Monday, June 17, 2013

Our Life Has Changed

The Day Our Lives Changed

 A few years ago my father in law passed away willing his beloved worn car to my hubby.
At the time it was a great second car to have in case of emergencies.  My hubby rides his motorcycle more often than using that second car.  I, for years have leased a car for safety and convenience. Having  our son I wanted to keep a car that had free maintenance.   Just as a quip one day I said lets get rid of the lease and just drive the second car and see how much money we can save.
At the time my hubby thought it was in too poor of condition to take that offer seriously.
As two years have gone by and the lease is coming up on my car I again said, "okay, we have fixed up the second car now lets challenge ourselves to see if we can make it work as our main car"
It is paid off, insurance is close to nothing figuring out our numbers we would save over 10,000 dollars a year by not leasing another car.

Lets do it we said.  Challenge excepted.  We will go less  and do less,  no more driving on a whim to California and vacationing.  It will really save us so much more than the $10,000 we first figured.

As we are taking on this challenge is was a blessing in disguise.  A year ago our lives changed.
Some of you may remember my son being kicked out of preschools and private classes because of not acting like the other children his age. 
We thought he was a high spirited boy who just wasn't ready to sit in a classroom for hours a day.
I continued on with taking him to the library everyday to play and read to him.  He was 3 at the time and his speech kinda disappeared one day.  He began losing words and babbling.  A day at the library would prove to be so much more than reading books.  A kind young mom who was concerned that my son was not yet speaking gave me a number to an organization that would evaluate him and find why his speech was so jumbled.  I was so grateful that a stranger would share this information with me that it put me on cloud 9.  I called immediately and made an appointment.
It would take 6 weeks to get that appointment.  We continued on with our lives and I was making orders for my paper garlands by the dozens.  Using old books, I would buy stacks of books just for my art.  Never paying attention to titles or stories.   A day just like any other, we were out at Home Depot and a lady called me from behind saying, " oh your son is a toe walker"  I never knew that was a thing.  I smiled and said yes, we think he gets it from my hubby, he too walks on his toes til this very day.  Later that evening I was back to making my paper garlands and tearing book pages.  Watching my son play in my studio and I glanced down at a few words on the book pages…it said "DOES HE WALK ON HIS TOES?"  I was intrigued, I thought what is this?  I continued to read…"does he speak in questions" Like if you say,  Do you wanna go to the park does he answer, PARK?  I got very nervous.  I realized the book was Jenny McCarthy's book on Autism.
I continued and before I knew it I had read the full book and my heart was in my stomach…she was describing my SON.  I almost threw up.
I scoured the Internet for information, testing, more questions anything I could find.  The more I uncovered the more answers I got and things my son was doing became so clear.
That appointment for his speech couldn't come fast enough.  Time moved so slow for those weeks leading up to the testing.  We headed out for a summer snack within those weeks and my son had to be rushed to the ER with hives and lips swelling.  Never before had anything like this happened.  What was it that had caused an allergic reaction?   Finally the day came for the testing, and we were CHANGED forever.  My beautiful dear boy was labeled AUTISTIC.   It hit me hard.  I became withdrawn,  severe panic attacks set in, for months I was so unsure of life and my surroundings.  It was as if the rug had been pulled from underneath me and everything that once mattered, mattered no more.   I was scared to be alone, I was scared for life.  I was addicted to reading information on Autism and how to change it, how to make it better.
Was there hope?  We immediately changed his diet.  Within 24 hours from a diet change we noticed a huge difference in his tantrums, his stomach size and his clear mind.  My son was placed in an early education program through the public school system and it was HARD… it was hard letting my baby, 3 years old, get on a bus everyday and 6 hours a day he was taken behind doors we were not allowed in or given knowledge of what was going on.
He came home in a daze, tired and cranky.  He was getting worse in tantrums and mood swings.  Just when we thought we had them under control.
The school system assured us this was normal, but necessary to make progress. 

We started letting close friends and family know about our discovery and it was eye opening of what people really think.  Some told us, "oh, we thought you were just bad parents and couldn't control him" some said, "wow we just thought he needed a good spanking" others just denied that autism is real and we were making excuses.  Even our own pediatrician wouldn't address our concerns of our son seeming to be going backwards in life.  That summer he started losing eye contact and was just sad a lot.  Almost like a depression

Through this whole ordeal, I had no idea that my body was not functioning properly.  As Christmas drew closer I became more sick.  The fatigue from dealing with a child having autistic tantrums and not speaking,  was more than I could handle. 
I kept going, putting on a happy, fake face and not letting anyone know what was hurting and the pain I was in.  Over Christmas it was like a miracle happened.  My boy talked, and talked a lot.  It was like a switch had been turned on.  I was crying and thrilled that something was happening. 
Then New Years hit and I ended up in the hospital.  The pain had gotten so severe I couldn't hide it anymore.  Finally a diagnosis of the gallbladder and emergency surgery was scheduled. 

