Monday, May 17, 2010

Baby Brother

By now most of our friends and family are aware of our most recent and exciting news... we are expecting a new addition to the family in early November!  We are very excited and of course can't help but feeling a little nervous as to what this momentous change will mean to our family.  

We had a prenatal screening at 13 1/2 weeks and things looked great according to the sonogram.  It was breathtaking to see our new little one in action.  At only 13 weeks, we could already see the tiny and perfect hands and feet in action.  The doctor stated that he was 98% positive that this was another BOY!  How exciting!  I think others who had convinced themselves that this new baby would be a girl were a bit in shock upon hearing the news, but I knew!  I knew almost immediately that I was carrying a son.  Mother's instinct?  Perhaps.  We will have another sonogram around 18-20 weeks and we will probably receive a 100% determination at that time on the sex and wouldn't it be hilarious if we were wrong, but I don't think so... it's a boy and his name will most likely be Jonah.  

We were uncertain as to how to explain such a complicated milestone to Gabe.  We bought a book written specifically for children and used that to guide us in our explanation.  Gabe seems to understand the basics and even talks about his "baby brother."  He says things like, "Baby brother is growing!" and "Baby brother in November."  One day he smiled at me and even said, "Baby brother play trains!"  I love seeing him excited about this life changing news!  One thing that completely cracks me up is when we discuss the baby growing in my tummy.  Each time this is mentioned, Gabe lifts up his own shirt and looks at his own tummy with a puzzled look on his face.  I keep reassuring him that the baby is growing in MOMMY'S tummy and NOT his!  Bruno also jokes that Gabe probably wonders when and why mommy ate a baby (because how else would it get in my belly?)  Who knows what Gabe is really thinking about all of this, but he seems to be excited in his own way and more accepting of the news than I expected.  I think he will be in complete shock when baby brother does finally make his appearance!  It will no longer be the "Gabe show" all day every day in our home, but this will be good for Gabe as well as for his father and I.  We feel quite blessed!  

Thursday, February 25, 2010

Strep/PANDAS... our story

Gabe tested positive for strep again today. I knew our few days of "thinking" Gabe was well was too good to be true. Poor guy was up for hours during the night, requesting a lot of water to drink, which I admit should have been a clue to me that he was not feeling well. Another clue I missed was his new "ritual" he began last night. He flapped his hands several times and then grabbed his legs in what resembled a Michael Jackson dance move. He did this repeatedly and I laughed it off as just another funny "stim" Gabe had created. It turns out that was a new ritual that was most likely due to his current strep infection. He tends to have flare-ups of increased OCD, verbal stimming and ritualistic behavior when he has a strep infection. This started when he was three and awoke in the middle of the night and began moving around frantically, completing complex rituals in each corner of his room. I was unable to engage him at all that night during the hours he spent performing these rituals. The next day, he continued to complete rituals in other rooms throughout the house. I was disturbed to say the least to watch him behave this way and I reached out to a friend who mentioned PANDAS to me. Once I researched it, I was convinced this is what was plaguing my son.

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Children with PANDAS usually have a dramatic, "overnight" onset of symptoms, including motor and vocal tics, obsessions and/or compulsions. This onset of symptoms is generally preceded by a strep throat infection.

The next day I made an appointment with my son's pediatrician and explained my concerns to him. I requested a strep test and the pediatrician looked in Gabe's throat and informed me that since Gabe did not have a red throat and no other "signs" of strep throat, there would be no need to test him. I argued that I had just listed off quite a few reason for the test (all relating to my research on PANDAS). He reluctantly agreed to test Gabe, but made sure to go out of his way to make me feel very foolish for requesting such a test. (I do not think he had even heard of PANDAS, which is scary since he is in fact a pediatrician.) I already knew this particular pediatrician knew very little about Autism and would not be surprised if he was chalking Gabe's symptoms up to Autism (the thing he knew nothing about).

I have to admit that it was more than satisfying when the doctor returned with his tail between his legs and a look of bewilderment as he explained that Gabe's strep test was positive. He just stared at me in disbelief. Wow! Imagine that... a mom knowing her child better than a doctor. Hmmm...

