Passion and Love Can Bring Out The Voice

We all have particular dreams and aspirations for our children when they are born. When a child is diagnosed with autism, those hopes and dreams undergo major changes. Over this past year, I have had to come to terms with what to expect for my daughter, but there are some things that remain constant. My daughter wants to communicate, she wants to belong, she wants friendships. As her mother, it's my job to help her, but it is difficult to watch her struggle.
While many people know that autism exists, they can't identify it in another person. My daughter looks like any other girl her age—and she is so beautiful. People are taken aback by her lack of communication. Strangers that meet her are always asking her questions and are always talking to her. When Natalie does not respond to them, they think that she is being rude or she is trying to purposely ignore them. I can see these small things become giant obstacles for her as she gets older and tries to make friends.
While some people are understanding and accepting, many people are not. Many people believe that children and adults with autism don't have feelings, but this couldn't be further from the truth. My daughter definitely has feelings and they get hurt easily. She just doesn't express her emotions in the same way that you or I might. The sad truth is that society views autism as a disability. It is true that  people with autism have challenges, but  isn't this true of everyone, whether they have a disability or not? My daughter is still the same beautiful, amazing, loving child she was before the diagnosis.

I have spent hours surfing the internet, seeking new treatments. There are many new and unproven programs that promise miraculous results.  

There are many approaches out there, and my purpose here is not to debate which is “right” or “wrong”. It's just that it takes a long time for an approach to accumulate enough research to be proven as “evidence-based”, and I can’t afford to wait.

As an autism mommy, I tend to follow my intuition. I may not be an expert on autism, yet, but I am an expert on my child. What works for one  may not work for another.
So recently I have followed my intuition and knowing that Natalie has a special love for horses, After some research I found Equus for Humanity, a horse ranch  that provides equine assisted therapeutic activities. I cannot tell you how much Natalie has loved doing these therapies. They combine speech, physical and occupational therapy and use the horse to get the results they want from my daughter. Her daddy and I were in disbelief last week when Natalie gave "Chocolate Chip"  a command, a two-word sentence that I had never, ever heard her say before. She wanted Chocolate Chip to walk, but the horse won't walk unless given the proper command. At first, I saw Natalie struggle to form the words with her mouth, I was so impressed because I could read her lips clearly, and then, she did it! she said out loud, "Walk On" and the horse started to trot along.

Natalie & Chocolate Chip

  The doctor that works with Natalie turned to us with a big smile and a thumbs up and the tears  welled up in my eyes.  Natalie totally gets it, she knows that in order to have the horse do what she wants, she must give the verbal commands. I could not be more pleased and I am so happy to use her passion for horses in order to bring out her voice.
If you are interested in reading more about therapy with horses, you can access the website for Equus for Humanity here or follow their Facebook page here

Natalie's Dream Team - Overwhelmed with Gratitude

We did it! 

Natalie's Dream Team

Natalie's Dream Team participated in the
 'Walk Now For Autism Speaks' event on October 26.  It was a day full of fun and entertainment with an atmosphere of excitement.

I must admit that this was one of the best days of my life. Words seem impossible in times like these and I am overwhelmed with gratitude. 

Nothing Brings People Together Like Love and this event was a testament to that. 

I was both humbled and inspired by the great turn out!

Thank you to all of those that were there to support Natalie and our Family and to those that were not able to be there, I know you were there in spirit. 

Together, we are changing lives and helping children and individuals with autism, plus their families, thrive!

Marching along

Natalie's Dream Team started with a goal to raise $500 and a goal of 6 team walkers. But by October 26th we had raised $1,050 and had 39 walkers!

Natalie with big brother, mom and dad

It was an amazing time with family, friends and host families. A beautiful walk through the Nova Southeastern University campus in Davie, Florida, 

where Our Brown-Eyed Girl, 

Natalie was the Star!  

Natalie with cousins and grandma

Early on I had decided that I wanted to record this incredible event by having a photographer capture all the moments before, during, and after the walk. I reached out to one of my local mommy support groups for references on good photographers for this type of venue. I was blessed to receive a a response from one very special mommy in this group who is also a photographer. She reached out to me and said that she too had been touched by Autism and wanted to donate her professional services to Natalie's Dream Team. Her name is Dani of Portraits by Dani and she was an incredible photographer and a lovely person. She took many photos and never complained about my numerous requests. She was such a trooper, taking the time to photograph individual families and walking along with us while snapping away with the camera. I can't wait to have those beautiful pictures and share them with all of you. But in the meantime, I have included pictures taken by family and friends.

