Wednesday, July 31, 2013

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

Tuesday, July 30, 2013

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.

Monday, July 29, 2013

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.

Sunday, July 28, 2013

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.

Friday, July 26, 2013

An Apology From Your Child’s Former Teacher

Happy Friday Everyone!

I wanted to share a beautiful letter written by an awesome mommy blogger that has 2 wonderful children. One of them is neurotypical while the other has Autism. I love her blog and encourage you to follow her as well. I find her to be incredibly honest and a great writer. I can really connect with her on many of her experiences with both her neurotypical and autistic child. 
The letter is titled: An Apology From Your Child’s Former Teacher here it is:

An Apology From Your Child’s Former Teacher

Dear Parents of Special-Needs Children I’ve Taught In the Past,
I need to make a big apology.  You see, I’ve been teaching now for fourteen years, but I have only just recently joined your ranks.

Thursday, July 25, 2013

Cruising with Natalie...

Hi there!
Okay, so we are going to be taking our cruise vacation very soon on Royal Caribbean’s Oasis of the Seas. We are so excited!
Natalie is like a little mermaid. She loves, loves, loves the water. We can't wait to share in her excitement and watch her play all day in the water. But we do have some fears.This is a very big ship (one of the biggest in the world) carrying over 6,000 passengers!  I am not worried about sensory issues with Natalie. She is not  sensitive to loud noises or bright lights (during a production) so we are okay there. She does, however, get uncomfortable in small spaces or crowded rooms. For example, in the past she has had meltdowns in crowded restaurants or small restaurants. This is why we usually pick eateries with high ceilings or that offer a big airy atmosphere. During Natalie's first evaluation for Autism she was evaluated in a small room that contained 3 therapists as well as mom and dad. Needless to say this didn't go so well. Her second evaluation took place in another location with a big room and she performed much better there. There may be an issue with dining on the ship but Oasis has so many dining options and I am confident that we will manage this well. What most bothers us is that she likes to wander off and she is quite fast! Allan, Austin and I always use the tag team system and we keep all eyes on her. We have discussed safety precautions and I have asked my travel agent for some tips and suggestions.

Last weekend we saw a daddy and daughter at the mall. The little girl had a cute animal backpack on her and the animal’s tail extended to become a harness. It was like this one:

Allan and I looked at each other and knew we had to have one for our cruise vacation. So I mentioned it to Natalie’s therapist and she told me that Target sold them and highly recommend it as well. So off we went and purchased it. This should help us keep her from wandering away. Even though we will have the added security of holding her most of the time and never taking our eyes off of her. 

I am sure that we will have lots of fun and Natalie will enjoy the experience. Especially because she will be in her favorite environment ~ The Water. Fingers crossed, Lol

here are just a couple of things we KNOW Natalie will LOVE:

Has anyone been cruising with kids or on The Oasis? Please feel free to comment below for any tips and suggestions. Thank you!

Wednesday, July 24, 2013

Proud Mommy Moment!

Hello Everyone!

Natalie did something very cool at therapy yesterday and I am so proud! 

Kristy (our therapist) asked if Natalie recognized shapes. I told her that I wasn't sure. I explained that Natalie actually LOVES these educational videos we have her watch online. These videos include teaching of shapes, colors, letters and numbers. But I wasn't sure if Natalie was actually paying attention to what was being taught or if she mostly enjoyed the interaction on the screen. Kristy wanted to try. She placed a wooden cube with pre-cut shapes on the table. Here is a picture of the cube she used:

I was floored and my jaw dropped. Kristy held 2 shapes in her hand, a star and a square. She asked Natalie to take the star and Natalie grabbed the star and placed it into the appropriate spot on the wooden cube. Next, Kristy held an oval and square and asked Natalie to pick the square, Natalie did it again! Kristy, did this a few more times and each time Natalie was successful in choosing the right shape and placing it into the cube! I couldn't believe it! It is incredible for me to see that, even though Natalie does not speak, she knows her shapes! Wow! Those videos really work and my baby is AMAZING! 
Very happy & proud mommy moment right here.

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Thursday, July 18, 2013

Our New Journey

Natalie is our beautiful 2-year old girl who loves to smile and make us laugh. From birth she hit her milestones normally but was very slow to learn words. We thought it was no big deal especially because she was being exposed to English and Spanish daily. Everyone learns at their own pace and eventually she would be talking our ears off. By 24 months Natalie knew 21 words and, although it was considered a low amount for her age, we were still okay with her development and thought she would catch up soon.

June 12th 2013
My hubby and I were having Natalie evaluated, because although she spoke 21 words at 24 months, she was now only saying 4 words at 33 months. One of her first lost words was mom…this broke my heart.

At the evaluation we thought they would tell us she needed a speech therapist to get her on track or that she had a hearing problem...
What we were told at the end of that 4 hour session would alter our lives forever.

“I am sorry, but Natalie hits all the red flags for Autism.” 

Suddenly, I couldn't breathe…I was crushed... I sobbed…I couldn't speak. 
I refused to look at the therapists, I was angry at them. “How dare they associate that word with my perfect little girl?” I can’t remember anything the therapists said after that, I was in shock and disbelief and I stopped listening. My entire world was at a standstill and all I could do was stare at my beautiful little girl and wonder what I had done to cause this. How could I have avoided this? This was my fault, I did something wrong. I failed her as a mom. The guilt was overwhelming. This scene remains painfully sharp in my memory.

Allan and I didn't say much to each other when we left. I cried and cried in the car. Why? How? Suddenly, all of my anger, my pain, turned to strength and I vowed to do whatever necessary to help our little girl, and Allan agreed. We decided that together and as one we would fight for her and get her whatever help she needed.

The world seems different to me now. I stare at children at the park and watch as they call their moms, “Mommy, mommy come look!” I notice that the mom is unmoved by her child’s exclamation as she goes over to her child. I realize how so many parents take so much for granted, things that I also took for granted with our son Austin. I think to myself, “wow, what I would give to hear Natalie call me Mommy.” Most parents don’t think about how special it is when their child calls them mom or dad. Most siblings don’t think it is a big deal to hear their little brother or sister call them by their name. But for me, it would be a day of celebration. I haven’t heard Natalie say mommy in 8 months and Austin has not heard her call him by his name in about the same amount of time. The day she says mom again I will fall to my knees and thank God, I will cry and I will celebrate the victory. I will buy a cake and we will rejoice. Yes, it's that important.

Today, she only remembers the name Daddy and that is what she calls her dad, her brother, and me…We are ALL Daddy and I am so glad she has kept that word, but I pray that I will hear her call me mommy again soon, I pray that she will one day say, “I love you.” What so many parents take for granted, I yearn for everyday.

I am weak but God is my strength. I am tired but God is giving me rest. I am nothing. He is everything.

Please help me reach my Goal!