We treated Gabe's strep with an antibiotics and in time (approximately 6 weeks if I remember correctly) his PANDAS symptoms faded. I believe that my son's strep is systemic, meaning that he has chronic strep in his body. We will be completing a strep titers test as soon as he is well. When we last visited his DAN (Defeat Autism Now) doctor, he felt strongly that Gabe's frequent verbal stimming is related to strep. This doctor has ideas on how to best treat it and we are very anxious to begin this protocol. It's difficult for me to let my guard down long enough to get my hopes up about anything, so I won't get too excited just yet that his treatment plan will lessen the verbal stimming or any of Gabe's other related issues. It would be wonderful, though, should we be able to successfully treat the chronic strep and see improvements!

We are also seriously considering removing Gabe's tonsils and adenoids. We will meet with an ENT soon to discuss this part of the treatment plan. We have been told that removing Gabe's adenoids could help with his sleep issues, but again, I refuse to get my hopes up because the disappointment in this area (sleep) would be far too great. Yet, should we see improvements in his diagnosis of severe insomnia, I can't imagine what a substantial role this would play in the quality of our lives.

Autism is such a complex, mysterious puzzle with so many pieces to put together. If we can treat this one piece and begin to heal my sick boy, that would be huge! If we could find answers to another piece of the puzzle, involving his persistent insomnia, that would be just as significant! Despite my refusal to raise my hopes and get excited about something that may not happen (can you tell I have been burned a few times?), I will pursue these possibilities and pray God's will as I continue to search for answers... more pieces to fit into the puzzle of our lives.

Sunday, February 21, 2010


"Laughter is the shock absorber that eases the blows of life."

The sermon in church this morning was about laughter.  I can't remember a single other time in my church attending history that I heard a sermon on laughter and this one couldn't have been more timely.  (Those of you who read my previous post will understand why.)  

The preacher began by giving several definitions of laughter, which included:

"An audible expression or appearance of happiness, or an inward feeling of joy."
"The manifestation of mirth, amusement, and joy"

When she finished reading off these definitions, my husband turned to me and I knew exactly what he was going to say, "That is also the definition of Gabe!"  He couldn't be more right.  We are truly blessed that despite (or perhaps because of) his diagnosis of Autism, Gabe is continuously filled with joy and happiness.  He laughs often and his laughter is truly "a smile that bursts" (quoted from Mary H. Waldrip).  

I take heart in the fact that while my son may struggle to communicate with speech, he is fluent in the universal human language of laughter.  If you have been blessed to experience Gabe's joyful laughter then you have witnessed the smile start forming on his lips that then spreads to his beautiful, bright, brown eyes.  Yes, you can literally see laughter in Gabe's eyes.  Sweet giggles soon follow and on many occasions, his happy giggling turns into hearty laughter that is truly  infectious.  "But a good laugh bursts forth from the soul, Overflows, and bubbles all around" (quote from Carolyn Birmingham).  I praise God that this is a daily blessing and not a rarity in our home.  In the profile section of this blog, I wrote, "Since receiving Gabe's diagnosis of Autism, we have clung to humor and sarcasm as coping mechanisms.  We believe firmly in the old adage, 'Sometime you have to laugh to keep from crying.'  Laughter has proven to be our best medicine time and again, even when the humor turns dark."  The humor has indeed turned dark at times when we have laughed about something that very few of our friends and even family members could possibly find funny.  The only other choice we have is to cry, so I am thankful that most days we choose laughter.  

Laughter has literally served as a shock absorber in our daily life, especially in our marriage.  On a particularly challenging day, when our nerves are shot and we are emotionally drained, don't be surprised to find Bruno and I having a good chuckle over the almost "too crazy to be true" events of our day.  The fact that we can laugh about these seemingly tragic occurrences throughout our day, instead of popping pills or drinking the pain and stress away is proof that laughter very well may be the best medicine (and without side effects)!  

To hear this sermon today, after I poured out my heart here just a few days ago is just a little too coincidental, don't you think?  Was Divine Intervention at play here?  I truly believe that God has a sense of humor and I think He may have been reminding those in attendance of this particular service that there are times when we need to remember to cast our cares on Him and then sit down and have a good laugh... a good, side splitting laugh.  

