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.

Laughter

"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."

and

"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.  

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.  

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!  

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)

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. :)

Gabe Phone Home

During this new "heightened awareness" that I have written about, Gabe has discovered the telephone.  Up until now, he has rarely shown any interest whatsoever in phones.  Then suddenly out of the blue, he has wanted to talk on the phone.  Well, maybe not so much "talk" since we know Gabe is not too conversational, but he listens intently to the person on the other side of the phone and even answers questions when asked.  He brought me the phone several times on Tuesday when he was home sick and said, "Call Daddy."  He even dialed the phone number himself as I called out the numbers.  He had to be heavily prompted, but he would say, "Hi, Daddy!"  He listened as Bruno talked to him and answered questions when asked.  It was very sweet!  What a great feeling for Bruno who has never experienced his son calling him at work as most fathers of (almost) six year-olds have.  

Gabe called Bruno last night while Bruno was driving home from a meeting.  Bruno was able to ask him what he wanted for dinner and Gabe replied, "tacos" (of course) and then told Bruno that he wanted TWO tacos!  Gabe placed his first "to go" order!   

"Pick a Piece!"

Gabe's teacher reported today that he has been much more aware of others this week at school and has been interacting more with peers.  She says she can tell that he enjoys others being around  him.  I have seen heightened awareness with Gabe at home.  He has been much more conversational with his father and I.  

Just a few minutes ago, Gabe ran up to me and looked me right in the eyes and said, "Pick a piece!"  I said, "A piece?  What kind of piece?"  He replied, "Puzzle!"  I then asked, "What kind of puzzle piece?"  He proudly stated, "pink" and then flashed the biggest smile and ran off.  I have no idea what in the world he was trying to share with me, but seeing that proud smile of accomplishment cross his face at the end of our "conversation" made me realize that this story about picking the pink puzzle piece meant something to him and I was so happy that he was able to share it with me.  

He has no idea how relevant his phrase "pick a piece" is to myself and Autism moms everywhere as we are trying to put the pieces of this complicated puzzle together every single day.  

Stinky Toots (part 2)

Several months ago, I blogged about Gabe's new found awareness of potty humor (see post titled, "Stinky Toots.") You may recall that I celebrated this as a milestone since potty humor is so socially appropriate in boys his age. Unfortunately, he didn't really take off with this new sense of humor and we haven't heard any new attempts at jokes... until yesterday!

Last night, Gabe was upstairs playing with "Rocky," his talking and dancing dump truck. (This fact alone is exciting because he rarely plays with toys appropriately OR entertains himself independently. So, hooray, Gabe!)  I went upstairs to check on him and smelled a not so pleasant odor as I approached him.  I said, "Gabe, did you toot?"  He responded, "Yes.  Excuse me." A few seconds passed and Gabe looked right at me with a mischievous grin on his face and said, "NO!  Rocky had a stinky toot!"  He then laughed hysterically!  

He told a joke! This is HUGE!  Those closest to Gabe have been seeing glimpses of his sense of humor for awhile now, but this was a real, concrete example of trying to tell a joke!  I love it! 

(Gabe is sitting next to "Rocky" in this picture.  Now you know who the guilty culprit was in his joke)  ;)

Verbal Stimming

"Chevy, Ikea, police, one, two, Madagascar, sound puzzle, no sound puzzle, sound puzzle, sound puzzle, sound puzzle, sound puzzle, sound puzzle, UPS, Starfall, no Starfall, 'ch' computer, no 'ch' computer, digraphs, computer, moving truck, dirty towel, 8 big rigs, one, two, no one two, Shea bun ponytail, bun, no bun, Jessica bun ponytail, jump, no jump, specials, specials, specials, work, no work, blue truck, blue truck, check it out, Chevy, LG, LG, LG, LG, LG, LG, Uniden, phone, phone, leaves, leaves, leaves, no windows, no windows, no windows, no windows, glass, big can, drop floor, no drop floor, ATT, blue car, no blue car, bus, bus, bus, bus, bus, bus, bus, bus, bus, bus, bus, bus, Tonka, no Tonka, wrecker, wrecker, wrecker, wrecker, wrecker, wrecker, wrecker, ATT, ATT, ATT..."

This, my friends, is what we like to call "verbal stimming."  These chains of rambling words and phrases are what Gabe says for lengthy periods of time.  These random (or not so random to him) words offer the rest of us a glimpse into what is going on in Gabe's overloaded mind.  

Bruno and I have a friend that is in a band.  This young man has Autism.  He is obviously very high functioning as he has been able to be so successful thus far in his life.  He attended UT, is engaged to be married, and plays bass in a band that has just signed with a major record label.  He gives us great hope as to what is possible in our own son's future!  He also is able to offer us insight into what is going through Gabe's mind as he sometimes rambles on and on with these lengthy chains of disjointed words.  Our friend says that when he was younger, around Gabe's age, his brain felt like electricity as thoughts raced through at such a rapid pace that nothing made sense.  He often felt exhausted from being unable to slow his brain down.  He says that until he was introduced to music, specifically playing a musical instrument, at the age of 6, nothing made sense to him and he was unable to communicate with others.  

