Renewed Hope

It all started with a dream. We can't really control our dreams. Are they just random impulses from our brains we try so intelligently to perceive as something deep and important, or are they just crazy tricks our minds play when we sleep? I often dream that Natalie is telling me, "I Love You." I know it may seem silly to some and although she demonstartes her love for me daily, I still dream of the day that I will hear her sweet voice say those three words.
I believe that God has built my faith by giving me a dream. I believe that this dream shows me what it is that He wants me to do and how He plans to use my life and that of Natalie's to impact others.   Perhaps you don't agree with me, but yesterday I felt like I was having a dream, except it was real. Today, I still feel like I am floating on a cloud in the heavens. Was it real? Did I dream that Natalie said those words? No, she didn't say,  "I Love You." But the impact of her words still struck right through me and renewed my faith that one day she WILL say, "I Love You" ...and so much more
Here is what happened shortly after we arrived for Equestrian therapy yesterday:

Dr. Burrows: "Natalie, do you want to ride a horse today?"

Natalie: (silence)

Dr. Burrows: "Natalie, look at me, do you want to ride a horse today?"

Natalie: (silence)

Dr. Burrows: "Well, what do you want to do, ride a chicken? "

Natalie: "No, Ride.....A....Horse"

Dr. Burrows: "Okay, let's go ride a horse."

Me: (Standing frozen with mouth wide open and tears falling down)

The joy in that moment was immeasurable

I am watching, waiting to see what comes next. But today, I am hopeful.

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

An update

Hello, Sorry for the delay in posting. Natalie had her second EEG last week and I must admit that it wasn't as bad as I thought it would be. Placing the cables on to her head was the most difficult part. She was so scared, she cried and screamed. I held her tightly the entire time, but at one point she screamed for her daddy...and he almost tackled me to get to her (it was so cute and so Super Hero of him). He took her in his arms and she immediately calmed down. She felt so safe with him. It reminded me of myself as a child. I always felt safe in the strong arms of my father. I felt like no one could ever hurt me, as long as he was with me. I am sure that Natalie felt the same way.  They were inseparable the entire time that we were there.  They even fell asleep together. 
The rest of the time Natalie was on the iPad (with daddy), watching Disney Junior (with daddy), eating (with daddy) and playing games (with her daddy). No one could tear them apart, and I am so thankful for that. I am so grateful that she has such a loving daddy. I am so grateful for his devotion to us, his bravery and strength, for his love. I could not have asked for a better man.
We should have results on Monday, next week. I am just praying for the best.
Here are some pictures I took during the procedure.

Natalie and Nutmeg, the hospital service dog. He was so sweet and Natalie loved him.

On the iPad, with her daddy

Taking a nap with her daddy

The journey continues...

Hi everyone! I'm back, I didn't mean to take a break, it just kinda happened. So much has been going on lately and I've been dealing with so many feelings...and honestly, I feel a little drained and not much for writing lately.

Natalie had all her tests done. It was a horrible day. They had a difficult time finding a vein for her IV and had to poke her twice. She screamed and she was in pain..despite the numbing cream (that stuff doesn't really work).

But the worst part is that we nearly lost her...

Natalie did not respond well to the sedative (Precedex) ...with about 1-hour left of tests her blood pressure dropped incredibly low...and her pulse plummeted. There were alarms going off...red lights were blinking and doctors and nurses were rushing about. I was so scared...and at the same time I was trying to stay strong. They reduced the dosage of the sedative and she slowly started to recover...and then, it happened 2 more times! Allan, finally told them to take off the sedation. He said we didn't care for these tests and we would rather not test than lose our baby. So they agreed and the sedative was taken off. Even then, the pulse dropped another time (35 beats per minute). But then...she was fine (Thank God). They were able to finish all the tests except the genetics test. When she awoke, they had to give her an IV of fluids to help push the medication out and get the blood pressure back up. Natalie drank a lot of fluids on her own but it wasn't enough and an IV of fluids had to be given. She slept the whole way home and she continued to sleep at home. I had to wake her every hour and offer more fluids in order to keep the blood pressure up. By the next day, she was 100% back to normal.

