Turning the Page

(Disclaimer: the information I'm about to share is just our experience with our son, in his specific situation. Every doctor treats patients differently and has different theories, data and studies to back up their findings. This post is in no way proof of any cause of any developmental delay. It's merely our experience with our doctor and his advice.)

 As I'm sure you've read in my previous posts about Brody, you know that Matt and I are pretty selective about where we get our information from in regards to autism. I do not read books by Jenny McCarthy (although I LOVE her new show on satellite radio because she is an entertainer NOT a doctor) and I also have no interest in conspiracy theories about how food coloring causes Autism or that McDonald's gave Brody a speech delay. None of that nonsense interests us. Matt and I are not looking for someone or something to blame for Brody's autism.

I did, however, used to blame myself.  I've been down that road a hundred times and constantly felt like I gave Brody autism. I am his mother. It is my fault. Shame, shame, shame...why did you eat that cheeseburger when you were pregnant? Why did you go to work when you were sick? Why didn't you drink more water? On and on...

The first couple of weeks at school this year were very tough on Brody. They were tough on all of us. His beloved teacher who followed him from preschool to kindergarten left to join a non-profit organization for families with special needs. And the teacher who was hired to replace her quit after 4 days. There was a constant string of teachers coming in and out of the classroom, not to mention all new students in his class.

It was awful and this was probably the worst 3 weeks of our lives at home. Brody didn't know which way was up. I took almost 2 months off of work to deal with all of the stress (I work in Web Content Development and deal mainly with contractual work so I had some flexibility). Brody wasn't sleeping. Nothing made him happy. He started to injure himself and that was terrifying. He would ask for things via his iPad...we'd give him what he wanted, and he would scream. It was insanity. I didn't think I would make it. I thought our family would soon be reading about me in the paper..."Crazy Mom Holds Up Dairy Queen at GunPoint" or something...I was losing it. Our sweet Brody was gone and replaced with an angry, tired, aggressive and mad little boy.

All of our fears about autism bubbled to the surface for a scary and heart-wrenching month.

In the midst of all of this insanity, I called our pediatrician and took Brody to meet with her. I explained all of his symptoms. She suggested a few things including medication. I was extremely skiddish at first about medication...we didn't want Brody to be zapped into a zombie. She assured me that the medication she would prescribe would be gentle and would help him relax during school. Transitions are VERY hard on Brody (going from one task to another) and this medication would ease that stress. I trust our pediatrician and she's seen Brody since birth. And wow...did she make an excellent suggestion.

We also (slowly) started to remove some of the sugary snacks Brody was eating. We took away popsicles and replaced them with frozen fruit. We now serve Gluten free pizza, too. I'm not sure if it's the absence of sugar or other things, but it's working for him. He's at more of an even "keel."

A couple days after we saw our pediatrician, I also called Brody's neurologist and pleaded with his nurse to squeeze us in for an appointment. Brody's neurologist is rated #1 in the city of St. Louis...it takes about 2 months to get in for an appointment. After a few minutes on hold, his nurse said they would fit us in and four days later, we were in his waiting room.

This is where the story gets interesting...

We met with Brody's neurologist for an hour. He sat with us for the entire time and observed him, asked questions and he answered ALL of my questions...without a pause for a breath. Here's some of the stuff we covered:

Self Injury: this is by far the scariest part of autism and what frightens me about Brody's condition. Some kids with autism self injure out of frustration. They can't communicate so they hit themselves to express anger or fear....hey, I would if I couldn't speak. His doctor explained that once he self injures, he'll always self injure. It's part of his behavior now. So, we need to do everything in our power to make sure it doesn't escalate. This is our main priority with Brody...NO self injury. And we haven't seen ANY self injury (other than maybe a tap here or there, nothing serious) in four weeks.

Medication: Brody is on the perfect medication for his age group and diagnosis. Period. This was the right decision. His neurologist was pleased we started it. He said he couldn't have made a better suggestion...that felt great.

Causes: So...here's where it got VERY interesting. Towards the end of our appointment, I told Dr. Mantovani that I felt I  "did everything I could to make sure Brody would NOT be autistic..." I rattled off the facts that I made his baby food from scratch, that I spaced out his vaccines, that I avoided additives while I was pregnant...etc. And you know what he said?!

"That's because it was nothing you did." 

That's right. Brody does not have autism because of something we did or didn't do. He went on to explain:

"Brody was autistic before he was born. This is who he is. This was spontaneous especially since you have a nuero-typical son. We have the data that proves this...we know it is genetic. We know there is a gene that is suppressed in autistic children. And I suggest Brody have genetic testing."