Friday, February 19, 2010

Just one of "those" days...

Today was Gabe's Valentine's Party (rescheduled from last week's blizzard).  I was always excited about class parties when Gabe was in PPCD because it involved his preschool classmates only and his class was made up of children with a variety of special needs.  I felt "safe" there with other children that had their own unique set of challenges and parents who understood my own son's differences.  It was a safe place for both of us.  Things are very different this year in Kindergarten.  Even though Gabe spends a large part of his day in a specialized classroom that resembles the make up of his PPCD classroom, his class parties are with his general education class.  

I was very nervous when I attended the Winter party in December.  What would I walk into?  Do the kids like Gabe or laugh at him?  How will the parents react to Gabe?  Will I have to explain to everyone about his special needs or will it be on of "those" days where it is perfectly clear through his behaviors?  Will my heart be able to stand seeing my precious boy amongst his typical peers?  (you know, that moment when the blinders are ripped off and the gap between his developmental age and theirs becomes glaringly obvious)  

I was pleasantly surprised that the Winter Party went well!  Thankfully, there was too much chaos for Gabe's behaviors and verbal stimming to be highlighted.  I didn't run into that moment when I felt I had to explain "the situation" to any of the parents.  However the best part was the reaction of several of the other students to Gabe.  Gabe paid no attention to any of the activities or craft projects and instead did his "thing."  He pulled out several bins of magnetic "sight words" and found magnetic surfaces throughout the classroom and lined up all of the words.  At first, I debated whether I should stop him immediately in order to try to "appear normal," but then I decided to let him do his thing and at least be a part of the party as opposed to the other option of leaving early due to a severe meltdown.  I was shocked when several boys approached him and asked him if they could help him read the words.  After a few minutes of hearing Gabe name every single word (even quite a few that they did not know), they changed from helping him read to helping him take down the words and find new bins.  They were interacting with Gabe and he was tolerating them, so it was a HUGE victory for me!  When the party was over, his classmates lined up and left to go to art.  I had to take Gabe back to his LIFT class and so we waited for the others to leave first.  My heart melted when several of the students said, "Bye, Gabe!"  I left on a high.  I was so excited to see the children acknowledging my sweet boy (even if he seemed completely oblivious).  

Well, that was not how things went today.  Today at the Valentine's party, the children didn't acknowledge Gabe for the most part, but he certainly did not pay attention to them either.  He was completely obsessed with his candy and goody bags and it was futile to attempt to get him involved  in anything else.  After a very short time, he became anxious and was experiencing severe sound sensitivity so we returned to his LIFT class.  

I decided to hang around and have lunch in the cafeteria where Gabe continued to ignore everyone around him while the other students cut up with one another, laughed and had a good time.  I walked with Gabe to the lunch line to buy a drink and Gabe kept saying, "Loud! Loud!"  The boy in front of us in line ignored Gabe and looked directly at me and said, "Why is he saying that so much and why is he acting like that?"  A very large, sharp knife went straight into my heart.  I kept a smile on my face, despite the aching inside and cheerfully explained Gabe's sound sensitivity.  The same boy then looked at Gabe and said, "Hey!  Stop eating the juice carton!"  The knife dug in a little deeper and I somehow kept a smile on my face, but I was indeed wounded.  Then  the boys in front of Gabe started hitting each other playfully and laughing.  Gabe noticed this and started laughing and got closer to the group of boys.  He then grabbed onto the same boy that was just yelling at him to stop eating the juice carton and cuddled up to this boy.  Boys his age do not "cuddle" with one another and certainly do not understand a child their same age doing so with them.  It's not "normal."  I have always boasted about how blessed I am that Gabe has always been so affectionate and loved to cuddle with me.  It has always been a great bonding experience for me since I have yet to have a real conversation with my son, but he always makes my heart smile when  he jumps into my lap and wraps those sweet arms around me!  In this moment in the lunch line, he was happy and excited around these other little boys and he reacted in the only way he knows how... hug them tightly and snuggle in real close.  My heart no longer had stab wounds because by this time it was completely broken.  