So we got a call from the neurologist last week and she asked to see us regarding the test results. Allan and I went to see her and she told us that the MRI and hearing test were both normal. But she was worried, because her EEG showed very rare spikes. These spikes are an indication of absent brain seizures. But she said she couldn't be sure, she needed another EEG done, but this time it would be for 8 hours and while fully awake. Of course, I am devastated, this is the worst news and we did not expect these results. So I am praying that the results are a "fluke" from the machine or something else...I pray that she is not suffering from seizures.

We are going back to the hospital on Thursday and we hope that it will go smoothly. I'm not sure how such an active child will be able to sit/lay through 8 hours on a hospital bed with all those cables on her head. Especially because Natalie is very sensitive about her hair. I cannot even wash her hair without having her scream and cry. I wish I could talk to her, I wish that I could hold her hand and explain that the EEG will not hurt and that I will be we won't leave her and we will all be there with her. I still plan on talking to her and explaining that she does not have to be scared. But I wish I could know that she understands what I am telling her. We will do our best to accommodate her and keep her entertained and comfortable. My parents will also be with her and we will bring all her toys and iPad and hopefully she will be okay. Please say a little prayer....Thank you!

Scary start to our New Year...

Happy New Year! I must admit that I am not sad to see 2013 go. It was a very painful and trying year for me. We were introduced to Autism and our life took a path that I never imagined we would have to travel. It was a year of lessons and many tests and trials. 
Unfortunately, this new journey will be with us in 2014 as well. But I am praying, and I am hopeful, that this year will be better.
2014 starts with us at the hospital. Natalie is scheduled for an MRI, EEG, deep Audiology and Genetic testing tomorrow. We will arrive at the hospital at 8:45AM and leave at 4pm. It will be a long day. I am thankful that my husband, Austin and my parents will be there to support me and Natalie. 
Natalie will be sedated throughout the entire process. I spoke to the nurse on the phone yesterday and she gave me some instructions. I thought that sedation was going to be given by an oral medication or a mask. However, because of the amount of hours that she will need to be under, the sedative  will be administer by IV. I almost fainted when the nurse told me this. Natalie goes crazy during her vaccinations, I can't imagine an IV. I asked if I could be there with her. The good news is that Allan and I can be in the room with her for all of the procedures.
Some of you may be wondering why Natalie is having all of this done. Well, up until now we have received what they call "educational diagnosis." It means that an autism specialist:

• Observes Natalie and asks about her social skills, language skills and behavior and how she has developed and changed over time
• Gives Natalie developmental tests covering speech, language, developmental level, and social and behavioral issues
• Present structured social and communication interactions to Natalie and scores the performance

However, the neurologist asked me if I wanted a medical diagnosis/proof that she is autistic...and we agreed that we did want medical proof. The school board explained that if we get a medical diagnosis, Natalie will be entitled to triple the benefits from the school and therapists. So because we want to provide Natalie with all the tolls needed in order to succeed, we agreed to the medical diagnosis. Additionally, the neurologist is a little concerned because Natalie tends to regress. She learns new words and then, one day, she doesn't seem to remember those words at all. So the specialist wants to be sure that there isn't anything else going on that we can't see.

MRI

The MRI is used to gather more data and detail. It will help Natalie's doctors, therapists and educators in order for them to target what therapies and way of learning will benefit her the most in order to guarantee more success. 

Data from the analysis will also be able to provide a gauge of autism symptom severity in addition to simply distinguishing between autistic and typically developing children. Stanford University researchers say they have identified key differences in the brain gray matter of children with and without autism.

Using brain imaging, the researchers found that a specific network within the brain associated with social communication and self-regulation has a unique organization in autistic children.

EEG

I'm crying just looking at this picture...

The EEG works by recording electrical signals that come from brain activity. Several dozen electrodes are held against the scalp. An EEG determines if the patient’s level of alertness or consciousness is normal, if abnormalities exist in one specific part of the brain, if a patient has a tendency to have seizures or convulsions, and if a patient is likely to have a particular kind of epilepsy. Natalie's neurologist also explained that many times, when a child is non verbal it isn't because of autism. Instead, it may be because they are suffering from absence seizures. An irregularity in the brain's normal electrical activity causes absence seizures. Most absence seizures are less than 15 seconds long. It's rare for an absence seizure to last longer than 15 minutes. Absence seizures strike suddenly without any warning signs. If this is detected by the EEG, then Natalie will be given medication and she will start to talk normally, and very quickly. However, the neurologists says that this is something we would not want to see in the EEG results.