I was terrified, this would be my 3rd surgery in only 4 years time.  My thoughts were with my husband and what would my family become if this was serious.  Falling into the hands of the best surgeon here.  She listened as she held my hand and I cried for my son and his disability and how I couldn't not be here for him.  She assured me all would be okay that she would make sure of it.

The surgery passed, months went by and my son was becoming more and more of a typical little boy.
We still were not set on the school system that he was in.  He started blossoming,  talking and saying things that would shock us.  Memories from years ago were coming out of his mouth.  He would never forget a name, face or directions to a place.  He knew the way to grammy's in California like the back of his hand.  It was frightening how he remembered or would tell us we were going the wrong way.   We then realized he had a gift.  He was in tune with all going on around him but yet still after a day of school unable to tell us what he did all day.  It was as if he was blocking it out.  The school year came to a close and we saw a dramatic difference from when our boy started but he was also now acting like a newborn baby and grunting and fake crying at odd times.  We saw this in the very low functioning children in his classroom and questioned the teachers, principle and therapists.  All of them stating and insisting he is not getting this from the other children.  We desperately wanted to know how he would act in a typical classroom setting.  He played with our friends children and never showed any issues.  He loved to interact and play with children. 
So we sought out schools that would take him and challenge him.  We were all set to go when we were set up.  One small sentence in our child's paperwork from his school said "HARMFUL TO OTHER CHILDREN"  that one sentence stood in our way of getting him into a private school, our dreams were crushed, again. Nothing could be further from the truth...he loved kids and desperately wanted friends.  We just couldn't understand why this was said. 
We thought,  we tried but I guess he is destined to go to summer school with all the children he went to school with all year.  
Until fate stepped in,  finally a doctor who was willing to take on a child with autism and refer us to an advocate and psychologist.  They pulled him immediately from public school and discovered our child is considered HIGH FUNCTIONING with a rare condition of being engaged, eye contact and loves touch, feel and other children to play with.  Craves attention and pretend  play, as if he is on stage the world is his audience.
With their help we have been placed in a school that he will thrive in.  Learn from typical children how to act in a classroom setting.   In just a few weeks he has become so happy and excited to go to school.  Loves his new teacher and best of all we as parents can go in and watch him.  We get to see how he is being treated.  Which makes us feel good and safe.
We are not taking this lying down.  We will fight for our son and others who have been placed under a label.  These kids hold so much potential and for them to be secluded and set aside in life is unacceptable. 
I will continue on this journey the rest of my life, fighting for what is right.  I know how hard it is to find doctors, therapists, and schools that help these kids.  As a mom I want to help others.  I know how this diagnosis can affect you.  It hits hard and it is not easy nor is it cheap.  There is help, trust me.  You just have to fight as hard as you can.  And learn to ask for help.  You will never get through this without help.
My story is long but the challenge is to save money on the non-important things, to give to others who can't afford help and to help pay for our sons treatments and schooling. 
We are cutting back so much,  from my "new hair" which is my natural color to save $1000's of dollars a year in bleach, lol, to learning to cook at home, watching movies we own, and crafting from supplies I already own.  Life is a challenge and we are facing it head on.

I hope my story reaches someone, to know you are not alone and you will get through it. 
I plan on another post to list names and numbers of places that have helped us here in Las Vegas.
For some reason a lot of these places are hidden unless you know the right name to say.
It is like a secret society.  I am sorry but I think that stinks.  There is no reason you should have to claw and tear information out of doctors and schools.  There should be an instant list given to parents for outreach.  I am breaking all the rules and helping others.
I have always been a bit of a rebellious person so it only fits that I continue on.  Don't tell me what I can't do, cause I will show ya what I CAN DO!


Sue said...

Hi Amy. . .
Writing this post had to make you find comfort in being able to not only share something so important, but to free yourself of everything you've held inside for so long. I'm positive that the story you have written & shared will help others. Please take care, and I'm happy that so many mysteries and questions have all been resolved for you!!

Take care my friend,

Ricki Jill Treleaven said...

