Tuesday, November 27, 2012

Dear $450,000,000 Powerball WINNER!

Written by:  Tammy Wheaton, Guest Blogger

I am writing today with a heavy heart.

Our autism journey has been full of ups and downs. 

Yesterday was a huge disappointment, and I allowed it to get me down, but only for a moment; cause as you autism parents know, you make no progress down in the dumps, you got to get right back on the horse!

Warning: I never post the rough times on social media, so all of my Facebook family and friends only hear about the fun times with Beau with an occasional hint that we might be having a rough time.

Well on this blog I am going to tell the truth....the good, the bad, the ugly....the uncensored version of our lives with Beau.  

So if you only want to know the positive stuff, send me a friend request on Facebook: Tammy Weaver Wheaton....and only read the last three sentences of this blog.

So my first blog finds me on the day after what we will call a "minor setback".

Maybe someday I will blog about how we got to this point, but here is where we are:

Beau is hurting himself. He is non-verbal.

He can't tell me he loves me, what he wants for Christmas, when he has to go to the bathroom, when his tummy hurts......why he beats himself silly in the McDonald's drive through, why he grabs my face when I get him dressed, why he punches his hips and legs until the bruises are the size of grapefruits and I fear the school will think I hurt him, why he punches himself and has to wear a helmet any time there is mention of food, on the bus, in the morning, at school, in the evening, and sometimes during sleep.

The TC has told us they cannot help and to seek alternative treatment options.

The BCBA referred us to Kennedy Krieger Institute in Baltimore, Maryland because there is no way to address the frequency, duration, and severity of what we are dealing with without intensive, inpatient treatment options that Kennedy Krieger can provide.

So it has been months of bruises, and now what seems to be a permanent lump on his head, sending data, videos, enduring hours of meltdowns, attacks, screaming, figuring out how to get him cross country, ordering safety harness, helmet fitting, and oh yes, punching himself to what I fear death only for the insurance company to say it is not an emergency and is therefore...not covered.

I allowed this to defeat me but only for a moment!
Be glad to know and rest assured I am back on the horse, we are appealing the decision as far as we can go, and we have a plan B!

If any of you are wealthy and want to save the life of a child with autism, you know where to find me!

Thursday, November 22, 2012

Welcome Natalia Phillips... our first Guest Blogger!

We are very excited to announce that we will be hosting blogs written by others who are living the life of parenting a child or children on the autism spectrum.  Please check out our new page that spotlights our guest bloggers and we will be adding more very soon.  Our friends will be blogging once a month and contributing their knowledge and their experience on the good, the bad and the ugly.  Our first guest post was written by Natalia Phillips.  Enjoy and Welcome Natalia!  

All Aboard My Crazy Train!  
Written By:  Natalia Phillips

          To quote the great Ozzy Osbourne, “Crazy, I just cannot bear.  I’m living with something that just isn’t fair…I’m going off the rails on a crazy train.”  Some days I feel this way.  I have five children.  Three of them are on the autism spectrum.  Our household can get very crazy and there are days that I feel like it is incredibly unfair – unfair for the three who have so much to overcome, unfair to my other two children because so much revolves around the three with special needs, and unfair for me and my husband because we have to work extra hard to not let all the stress and chaos trickle down into our relationship.  All of these things aside, I love my life.  I have an amazing family and have been blessed with five beautiful, unique children.
          I’m grateful for the opportunity to guest blog for Autism Pirate, mostly because I lack the time and motivation to create my own blog site.  I have so much to share, whether it is telling all of you about the good times, venting about the bad ones, or seeking advice from other parents out there.  For now, I’d simply like to introduce myself and briefly tell you about my five kids.
          My name is Natalia.  My husband, Scott, and I have been married for 8 years.  Over the course of these past 8 years, I have been a foster mother, a biological mother, an adoptive mother, and most recently, a surrogate mother. 
In 2004, when we were 23 years old, Scott and I became foster parents.  That summer Sarah came to live with us.  She was 4 years old.  Sarah was diagnosed with Pervasive Developmental Disorder, as well as speech and language delays and intellectual and cognitive delays.  We obtained legal guardianship of Sarah in 2006 so she could leave the foster care system and live with us permanently.  Sarah just turned 13 and the teenage years are bringing a whole new set of challenges. 
On December 15th, 2004, our twins came to live with us.  Tyrel and Tyrese were 3 ½ years old.  Tyrel had some mild speech delays and some major behavioral problems and anger management issues.  Tyrese had a diagnosis of Pervasive Developmental Disorder, accompanied by speech delays, delays with processing information, sensory issues, and fine motor delays.  We adopted the twins in 2010 and today they are 11 years old.
We also have two biological children – Paul, age 6, and Cash, age 4.  From birth to 12 months, Paul was a happy, loving, and smart baby who hit all of his milestones early.  Almost immediately after he turned 1, we noticed that he wasn’t learning any new skills and shortly thereafter he began losing the skills – speech, fine motor, and social – that he did have.  At the age of 2, Paul was diagnosed with Autism Spectrum Disorder.  We were blessed to already have so many resources in the home for the older three children so Paul was able to get a lot of help right away.  He has made remarkable progress and although his social skills are still lacking, he is super smart and has an amazing memory (and this isn’t just mom-bragging…Tara can attest to this!).  And then there is Cash – my wild child.  He is outgoing, smart, and so funny!  I know he’ll grow up to be such a loving and accepting person when I watch him interact with his siblings because he doesn’t notice the differences that they have. 
So that’s my life in a nutshell.  Never a dull moment!  I look forward to sharing more with everyone.  