GENETIC TESTING

There are many reasons Genetic testing is beneficial.  Here are a few of them:

• If a genetic cause for your child’s ASD is identified, it might lead to changes in his/her medical management.  
• There might be recommendations for evaluation, testing or treatment that are specific to the genetic diagnosis, which you would only know about if your child were to have genetic testing.
• Because genetic conditions are often (though not always) inherited, the diagnosis might have implications for other family members, who might also need to pursue specific medical follow-up.
• Having a genetic diagnosis might give you more information about what to expect in terms of your child’s medical and developmental future. 
• Having a genetic diagnosis might make it easier for you to connect with other parents or families of children with the same diagnosis. This type of support can be very valuable to families.

Audiology

Children with autism can have difficulty with learning and language that isn't the direct result of their autism, but of an additional condition known as Auditory Processing Disorder (APD). APD prohibits children from understanding and processing language in the average or expected way. Since this disorder can have many individualized symptoms and components, to get the proper treatment and instruction children must first be properly diagnosed by an audiologist and have a deep hearing test. 
So there it is, just a summary of all that will be done to Natalie tomorrow...and I am so scared. I am terrified for her. I hate that I can't explain or give her a clue as to what to expect or what is going to happen and why. She won't see it coming and that will make it scarier. The best I can do is be there and hold her hand and (pretend) to not be scared and be strong for her.

Please say a little prayer for us tomorrow.
Thank You.

Merry Christmas

 

Merry Christmas, From Our Family to Yours

Christmas is time for family, time of reunion, time to catch up with loved ones. Time to give your heart the wings it needs in order to express your feelings. It is a time for Peace.
A time for Laughter, Children and Gifts.
Time for the Candles that Illuminate the Gratitude we feel to be alive and feel the love in our hearts. 
Christmas is the celebration of life, because we celebrate the birth of Jesus in all of its expressions. God is born in each of us and he comes back to life in all of his creations. Every Christmas is the confirmation of the Promise of salvation and eternal life for all.
This Christmas may we all have a heart full of sighs for the love that surrounds us. May we all feel the family, which is physically next to us and those which accompany us from the heavens. 
May we all feel, from heaven, the renewal of God's promise of love.  Merry Christmas to All
 

Guilt

Learning that Natalie has autism came as a tremendous blow to me and our entire family. One of the first emotions I experienced, once I accepted Natalie's diagnosis, was the feeling of guilt. As parents, we have the major task of protecting our children from danger. As a mother I often wonder if something I did or failed to do during pregnancy might have made a difference in Natalie.
I have read so much about autism and because there is no proven cause, there is much speculation and many theories. I have questioned the safety of where I live, our water supply, I have wondered about toxins in the environment or in my home. I have questioned vaccinations, and asked myself, "Did I take care of myself when I was pregnant?"
I even had someone speculate that I had "bad" genes and overheard a woman at the hair salon say that autism is caused by ignorant parents who should have taken parenting classes before having a child.  These two incidents alone, were emotionally devastatting to me. Because although they made me angry---they also created doubt and caused me many sleepless nights.
When picking up Natalie from school, I chat politely to the other parents.  One mother mentions that her son has extra speech therapy.  Another one talks about the social skills group she enrolled her daughter in.  Another one declares that she just signed her child up for Karate with an aide to help him.  Despair and guilt wash over you.  “These parents do so much” I think to myself.  “How do they do it?  Where do they find the time and the money? Therapy is so expensive and our insurance covers so little. But I should do more.  As the guilt factor sets in, I shamefully accuse myself of being a bad parent.

But I do know that I try. I try, every single day, to be the best mommy that I can be. And I was entrusted with this beautiful little girl.  But although I no longer spend all my waking hours feeling guilty or even wondering what actually caused it. That little guilt nag is always in the back of my mind.