I appreciate our friend's explanation of what it felt like at Gabe's age to have these racing thoughts.  It helps me to better understand how my son must feel and I hurt for him.  I am not sure that music will be Gabe's outlet like it was for our friend, but Gabe does receive music therapy from his school and we are seriously considering giving Gabe music lessons of some sort in the near future.  

We have received advice from several of Gabe's therapists on how to try to redirect his ramblings into more functional language.  We do attempt this often, but his stimming occurs so frequently that it is nearly impossible to do this every time.  Also, I think we frustrate him when we redirect him and at times my "mommy instinct" tells me this is not the correct approach.  Our new DAN doctor heard Gabe's verbal stimming when we recently had our initial evaluation and he immediately wondered about a strep/PANDAS connection.  (For those unfamiliar with PANDAS, there is a link to better explain it in the sidebar of this blog.)  If testing shows that this in fact may be a possibility for Gabe, there are treatment options available to possibly help lessen the verbal stimming.  We should find this out in the next few weeks.  

For now, I will try to find the positives when I can and one huge positive is that not too long ago Gabe was not verbal enough to pair words with these racing thoughts.  Now that his language has improved so greatly, I at least have an idea of what he is going through and thinking about.  

Mentos???

Poor Gabe is sick again!  Just since the new year began, he has had a nasty stomach virus, followed by RSV and now another virus that is causing an inflamed, sore throat and low grade fever.  I would have never known he was sick with this most recent illness if not for some new odd behaviors he has been exhibiting.  He has been making new sounds, almost like gagging noises and has also been clearing his throat so often that I thought it was possibly becoming a new "stim."  (I am breathing a huge sigh of relief that I do not think this is the case!)  Several times in the past few days he cried out in pain while eating.  The most recent time he did this, I thought he was choking or had something stuck in his throat since he kept grabbing his throat and sobbing.  I hate not being able to just ask him what the heck is going on!  All I could get out of him was the word, "Mentos."  (It's OK to laugh, I did after the fact.)  He would open his mouth wide and push his finger back into his throat and then say, "Mentos!"  He was frantic and visibly upset as he did this.  My heart was breaking watching him carry on while I felt completely clueless and helpless.  His mention of the word "Mentos" brought to mind a time several months ago when he swallowed a piece of Mentos gum on accident and was very upset over this.  The only conclusion I could draw is that swallowing hurt and his way of conveying that to us was to refer back to the "Mentos" incident in which he swallowed something he didn't mean to???   We have asked him many times over the past few days if his throat hurts and his reply has always been, "no," but since he says "no" to almost everything, I didn't know whether to believe his answer.  I wish daily for the gift of mind reading as it would make my life so much more simple (in regards to understanding both my son AND my husband)!  ;)

Gabe's Super Bowl & Taco Party!

A very special "conversation" that I had earlier this week with Gabe led to a family decision that we should have a Super Bowl party! (see previous post titled, "What Did You Do At School Today?" for details) We asked Gabe what we should have to eat during our Super Bowl party and he said, "tacos!"  So we prepared all week for our "Super Bowl and Taco" party.  Gabe seemed genuinely excited about this event.  We had a good laugh when my mom asked him who he wanted to win the game... the Colts or the Saints and he responded, "the tacos!"  I posted this on Facebook and found that quite a few people agreed with him.  

The big day finally arrived and Gabe seemed to enjoy helping me print off pictures of Saints logos and other paraphernalia for him to cut out and hang up around the house as decorations.  My parents arrived right before kick off, armed with an arrangement of Saints themed balloons that Gabe loved!  He was delighted to have both the balloons and his grandparents attending his party.  We ate tacos and cheered on the Saints to a sweet victory!  It's fun to do things every now and then that include Gabe and still feel "normal."  We had a great time!

I chopped off my hair!?!?!

I chopped off my hair!  It REALLY needed to be cut.  Gabe is obsessed with pony tails and has been telling me daily to put my hair in a pony tail.  I thought it was cute at first and just a part of his obsession, but I think even he was realizing that my hair was getting shaggy and looked better up.  :)  

I didn't have the intention of chopping so much of my hair off when I made the appointment, but decided to go for it once I was sitting in the chair!  Not only did I get it chopped, but the stylist also straightened it.  I wondered what Gabe would think about it since the finished product was drastically different  from my usaul "do" and since he is so obsessed with my hair, especially my bangs and pony tails for whatever reason.  

His face was hilarious when he first saw me!  He initially lost his smile and really seemed to study me for several seconds.  He then said, "straight" and flashed a smile.  Bruno asked him if mommy's hair was pretty and he said, "yes."  So, I guess he's OK with the change.  I am still adjusting.  :)

The Waiting Game

Other than following the GF/CF (gluten and casein free) diet and a few basic supplements for Gabe, we have not been pursuing a biomedical approach.  This is completely my fault.  We have dabbled with things here and there for the past few years and have seen several doctors that treat Autism through a biomedical approach, but I have never completely followed through with the recommendations that these doctors made.  Sleep deprivation, depression, stress, and not having a natural inclination to understanding science (i.e. just not smart enough) are a few of the factors that have inhibited my follow through.  However, despite these past inhibiting factors, I am now very motivated and excited to venture into the biomedical world and begin treating the possible digestive, immune, detoxification and biochemical disorders that plague many children with Autism and may also affect Gabe.  

