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.

"I Want More"

I have not blogged much lately and I must admit that part of the reason is because I have felt discouraged and sad. It isn't easy. I am impatient. I want Natalie to be okay and I sometimes feel like I am racing against time. I want her to be able to communicate by using her words as quickly as possible and I'd love for that to happen before she enters her elementary school years. But it isn't happening as fast as I would like and I become desperate. I don't reflect these feelings to anyone but I feel them on the inside. I sometimes feel so angry that I have this beautiful child who is so loving and giving but who is locked in her own mind. But, when I find myself getting frustrated and angry, I do think about how Natalie feels: What's it like for her? That's when I realize that I can't fall apart, I can't let her down, and I have to be strong and do what's best for her. 
Lately, I have felt so impatient and this caused me to forget something very important...God doesn't do things on my time...he does things on his time and I must have faith and I know that I need to slow down and be patient. I must learn and I must trust in the Lord. God's timetable is not the same as ours. He knows better than we do when is the best time for our prayers to be answered. Unfortunately, my mind sometimes becomes clouded and I forget this... But God was sure to remind me in a beautiful miracle yesterday.

I always give Natalie a chocolate treat when we get home from grandma's house (Natalie loves her chocolate). Last night I put some mini m&m's in a small bowl for her as we sat together on the couch. When Natalie was done she held out the bowl in front of me.... and she SAID...

"I want more" 

Even now, the tears are flowing as I am writing this...It was the most joyous moment since the day she started to call me mom again. I was overwhelmed and, of course, I looked at her and with a big smile replied, "Yes! you can have more!" and I put some more in her bowl.
You must understand, we have been going to language therapy for months and the 2 words that the therapist and I have tried to teach her to say are, "help" and "more" but sadly, Natalie never said either word. The therapist would explain how important these two words were and I say these words all the time in order to get her to say them. But last night, she not only said the word "more" but she spoke a complete sentence...

"I Want More" 

Those 3 words were amazing and it was a huge milestone! I pray she keeps them. I called my mom and my husband (who unfortunately was still at work) and I told Austin and posted to my Facebook page. I was elated! and I wanted to share my joy with the world! About an hour later we were playing with her porcelain tea set. We use apple juice and pretend it is tea and we sip through our tea cups and when the "tea" was all gone, she handed me the empty tea pot and pointed to the apple juice. I said, "Natalie, do you want more?" No response..."Do you want more tea?" She, smiled and nodded. "Natalie, more?" she pointed to the apple juice again. So I stood up, took the apple juice and placed it back in the fridge. She followed me and frowned. she looked down and then up again and she SAID, "I want more" I immediately jumped for joy and said, "Okay, yes! let's have more!" and I took the apple juice back out and refilled the tea pot. These are all skills that I owe to Natalie's ABA therapist, Kristy and her language therapists. They have really trained me in order to maximize retention and push Natalie to use her words. I am so thankful to them and I am so happy for Natalie, I know it isn't easy for her, but she tries so hard and she is doing great things! 
It is beautiful how God does everything at the right time. We cannot question him we cannot lose faith, we must pray without ceasing.  It is His time, His will. I forget this some times but I must work harder to remember.

Our Father knows what's best for us,
So why should we complain ...
We always want the sunshine,
But He knows there must be rain.

We love the sound of laughter
And the merriment of cheer;
But our hearts would lose their tenderness
If we never shed a tear.

Our Father tests us often
With suffering and with sorrow;
He tests us, not to punish us,
But to help us meet "tomorrow."

For growing trees are strengthened
When they withstand the storm;
And the sharp cut of the chisel
Gives the marble grace and form.

God never hurts us needlessly,
And He never wastes our pain;
For every loss He sends to us
Is followed by rich gain.

And when we count the blessings
That God has so freely sent;
We will find no cause for murmuring
And no time to lament.

For Our Father loves His children,
And to Him all things are plain;
So He never sends us "pleasure"
When the "soul's deep need is pain."

So whenever we are troubled,
And when everything goes wrong,
It is just God working in us
To make "our spirits strong."

~ Helen Steiner Rice ~

16 Years Later, An Unexpected Ride But A Happy Life Just The Same.

   

Sixteen years ago on November 30th, I was an excited bride ready to walk down the aisle to a man whose character and heart had exceeded all the things I had hoped for and asked God to bring me. When Allan and I started our marriage we thought  that our time was our own, that there would be time to think and dream together, and that we would enjoy the "better, richer and in health" parts of the vows we took.  But somewhere along the way, expectations collide with real life and our hopes and dreams give way to hindrances and obstacles that begin to make marriage hard. We never thought it could happen to us. But it did, and we are now among those who deal with the daily stress of caring for a special needs child, finding ourselves disappointed and discouraged at times. But, I have a truth for you:  the love I have for my husband today has more depth, more strength, and more trust than it did the day we made our vows to one another.  That love has had some days and nights that tested it, but we’ve chosen to keep loving each other during some times when we didn’t feel all those warm, mushy feelings.
Sixteen years later, we know that marriage isn’t all roses and happy feelings.  It doesn’t always feel like it did that day sixteen years ago.  It feels different, but it’s stronger and it’s better.  I have a deeper respect for him now than I did then.  I have a steadier love for him.
We had an opportunity to leave Natalie at grandma's house last night and Austin was invited to a friend's birthday party. So we decided to celebrate it a day early.     We were at dinner and we started to reflect on the last 16 years. We have truly grown up together. But through it all we have been so happy. We have so much in common, in that we love to laugh (especially at each other) and we enjoy staying positive. We focus a lot on our children and we value our family.   We talked about our unexpected journey with Natalie. You see, "special needs parents," no matter what our diagnosis is; lack time and energy, we suffer from high levels of frustration and unrelenting stress that can take its toll on a marriage. Marriage has its own difficulties, but with an autism diagnosis, we go beyond the normal struggles. We have extra financial strains resulting from medical costs too.
However, Allan and I understand that we cannot let our child's autism interfere or destroy our marital relationship. Because years of research around the world, shows that  "the parents' relationship with each other trumps everything else!"  
It was a very special dinner. We talked openly about our feelings emotions and stresses as they relate to the care of Natalie. In times of stress, we tend to keep everything bottled up inside or explode over the slightest disagreement. But last night we shared insights about everything — the good, the bad and the ugly. We took the time to really listen to each other and I found that I love this man so much more than I ever did before. It's amazing, he is amazing. He has such a calm demeanor and a gift for seeing Natalie's challenges as "no big deal." He loves our daughter so much and completely accepts her for who she is--with or without words.  He is so patient and he puts all of his faith in God. I, on the other hand, am not as accepting of Natalie's diagnosis. I still cannot get past it. I still fight through it--every day. But my husband and I provide the perfect balance to each other and I am so thankful for that.  We respect each other and we never blame each other -- we only support one another. You see, we understand that a meaningful, beautiful life together, and a good and growing marriage, do not have to end with a child's diagnosis of disability. We have had to learn to lean often and hard on God's promises      For better or worse really does means for better or worse.  The challenges of raising an autistic child can become a blessing because we are in it together and we are a team. We make time to communicate about schedules, feelings and needs. We have to deal honestly with our frustrations. We get assistance and support and we seek help quickly and we take time for each other. We have learned that a strong marriage is essential. Without it, caring for our daughter is that much more difficult and challenging. 

So Happy Anniversary darling! Thanks for being on this ride with me, being my partner in parenting, and putting up with all my antics and whims! I Love You