Lunch was winding down, but since it is Friday, we still have time for one more thing... ice cream!  It's ice cream day!  Hooray!  (sarcasm)  My son is on a special diet that we believe strongly in since it was the piece of the puzzle that brought forth language!  My son went from a few one word demands to greatly increasing his vocabulary and even stringing together three word sentences once we took wheat and dairy out of his diet.  This "special" diet has not been easy on anyone, but since it coincided with some dramatic gains, we refuse to give into convenience and drop the diet.  So I escort Gabe to the ice cream line and when it is our turn, I ask the mom in charge if the "ice cream treat" has dairy.  She responds that she does not know.  I then ask for a regular Popsicle since I know that they are dairy free and she responds that this is the only option they offer the Kindergartners. I politely explained that Gabe had a dairy allergy and would need an alternative (which I KNOW they have).  She then responds, "Well if we give him that, then the other students may also want something different."  She looked at me like she couldn't believe I would dare do that to the other poor Kindergartners.  I have CLEARLY explained that my son can not have dairy.  Is she seriously asking my son to be the one to sit and watch the others enjoy their ice cream while he once again goes without?  I wanted to scream back at her, "Do you think maybe MY child wants what the other kids have just once or how about every single day?  He would LOVE to be able to eat whatever he wants like them, be able to communicate and talk like them, not have hours of therapy a day and maybe attend little league and soccer practice like them!?!"  This is what I wanted to scream at this lady, but I didn't.  I had a literal "come to Jesus moment" within myself and silently repeated, "Forgive her for she knows not what she does."  I then simply responded, "My child is allergic to dairy and will need an alternative, even if that means I need to pay more."  She finally complied.  

What a day!  These are the hard days.  The days when I stop riding the high of all of the great progress we have seen recently and instead find myself reeling from the sharp slap in the face by reality.  I am not diminishing the awesome progress we have seen lately, just seeing that despite these gains, we are light years from where I want to be at this moment.  I am sad for my baby boy.  Who am I kidding?  I am no martyr... I am sad for me!  My heart is weary this evening, but I know that when I am blessed tomorrow with my son's sweet, tight, joyful hugs, I will find a fresh perspective.  He is my inspiration.  He doesn't ever wallow in pity and he doesn't judge others by their differences.  He instead embraces life with pure, innocent, infectious joy that I wish we could all experience.  

Thursday, February 18, 2010

Ramblings from a bored mother of a sick child...

Gabe is still not feeling well.  He has a bad case of tonsillitis at the moment.  This is following a nasty stomach bug, then RSV, followed by a viral or bacterial infection that began about 9 days ago and is still hurting my sweet boy.  My mom and I were talking yesterday about how sick he has been since the beginning of the new year and I honestly wonder if he has missed more days of school than he has attended this semester!?!  His teacher has been more than understanding and was quick to point out a HUGE positive in his most recent bout of tonsillitis... he told her that his throat hurt!  This IS something to be excited about, even if he is suffering... poor little guy.

This long stretch of illnesses and constant cancellations has made me realize just how busy Gabe stays between school and therapy each day.  Each day after school he has some sort of intense therapy.  We have an in-home ABA team, as well as an in-home Speech Therapist.  (A few weeks ago we took a break from Occupational Therapy and hope to start that back up soon.)  These amazing ladies come to our home to work with Gabe.  I used to drive across town on a daily basis and now I feel so spoiled that I have no drive time currently for all of these therapies!  Alleluia!  

Gabe is such a trooper in enduring school all day and then working very hard all afternoon all week long.  However, the hard work is definitely paying off!  He is flying through goals in both programs (ABA and ST) and everyone is seeing the progress.  Not too long ago, we had a child with no tolerance for hearing the word "no," throwing constant tantrums because he lacked the language to communicate even his most basic wants and needs and wasn't able to follow even basic directions.  My how things have changed!  We still have a LONG road ahead of us, but it's nice to reflect on how well he is doing overall.  I am sure that our good days might still be someone else's "bad" days, but it's all perspective.  