Uncle was so proud to be carrying Natalie's banner

My family and I sincerely thank you for your love and support. 

We couldn't be more blessed having friends and family like you in our lives.

My Smart Cookie

Hello everyone, I have been a little absent from blogging lately. I apologize for that. It has been crazy at home and work. But I did blog a couple of weeks ago about Natalie being our every day miracle and I am so happy to report that Natalie continues to amaze us every day.  I wanted to share one of these amazing things that occurred last week.
Natalie loves Nestle Crunch Bars. So last week I purchased one for her. When I opened it I stared at the letters imprinted on the bar. I decided to use this as a learning tool and cut up the bar by dividing the letters. 

I thought that I would give each letter to Natalie one-by-one and teach her what the different letters were.
I thought that I would be teaching Natalie something new and fun. But, once more, my daughter would be the one to amaze me.  I handed Natalie the first letter, and noticed that she was examining it and not eating it. She looked up at me and we smiled to each other. But before I could say the letter she exclaimed, "C!"  I was stopped in my tracks. I think time actually paused for a moment. You have to understand how off guard this caught me. She RECOGNIZED the letter and she SAID the letter! After eating it, I gave her the next letter and, again, she yelled, "R!" next "U!" Next the N. But this one she did not say. So I said it for her, "N." But when I gave her the next C she said "C" and then the final letter....Yes! she said "H!" I was so excited! She actually recognized and said all these letters:  C-R-U-C-H
I honestly do not know how she does it. She simply amazes me. Watching my daughter deal with her struggles associated with Autism and being non verbal, old and new, is truly inspiring.
It was one of those days where you look back on it and say...wow...it was a great day.  Thank you God.
Here is one quote and one poem that truly captures my feelings and I wanted to share with you today.... Living with silence teaches a great deal. When you cannot speak, you learn to share more from the heart. Instead of giving words, you give love -Author unknown

A Special Child
by Sharon Harris

You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we've been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all- "Real Love"

Natalie, Our Every Day Miracle

Let’s face it, as a parent of an autistic child, some days are better than others. Being a caregiver to any child brings with it unforeseen challenges. But, a relationship with an autistic child brings with it its own gifts including perspective, wisdom, faith and love. 
Last night was one of those 'not so great' moments. Not because Natalie suffered a meltdown or because she had a bad day at school. It was because my husband had a weak moment, and to see my strong guy hurting, is too much for me to bear.
After dinner, Natalie wanted to play with her Play-Doh Ice Cream maker (her favorite toy at the moment). Hubby and I were having some fun, making some cool ice cream. We are always talking to Natalie and trying to engage her. We ask her questions and try to get her to make choices, "Natalie, would you like the pink Play-Doh or the blue Play-Doh?" as we hold the two up by our eyes. This establishes eye contact and gives her the opportunity to make a choice. She usually does well with this. But last night, we could not get her to respond to us. I was okay and continued to play but Allan kept at it, trying to get her attention and asking her questions. However, Natalie was very quiet and in her own world. I looked up at my husband and his eyes caught mine. He looked so sad and said, "I just want to hear my baby talk" .....I died......

Daddy's Girl

My "rock" the one who is always so strong.....in that moment, he broke and I was broken, with him. In response, I cried and said, "I want to hear her voice too!" Then...silence. We said nothing more to each other after that. I felt horrible and even now, I can't take that teary eyed look he gave me out of my mind. I felt so sorry for him...I felt sorry for us, and I felt sorry for Natalie too.  
But today is a new day and I feel differently because I remember that it is my honor to be Natalie's mommy. Last night we had a weak moment. But guess what? We get to witness a miracle every day. For example,  Natalie calling me 'mom' again after a year filled me with joy. Natalie waving to a complete stranger in the supermarket blows my mind! Natalie randomly approaching another child in order to play causes me to dance in celebration and seeing her run to her big brother to give him a kiss is the most beautiful thing ever!  See, for me, all those little “normal” things,other parents take for granted every single day, are the highlights of my life. I was given the most wonderful little girl I can imagine and I was given the gift of time with an early diagnosis to help her out of this. That’s what I love about my Natalie, she makes me realize the joy in every single little moment, in every single little action of her life… and mine.  I feel honored and glad that she is mine and I am grateful that she was given to me instead of someone who would not love and care for her as much as I do.