You are such a wonderful advocate for your son. What concerns me most is how you claim that so many of these places and services are "hidden." This withholding of information to parents within communities and school systems has to stop. It is a form of discrimination because how can we, as parents, make the best decisions for our children without all the information needed in order to make an informed decision? A huge red flag is when a school or school district wants to keep a parent out of the classroom. That's totally unacceptable.

Take care, Sweetie. So happy that your son is in a loving environment with neuro-typical children. It sounds like a big part of his regression was due to the anxiety from his former school. I hope he never attends that school again!

Very well-written post.

Ricki Jill

Gail Thayer said...

I'll second what Jill said so well! You should ALWAYS be able to view your own child within their school setting, especially in the case of special needs.
Parents have rights. I'm so glad he's out of that school, it sounds like it may have been very anxiety-producing for poor little Brooklyn.
Children tend to imitate others a lot at his age and he needs typical healthy role models to emulate which will help him monitor his own behavior.

You're such a great Mom and Brooklyn's so lucky to have you to guide him (and your dh of course!)
Take care.....I'm so glad you got some better and inspiring news about your son.
Many children aren't 'typical' and that can be difficult for them but doesn't make them any less capable or lovable.

Susan EvelynAndRose said...

Oh wow, Amy, you & your family have been through so much these past few years. What a difficult time for you, both with your illness and trying to find out more about why your son was having struggles.
Your dedication, love and commitment to your baby is beautiful to witness. It's a shame you have to face such obstacles with the 'system' and have to dig so much to get help and answers. That is just not right. You are your son's best advocate - you know him best and all that he has to offer. Embrace his gifts and shout them out to the world.
I'd love to chat more about this with you via email. Just respond to my comment and I'll share a little bit about our story.
Thanks so much for your candid story.

Julie said...

A beautiful heartfelt post Amy written from the heart ... by one of the most wonderful Mums I know!!! I got a great big lump in my throat reading your words.
Keep shouting out loud for your son my friend - it is worth it in the end believe me. Sending great big hugs all the way across the miles to ya. x0x0x0

Rhonda said...

You know I'm not a mom but I have always felt each child born is so special. I am not sure how they can label any child, as each there is no way they are identical.

You will inspire other moms, who, like you, do not know where to get help. I am in constant awe of your love to others.

When I look at Brooklyn's photos I see a bright star! Just sayin'

Lynn Richards said...

Sing it, girl, SING. IT. For all those out there who are in the shoes you used to wear. For all those out there who are in the same shoes as you now. TOGETHER, we are powerful in advocating for our children. :))))

Faded Charm said...

You go girl!! Don't ever give up fighting for what YOU know is right for your child....that's what makes us good Mamas:-)

I think I told you we had to fight for what we believed was right for our children with the school district in which we lived. Why would THEY possibly know what is best for OUR children, anyway?? It was a long, hard battle, but we won in the end and all three of them are thriving!

You keep fighting for that little guy because he is special and enjoy your Summer with him:-)


Petite Michelle Louise said...

I know this Post has been years in the makings. I hope you finally "exhaled" the second you hit "publish." Sharing your story now, and in the future, will surely help MANY parents and children who are and will be faced with the same challenges following the diagnosis of Autism. You and Rudy are wonderfully-loving parents. Brooklyn will thrive because of it! In his eyes...I see happiness and a real "connection" to you. I will keep you all in my thoughts and prayers as you face this new journey.

Diana Mieczan said...

Bravo, sweetie!!!! I cried reading your post because you inspired me and you two are a wonderful parents!!! I can't believe that they would write something like that on his papers. It's shocking and totally sad! I'm so happy that you managed to get all the help needed and that he is blossoming:) Btw: your reference to secret society it's very spot on...It's like that everywhere. Stay strong and have a beautiful day. xoxox

Tina @ TinyBear Studio said...

Amy - you are such a wonderful mom and your son is so beautiful. I´m so happy you found someone who knew and could help. Your son is going to have a wonderful and blessed life - how can he not, with such wonderful parents. kepp strong and keep fighting - you rock

Kimberly Rogers said...

Oh mu goodness, Amy. What your family has been through! I'm so glad that you're getting the hard won support you need now. It should not be so difficult.
My heart goes out to you and wishing you the best.
Hugs, KIm

13 said...

For me it's so reassuring to read your blog. In my own I've talked a lot about my daughter and her autism. It took me three years of fighting to get her diagnosed, apparently it's rarer in girls and is often overlooked. She's 11 years old and finally in a mainstream school with teachers who understand and support her and some amazing kids who accept her as she is. So I echo your sentiments keep fighting.