Gabe's biggest strength at the moment is reading.  He is above grade level in reading skills and it's something he enjoys.  Yesterday at the doctor's office, Gabe was flipping through a book that he found interesting while the doctor examined his ears and throat.  He read every word on one of the pages out loud and the doctor looked shocked!  She asked me how old he was and then said her own son was the same age and no where near reading at Gabe's level.  This compliment made me feel good because for once, my son was not years behind his typical peers in something!  I can see where both school and ABA have been HUGE in helping him take off in this area.  I am thankful for a teacher who knows when to adjust goals to allow him to continue to learn and improve his reading skills rather than stick to what's on paper out of convenience. I am also thankful for an awesome in-home team that recognizes how reading skills can directly improve social skills and are always thinking of ways to use his strengths to help build up his weaknesses.  These ladies ROCK!!!

I will now bring this rambling post from a bored mother of a sick child to an end.  Oh wait!  One last thing!  This is big!  The reason I was able to sit down and type anything at all was due to the fact that Gabe is tolerating TV shows!  He sits with his hands clasped over his ears in case there are any sudden "loud" sounds, but he is watching and even enjoying it!  He is smiling and giving the occasional "excited hand flap" (well, when his hands aren't covering his ears).  Hooray!  One small step for Gabe, one GIANT step for mommy's sanity and free time!  

Monday, February 15, 2010

The Waiting is the Hardest Part

Gabe climbed into my lap this morning, looked right in my eyes and flashed that heart-stopping grin of his and said, "Mommy!" I looked back at him and cheerfully said, "Gabe!" He giggled and repeated, "Mommy" and this turned into an exchange that he found quite comical for some reason.  He continued to giggle and beam up at me as he waited for me to respond each time he said, "Mommy."  This was such a sweet and special moment for so many reasons...  

The precious eye contact that used to seem physically painful for him to endure was now a part of the "game" he created.   

His sweet little voice, which is the most beautiful sound in the world to my ears, called out my NAME!  I am reminded of a time when we thought he might never talk. 

This was not a one-sided interaction as is the case often when trying to engage Gabe.  This was truly a "shared moment" and one that HE initiated.

Moments such as this are common for other parents to experience with their children in their toddler years and even earlier, but I had to wait much longer.  Every milestone we reach is well worth the wait, even though waiting is the hardest part.

The waiting is the hardest part
Every day you get one more yard
You take it on faith, you take it to the heart
The waiting is the hardest part
(Tom Petty)

Sunday, February 14, 2010

Happy Valentine's Day at "Taco Banana"

Personally, I am not a big fan of Valentine's Day, but it made for a very relaxing weekend for Bruno and I. We were able to attend a double feature and go to a nice dinner on Saturday while Gabe hung out with his grandparents. Even though we were attempting to take a "break" from all things Autism for the day, we still managed to select a movie with an unexpected Autism theme. We saw Dear John and there are two characters in the movie that are on the spectrum. Bruno and I both were moved to tears several times throughout the movie and not because of the love story, but instead because of the deeply personal connection to the Autism theme.  What a great movie selection for our "break" on Valentine's Day!  Next time, I will do a little more research.

Gabe left the sweetest message for Bruno on his cell phone on Sunday morning. (Gabe is still obsessed with phones and calling people and has already MEMORIZED Bruno's number!) Although heavily prompted by Neena, the message was still adorable! Gabe said, "Happy Valentine's Day, Daddy! I love you!" You could then hear Neena in the background say, "Do you want to call mommy next?" Gabe replied, "No!"

Unfortunately, our actual Valentine's Day consisted of taking Gabe to an after hours clinic because he is still sick! This is getting ridiculous. He has been sick almost nonstop since the new year began. I have been diligent in giving his vitamins and probiotics and yet he remains sick. I am disappointed that we have to give antibiotics since they tend to do a real number on Gabe's gut and increase all kinds of negative behaviors. I am ALSO very disappointed that this continued illness, along with 10 days of antibiotics will prolong the wait to get his testing done!!!

It was time for dinner when we left the clinic so we decided to make a quick stop for tacos (Gabe's new favorite meal). We asked Gabe where he wanted to eat and he replied, "Taco Banana!" We had a good laugh over that and took Gabe to eat a Valentine's meal at Taco Banana on our way home.

The above picture is of the sweet poster that Gabe made for us with the help of his Neena. It helped make up for the refusal of leaving me a sweet message like the one he left for Daddy. :)