My daughter, the preschooler

Not in the mood for a picture. But nonetheless

Natalie started preschool today. I was doing so well. I was so proud of myself. I was organized, I had everything ready. Natalie woke up nicely and she had breakfast. Dad and I decided that we would take her together on her first day. As soon as we got to the school, she must have remembered being there last week for the tour, because she started to skip and seemed excited. 
We  walked into the classroom and she immediately became comfortable and started to play with some of the toys. I spoke to the teacher and explained that she likes to drink lots of water and that she is a picky eater and I showed her the snacks I included. I handed over a blanket and small pillow so that she is comfortable during nap time. I was so proud of myself and then I walked over and gave her a kiss and said good-bye. Dad did the same. We started to leave and that is when Natalie quickly started to make her way towards us. We exited and then peaked through the window (without her noticing us). We saw Ms. Diana go down to Natalie's level and take her hand. Natalie was very attentive to Ms. Diana as she spoke. She didn't cry but looked nervous. We walked away and I was okay. In fact, I was a bit nervous for dad who seemed unsure and stopped a few times to look back. He was worried for her and he didn't feel comfortable. But we assured each other that she would adjust and that she would be fine. 

Natalie & Mom skipping along towards school

And now...well, now...I am a big mess. I have been crying off and on throughout the day. If you could see me now, you would be scared. I look and feel terrible. I can hardly type these words, my hands are as shaky as a leaf in the autumn breeze.  Natalie's been going to grandma's since she was four months old and loves her Grandma, so I am nervous about how she will react to being placed in a new environment with new faces, expectations and routines.
This is very different than when Austin was in preschool. I picked him up and I asked a hundred questions and he told me about his day and experiences. But I will not hear that from Natalie today. Natalie is a precious and vulnerable child. She is nonverbal, and that will make it hard for me to get any sort of report other than a hard-to-read behavioral change and what the teacher will tell me at dismissal.

I have to keep in mind that research and evaluation data indicates a strong trend toward improved student outcomes (academically, behaviorally, and socially) when they attend school. School is not only a place where children learn reading, writing and math. It is also a place where they learn to get along with others and develop social skills that are needed to interact adaptively in our cultural environment.

But I must also remember, and this is important, it ultimately really is JUST PRESCHOOL! It is supposed to be fun. I must allow her to enjoy making friends, learn new things, and just have FUN! 
One day down, many more to go.

Happy Birthday Natalie!

Last night I went to sleep the mother of a two year-old. This morning I woke up the mother of a three year-old. Your name means "Christmas Day" and you are surely a gift from God. Happy Birthday Natalie!  You are my heart and soul. I want to tell you how much I love you. But trust me, no words would be good enough to express just how much you mean to me and how much you are loved.

I look at you each night and watch the little outside corners of your mouth turned down, as they did when you were an infant. Your sweet rosy cheeks and those beautiful long lashes look just the way they did when you would sleep in my arms back in those early months. I miss those beautiful days. Our whole world was in our little home, just you and me. Dad would go to work and big brother would head off to middle school, and the two of us would sit quietly and study each other. I thought that I was only studying you, but now I realize you were studying me, too. It was in those days that we began our mother/daughter relationship, our bond. I learned all your facial expressions, every wrinkle and those dimples! I watched your eyes come into focus, your mouth start to make sweet little sounds, and watched as your ears learned to listen {sign} I took it all in. I waited for your first word, I wanted to know what your voice would sound like, to better understand your thoughts and feelings.  But I also relished in the quiet peace of just you and me. You make life so beautiful and full and complete.There is so much I admire about you. Growing up with challenges of communication and the inability to say all that you want or need to say is not an easy task, so I respect and admire your deep desire to fight hard every day, to try to say what you mean and for using your best tool: self-motivation. I’m not sure I’d find the strength that you display each day as you work to become a more able person. I can only admire your greatness. 

Thank you for being my daughter and for reminding me what life is all about, for helping me stop and enjoy all the moments.  I love you more than I could ever put into words and I am thankful for the miracle of you in my life.

Happy 3rd Birthday my sweet girl.

 You make me whole in so many ways.

With Love,

Mom

I See the light!