Wednesday, November 14, 2012

Happy Birthday Wyatt!

Dear Wyatt,

I am writing this while you are fast asleep.  I hope you are dreaming of the presents and party to come over the next few days. I am also writing to tell you that I hope you read this when you are older, at a moment when you feel resentful or cheated or just fed up with the whole thing that is your life as the only sibling of a child who has autism.

I want you to know that up to this point at least, I have tried my best. I promise to keep trying my best and to give the job of being your mom my full attention. I admittedly don't always do that but I pledge to do better. I never want you to feel cheated or fed up but I know you do.  I also want you to know that you are right. You are cheated, you should be fed up, just know that mom and dad understand and we love you more than you will ever know.

You probably won't remember this but a few months ago we were talking after you handed out blue light bulbs to the neighbors for autism awareness.  I said "Wyatt you do know that we are so happy that you don't have autism don't you?"  You said "no" and my heart skipped several beats. You were six but aware enough to know that maybe sometimes mom and dad unknowingly highlight our situation because on some level it makes us feel better. I'm so sorry you ever felt that way.  Please know that since that day I have tried to be cautious in involving you in autism related events that you don't want to be a part of or because of your age or that you don't understand.

The amazing thing is that since that time, when asked, you always want to be there, you are always willing to help and you don't complain.  I know this may change and if it does always know that we understand and appreciate you, love you and support you know matter what.

I love you Wyatt.

Tonight you turn seven. At the stroke of midnight exactly you turn seven. Born at midnight on a full moon in the middle of a Colorado blizzard.  I think that was a collection of craziness that was the beginning and preparation for the chaos that is your life.

You are one cool kid and for your seventh birthday I want to tell you seven things I love about you.

1.  I love that you never stop talking even when you are asleep.  I guess I have that coming!

2.  I love that you always want to be the life of the party and find a way to involve yourself in the most interesting thing going on in the room.

3.  I love that you are one of the most helpful people that I know. You are always willing to lend a hand no matter what.

4.  I love that you don't have the attention problems that make me a disaster.  I love that we can be pulling out of the driveway and when I sigh you say "Mom what did you forget? your phone or your lunch?"  I appreciate your gift of remembering on many levels.

5.  You are an amazing brother.  You love Rye and cried when I threatened to finally put you in separate rooms.  You melt my heart when you engage him in something by being clever or when you explain something to him in a way that he understands because you know how he thinks better than anybody.

6.  I love that you are competitive in every bone of your body. I love that you want to win and give everything your all in order to do so. Some people won't like this about you but I think it is one of your greatest strengths.  There is nothing wrong with the desire to win as long as you learn to lose graciously.

7.  I love that you love your family so much and that you constantly remind us how important it is to spend time together. I can't tell you how much it warms my heart when I ask you what you want to do and you say whatever it is and follow it up with, "together the whole family."

Wyatt I love you for all the things you bring to our family and I'm so excited to be a part of your journey.  Happy Birthday!  We love you!