I am super excited about a new DAN (Defeat Autism Now) doctor, Dr. Cavazos, that we met with this past week.  (No, we are not related to him, we just happen to share the same last name.)  During our initial consult with Dr. Cavazos, we decided to start with some testing to check for any food allergy triggers, vitamin and mineral deficiencies, gut dysbiosis (bad bacteria in the gut, including yeast), and strep titers.  We are choosing to check into these particular issues first based on symptoms that Gabe already exhibits.  I am anxious to get started, but we are waiting on a particular test that Dr. Cavazos was out of and had to order for us.  It should be arriving this week and then we will take Gabe to a lab to have blood drawn and send off the tests.  Now that I am FINALLY motivated to delve into this aspect of Gabe's treatment, it is difficult to wait patiently for the tests to be done and the results to be returned.  

I felt good after meeting with our new DAN doctor and feel like he will help us put a plan of action into place that will lead to some positive results.  I already feel very positive about the other things we are doing to help Gabe.  We have an incredible speech therapist, occupational therapist, and an in-home ABA team that are AMAZING!  Gabe is also in an incredible school program that is almost too good to be true.  He is mastering goals so quickly that we have to meet before his annual ARD to create new goals and objectives for him to work on.  His teachers, aides, and school therapists are all terrific.  I am hoping that by finding and treating the physical issues affecting Gabe, we will be helping him to excel in his progress and reach his absolute fullest potential.  I am hopeful and excited and anxiously awaiting the arrival of our final test so that we can begin!

Lemon Horns!

Gabe's WONDERFUL teacher, Miss Julie, shared a cute story with me today.  She said that yesterday she was playing with another student and held two cups (one red and one green) up to her head and called them "Christmas horns."  She didn't even realize that Gabe was paying attention to them, but apparently he was because he walked up to her today with two yellow cups held up to his own head and said, "Miss Julie, lemon horns!"  

I was so excited to hear this story!  So many positive things were occurring at once!  This was spontaneous on Gabe's part as opposed to some of the more rigid and ritualistic tendencies he often exhibits.  It was also creative!  He didn't use the SAME colored cups that Miss Julie had used and he came up with his own description of "lemon horns."  I was also touched that he said his teacher's name to get her attention.  We just began working on this skill in his home ABA program this past week and he picked up on it so quickly!  

One thing Autism has taught me is to take nothing for granted!  Even the simplest stories like this one are filled with things to be thankful for and celebrated!  Who would have known I would someday be so incredibly excited about "lemon horns?"  

Gabe reading :)

Gabe is reading a book that could have been written about a day in his life.  The book is titled, "No David!"  He identifies well with the main character, David.  :)

What did you do at school today?

Gabe has been in school since he turned 3 and each day after school I have asked him the same question, "What did you do at school today?"  For more than a year my question was always met with silence.  This is no surprise since answering questions is very difficult for Gabe, but then one day not too long ago he shocked me with a response!  When I asked what he did at school that day, he replied, "bathroom."  I was so surprised to hear him say anything that I felt the need to clarify, "You went to the bathroom at school today?" His reply was, "yes."  

Sure, it would have been nice to hear about the story they read in circle time or the art project he made or a recap of what a classmate said that made everyone giggle, but I will take "bathroom."  I will take ANY response.  It sure beats silence!  

Since then, I have received various one word responses to my daily question, including things like "art," "library," and "working."  I look forward to and cherish that one word that he chooses to sum up his school day!

Yesterday, I asked Gabe "the daily question" and this time he replied, "music/PE."  This was technically two words and he didn't stop there!  He went on to say, "math with Jessica (his aide), reading with Jessica, and news to you."  OH my goodness!  That's 11 words!  E-L-E-V-E-N words to tell me about his school day!  I then asked what he learned in News To You and he said, "Super Bowl!"  Sure enough, in his school folder was his News To You story about the Super Bowl.  

This was the closest that Gabe and I have ever come to having a conversation.  Having this meaningful back and forth with Gabe made me hunger for more!  I want to know what he thinks about school.  Does he like it?  Does he like his teachers?  Which subject is his favorite?  Why does he refuse to eat lunch at school?  What does he think about his classmates?  When he learned about the Super Bowl, did he pick a team that he wants to root for?  I long to know his thoughts, feelings, desires and opinions.  I am reminded weekly by at least one of his therapists or teachers of how bright he is.  The fact that he does not have a firm grasp on functional language should not fool any of us into thinking he doesn't have much to say.  He is very smart and it pains me to think about how much knowledge Gabe has stored inside, but is unable to communicate to the rest of us.  I recently read an article about a young man with Autism who said, "Being able to speak was like a release from the jail I was kept in."  I refuse to allow Autism to hold my son as a prisoner forever.  Daily we are knocking down the prison walls, with one word at a time.  I continue to look forward to our daily school recap and I remain hopeful that someday this will evolve into a real conversation and that day will be the best day of my life!