Today Natalie was evaluated by the school board. They had a speech pathologist and psychologist perform the evaluation. She also had to have ANOTHER hearing test done--even though she has already had 2 done previously. Please note that these hearing tests are a nightmare. Natalie seriously dislikes them and it is nearly impossible to get through it and everything goes downhill after that. To add to my stress, my husband was unable to join us and I was so nervous. I hardly slept, I was scared and I didn't know how I would be able to get through a 2.5 hour evaluation that included a hearing test. So last night and this morning, I prayed--A LOT! I prayed--DEEPLY.  

Natalie and I woke up and we had a good breakfast, I got her ready, put her in the car seat and off we went....Have you ever felt God's presence? Well, I felt it on that drive to the school board.  I truly felt God right there with me, giving me strength, reassuring me and I felt his warm smile upon me, letting me know that he was taking care of things...and you know what? I felt 100% better, I felt strength in knowing he was there and he was listening and he was going to deal with my concerns, my worries and that he was taking care of us.  

So guess what? God took care of everything! Natalie took the hearing test and she was so compliant, she was wonderful! They were able to give her a much more thorough exam and they took their time and I was told that she passed and her hearing is perfect. I was flabbergasted! and then I whispered, "Thank you Lord." Next, the evaluation. This team of ladies could not have been more wonderful! They were so sweet, so caring! I felt like they loved and cared for Natalie as much as I do. I wish they would have been the ones that first broke the news of Autism to me. They were so sensitive and positive. They told me that it wasen't my fault, they told me that Autism is not a death sentance, they said that I was doing everything right and that I was doing everything that they would do if Natalie was their daughter. They hugged me, they smiled, they were incredible, so again, I said, "Thank you Lord." 

We have to retun on September 16th for the results. But these ladies went ahead and told me that Natalie qualifies for Full time preschool and therapy as of September 17th. They will also provide door to door transportation. 

"Thank you God!" 

So I am happy, I see a light at the end of this tunnel. I see hope and I am so thankful to God because with him ALL things are possible and he does listen and he is there. 

    Dearest God Our Father, I love You! I adore You and I Thank You!

Walking the road with a child with autism is not easy

Autism cannot be seen, it is invisible, known only to the person who has it, others see what autism manifests but nothing else, and when you explain it it sounds like something so difficult to imagine! 

It is very difficult to explain autism, mothers and fathers who have a child with autism often say that it is impossible for someone who does not live close or have a child with autism to understand. Yet, we all agree that it is important to try and understand it because we are all part of the same world and those who are different still deserve respect and opportunities like anyone else. 

A child with autism must be allowed to be a child and at the same time we must help that child. We cannot lock them in a therapeutic room and take away their childhood because the damage would be greater. A child with autism CAN and never forget it, they just need more help and different types of aid than others do, and not for lack of ability a child with autism has the same abilities as any other. What happens is that socially they behave differently and it is up to us to help these children understand that they are a part of a society that will not reject them for being different and that with learning they can be very happy within society. Do not judge these children, instead help them. They want to do, and if you help them they can make it. We did not ask to have a child with autism, we simply did, just like it could have happened to anyone else even to you. Yes, I am dealing with my own demons and I am doing my best to get my daughter all the help and aid that she needs. But if society helps us than everything would be easier.

Thanks for listening.

11 Reasons Why Special Needs Parents Rock

1. Because they never thought that "doing it all" would mean doing this much. But they do it all, and then some. 

2. Because they've discovered patience they never knew they had. 

3. Because they are willing to do something 10 times, 1,000 times if that's what it takes for their kids to learn something new. 

4. Because they have heard doctors tell them the worst, and they've refused to believe them. 

5. Because they have bad days and breakdowns and bawl fests, then they pick ourselves up and keep right on going. 

6. Because they manage to get themselves together and out the door looking pretty damn good. Heck, they even make sweatpants look attractive.

7. Because they are strong. Who knew they could be this strong? 

8. Because they aren't just mothers, fathers, husbands or wives, cleaners, chauffeurs, cooks and parents who work. They are also physical therapists, speech therapists, occupational therapists, teachers, nurses, researchers, coaches and cheerleaders. 

9. Because they understand their kids better than anyone else does - even if they can't talk or gesture or look them in the eye. They know. They just know. 

10. Because just when it seems like things are going OK, they're suddenly not, but they deal. They deal even when it seems like their heads or hearts might explode. 

11. Because when they look at their kids they just see great kids. Not kids with cerebral palsy/autism/Down syndrome/ADHD/developmental delay/whatever label. This is for all the parents who ROCK!!!!!!!!!!!!!!!!!!!!!

