethan is a lucky little boy, and if he was a few years older he would realize this.  He now has 4 different young ladies as his attendants and they are ready to rock as soon as he gets him. 

We have friends and family constantly praying and bringing food and good thoughts.......the saying is true:  It takes a village! 

I am so excited for HEROES camp this summer.  WE have anywhere from 72-81 campers a week.  We have so much planned to best serve all our students.  Never in a million years would I have thought something that started so small and as a trial, would be something that grows this big in 6 years.  We are blessed to serve around 200 families that have children with disabilities every summer.  The best part is, while out in the community working with our students, is educating society about the disability community.

I wish people had more faith in people with disabilities.  If we get harassed one more time about why we do not have Nick on the wait list for a sheltered workshop I am going to blow.  In my opinion, I have never seen or toured one of these that I would put my pet at much less my child.  Granted, some people have to because there is nowhere else, but I am not a fan!  Sorry, Nick can do more than get $.25 a Mary Kay box he puts together while not being supervised. 

Sometimes, I think life would be so much better if I was only surrounded and worked with people with cognitive disabilities.  It is the "typical" people that drive me crazy...........


This weekend, I was able to run in the Warrior Dash.  It was a blast and I loved it.  The only thing O would have changed is I wish Jackie was there and I could convince her to run it with me.  It has been so long since I was able to do something like this, I really "forgot" what is was like to have fun.  Crawling in mud, running, jumping over fire.....not once did I think about which doctor or agency that I needed to call or what I needed to plan or schedule.  I can not wait for eh Hell Run in November.......

I eventually want to get Nick to do something like this with me.  Yes, I know, it sounds crazy.  But, I am not in it to win, but what an accomplishment for him....something else that people never would think he could do.  I always go back to TEAM HOYT.  Whenever I get frustrated and beat down, this video clip makes me tear up and gets me back in focus.  ANYTHING is possible.....  :)

Autism UN-Awareness, disability snobs and Reality Check

Well, here goes nothing.  I am at a point in my life where if I do not do something just to get it out of my head, I am going to punch someone and pretty damn hard!  So, I am going to give random thoughts tonight about things/thoughts tha thave been building and I need to talk about......

Note:  I do not need sympathy or empathy....I am HAPPY....tired, exhausted, stressed, and anxious, but Happy and Blessed!

So, the whole autism thing.  I am a passionate man about my son with autism and about working with literally hundreds of people with autism.  It seems to me this year that Autism Awareness is the new fad and the new trand to be "aware" about.  However, are people really aware?  Not so sure.......

See...now here is where my ADHD brain kicks in and I switch topics becasue I jsut thought of it :)

Now a piece that really gets under my skin....... DISABILITY SNOBS!  These are the parents that usually have children that typically are higher functioning and can look as a neuro typical kiddo from afar before a conversastion begins!!!  Well, today I have read and ran into a few people that really need to do a reality check....

Today I heard a person say, " no I never knew any of them (referring to people with autism) but I gre up with "retarded" kids in school............Dear Lord!  Really?  Really?

I also read about someone whining about how her kid is in the lowest reading group and is he going to be able to be in something like AP classes or whatever.  Well, helloooooo, reality check!!!  What I would not give to have my son shower by himself, not have an accident in a store becasue he could not physically unbutton his pants, or fall down and have a seizure while losing bladder and bowel control.  To even to be able to utter ONE word!!!!!

Now, if you're reading this you know Nick.  He is by far one of the most interesting and fantastic people I know.  This young man has taught me more than any other human being or text book could ever do or teach. 

Yes we have been looked at by those disability snobs and ovehear is my child going to be in "his" group.   Sorry, we don't worry about if we wll ever get into Pre-Cal over here...we worry about what are our next steps to faciltiate Nick in becoming the contributing member of society that he WILL be. 

TOPIC CHANGE:

My Bubba ...Ethan.  All this still is a little unreal!  Really, a week from today I will be sitting in ICU.  It did not hit me how serious this is and thought oh this is not happening he will be fine.  Until I made the caring bridge website.  Hey, these websites are for the severe sick and surgeries....oh, wait, this is serious.  Yes, I am a planner, and do not like surprises.  SO, for about a week now I watch these brain surgeries on web sites and prep for how he will look after.....I ask myself over and over!?!?  Will the halo be off, how swollen will he be......can I really sit for 6 hours and WAIT .  For those who know me, it is EXTREMELY difficult for me to sit stil lfor 6 seconds:"  Will this get him off the pump, will he stop choking, will he eat and drink?  Hundreds and hundreds of questions and I know I do not have the answers...........

SWTICH AGAIN......to my Princess Kiki

Jackie and I want to pull our hair out, scream, and lvoe and kiss her all at the same time.  How much slack do we cut?  What is it like for a 4 year old trying to learn how to "be"  when at home your 2 siblings have significant disabilites.  I sit and cry wanting the best vor her and tyr to figure out how to manage some time, any time even a second that we can focus soley on her and not worry about what doctor, attendant, home health agency and/or medication is present leacking or nonexistent.....  Will she ever know, that despite meeting the needs of Nick and Ethan continuosuly that she is jsut as loved, special and important  to us.  I feel like a failed father.  She dies to have people over and we can't....with therapists and sicknesses and everything else and no time......

Change.........

How do you fit it all in?  How do you be a better father and husband.  I work about 80 hours a week.  This would be fine except my wife works full time as well.  Our first thoughts are what bills ae coming in, and what do we have to pay off........  it's sad becasue  I knoe what I should be doing. I should be playing at the park with Kiki, eating a family dinner riding the DART with Nick to his favorite restaurant......


MEET OUR EXTENDED FAMILY:

Besides our immediate family, these ar ethe people we talk to on a regular basis:
Epic Med Staff, Precious Care, Medo Medical Supply, R-Tech Medical Supply, Berry Family Services, Dallas MetroCare, MDCP, CCP, Dr. Swift, Dr. Sparagana. Dr. Lin, Dr. Carol, Dr. Renard, Dr. Gottlieb.....


Oh I pray....I pray all the time.  I need patience,  I need wisdom, I need strength,,,,,,


One thing I do know.  I have been given a gift.  A gift I never thought I would have wanted or been able to do,  Besides faith, family and friends....working with individuals with disabilities......  The Lord has blessed me with this,,,,the patience, the wisdom and the strength.......

Myr profession makes me a better FATHER and my family makes me a better EDUCATOR! 

A reason fo everything....wow I hate this saying.....but God, it is so true.....

What's killing me is my lack of control of the situation the small and the big.......

So, as I sit here while one son is upstairs stimming and one lays here hooked up to a feeding pump I think.........I know.....I am BLESSED.  Just breathe......

I may not be PC in my post, I am very random and since I can not burden my wife with my stresses and she is asleep anyway, you get to read them...


So , no I'm sorrys or no hang in there.....This is my sounding board....and thanks for coming along for the ride!