This was borrowed from the Facebook wall of Autism Spectrum Disorder, through my eyes Discussion Group https://www.facebook.com/groups/470628153006368/

From the bottom of my heart: Thank You

I just wanted to take this opportunity to thank you for your prayers, your hugs, wonderful comments, phone calls and all the love & support you have shown me and my family. It is because of God and the wonderful support we get from so many that we continue to grow stronger and stronger each day. It truly does mean a lot.  I have been so humbled by your compassion and it is truly incredible how many people have shared their own stories of how they have been affected by Autism.  That just goes to show that Autism is much more common than a lot of people think. I hope that, soon, the stigma attached to this will go away.

Once again, Thank You. All of You.

A picture is worth a thousand words

Hi Everyone, I thought that I would write about something that Natalie's therapist and I are working on in order to establish communication with Natalie. It is called the  Picture Exchange Communication System (PECS). I've had a couple of mommies ask me what PECS is and I thought it would be good to discuss it here. 

PECS  is a binder that typically starts with pictures of desired objects (such as food, places, and people) and progress over time to pictures with sentence strips (for example: I want ice cream) and then, finally move from pictures to words. PECS can also be used to create schedule boards for providing a visual schedule of the child’s day. But for now we are working on a picture binder. Natalie's therapist has had me doing homework this past weekend. I purchased a small binder (5 1/2" x 8 1/2") along with dividers. I also purchased some Velcro  I printed pictures of familiar things around our house. These pictures are 2"x2" and I had them laminated. I then placed Velcro strips along the plastic sheets and attached the pictures to the Velcro  I divided the binder into people, places, food, animals. In people there is a picture of mommy, another of daddy, brother, grandpa, grandma  In foods there are individual pictures of Natalie's favorite foods and snacks. Once Natalie learns to use this system she will be able to, for example, pick a picture of her favorite cereal and give it to me to show that this is what she wants to eat. Or perhaps pick the picture of the pool, from places, to communicate that she wants to go in the pool.  The binder is small and easy to carry everywhere. This will be used at all times, during outings to the park, the mall, a restaurant or vacation. 

I believe that PECS will play an important part of Natalie's success and I am excited and hopeful to see this work.

Dear Sleep. I Miss You

Please Note: I am writing this post at 4:00 am. Unfortunately, being awake at this time has become the norm for me in the past 2 months. As I recently found out one of the common issues faced by parents of kids with autism is sleep deprivation. For some reason, sleepless nights often seems to come with raising a child with Autism and parents everywhere search for answers. Sounds odd and funny I know, but it’s true. If you don't believe me, simply google "Autism and sleep disorders" and you will get a flood of articles and forums full of parents asking for and dispensing advice regarding this groggy issue.
Natalie goes to sleep at 11PM every night. You cannot get her to sleep before that time. If you try, she will scream, cry and never stop until you finally allow her to get out of bed. It has not been uncommon for Natalie to wake up almost every night between 3AM and 4:30AM and simply be awake for the rest of the night (and morning). And it’s the staying awake part that makes the sleep deprivation so difficult and different from other aspects of child raising. Every parent has to deal with kids waking up at different times during the night, but usually it’s tied to a specific reason or easily identifiable – such as an illness.

It would be a lot easier if I felt like I could be productive for all of these hours I’m awake with Natalie. But it’s a lot of work being awake with her. She is either asking for a different show on TV, asking for snacks, trying to play with loud toys, or getting into some other type of trouble.

I was hoping that cutting down Natalie’s TV time and giving her a soothing warm bubble bath in the evenings would help her to sleep through the night more frequently. However, this is not the case. Additionally I thought that if she had more activity throughout the day it would help her to sleep all night. The added activity did seem to help for a few nights, but that is no longer the case. That is one element that makes this situation challenging: it’s so unpredictable. Invariably the question comes up: why does she wake up and stay up? And the answer is: nobody really knows. 

There are times when I hear her belly growling and I offer her a snack or maybe it is a noise just outside her window or mommy’s snoring (Lol). Of course, we have no way of finding out 100% what the issue is at any given time because Natalie can’t tell us.

We took Natalie to see her pediatrician yesterday and he suggested we give her 1mg of Melatonin in the hopes that it’ll help her sleep consistently. We will try this tonight. Fingers crossed.

But for now the rest of the day will be like so many the past couple of months – filled with lots of caffeine and me pushing myself to be as alert and productive as possible.