My mind was blown. Now...knowing Brody's genetic cause of autism will change nothing. But, he will give us some insight especially if Destin gets married and has children...we should know if there is a genetic disorder involved. He went on to explain even more:

"Autism is a disorder that is typically accompanied by an overlying disorder...autism is a symptom of another condition."

We talked for another 20 minutes about genetic testing and what that entails. We'll most likely schedule testing after the holidays and see what we find out. I asked if he thought Brody fit into any of the typical categories of genetic causes of autism and he said he didn't. Brody has none of the typical facial or cranial features of any genetic developmental delay that he is aware of, but blood tests will tell him more. 

The appointment ended with me holding Brody and kissing him like crazy in front of the room of nurses and our neurologist. I told them that I still felt like Brody was "my baby" and I loved holding him...and how relieved I was that he was still loving and sweet.

"You're mothering the child you have," Dr. Mantovani said. Then he hit me with this:

"You are doing everything right."

As parents I think we always feel we could be doing more, and I am no exception to this. I am constantly thinking about what else I can do for Brody to help him be as successful as possible. Maybe if I just had more time, or a million dollars or maybe if I had more training in speech therapy...or maybe I could get a Ph.D in Child Development, then I could help him....and so on...

I cannot tell you the joy in my heart I felt when I heard those words..."You are doing everything right." Those words gave me the strength to keep pushing with every fiber to get Brody the best of everything. It was like our doctor knew what I needed to hear at that moment. And that we made it through those insane three weeks and came out on the other side.

The medication Brody was prescribed is changing his life. He is back to his old self...now it didn't happen overnight, but within a few days, he was smiling, laughing and talking. He now says mom every single day. And "bye bye" and "juice" and "help..." the list goes on. The self injury stopped immediately.

We have our boy back and everyone is smiling. And you know what? If it gets tough again, I know we'll be ok. Because we are doing everything right. 

A Letter to Brody on Autism Pride Day

Dear Brody,

I always knew one day you'd be able to read and here we are, and you are holding this letter and reading the words, probably out loud to us in the living room.

You're not a burden, Brody. We've all loved you from the moment we set eyes on you. And the day you were born was the most amazing day of our lives. I'll never forget holding you for the first time and refusing to put you down for the first month of your life. You're our sweet boy and cherished gift and always will be.

I know it's been hard for you. I know you see other kids talking and laughing, or maybe you don't. But you're just like them in our eyes. You are such a strong and proud little boy. We're so amazed by your strength every day. I watch you in your therapy classes and you're working so hard to say "no" and "cookie" and "orange." We know it's in there and the words just can't escape your lips. The extra hours in therapy or special classes do not mean that you are less of a kindergartener or less of a first grader. It just means you need some extra help that other kids don't need right now. But it won't be like this forever. You'll see.

Brody, you're the person all of wish we could be. You're a free spirit and no one can touch your energy or joy; in fact, when your dad and I look at you, we're at peace. We watch you in awe and just smile at the way you run through the house, jump on the trampoline, hug everything you see and tackle your brother to the floor. When you were first diagnosed, Brody, we were told you might never do these things. We were told you might never jump on two feet or talk or feed yourself. And here we are...again, you're reading.

You astound us every day.

Your brother, Destin, he gets jealous of you. He doesn't mean to and he doesn't hate you, ever. He wants in on your little world for a while and wants to be a part of it. I see you letting him in and opening that locked door just for a second. Keep opening it. He wants to be close to you, just like we do.

I can't wait for you to be able to read this letter. I want to sit with you, on the floor, (no matter how old you are) and read this to you, and then I want you to read it to me. You're the most goregous and loving child I've ever known and can't believe you chose me to be your mom. Your dad and I would travel to the ends of the earth to help you; we will do anything to make your life the best it can possibly be. Not a day goes by that I don't think about your life, your dreams, your future.

Brody, we love you. I know right now you may not understand those words when we speak them, but I know you feel them in your heart. And that's what matters.

The week before you were born I had a dream about you. You were 15 years old, and you sat down next to me and held my hand. You looked into my eyes and told me you were OK, and that everything was going to be fine and that you were happy. You hugged me and then left the room. And now here we are. And everything is OK. I hold onto that dream every day and think about what the future holds.

We're not going anywhere, Brody. We're all here for you and want to help you achieve your dreams. Whether you want to be a male model or a professional surfer or a writer, we're here to help make those dreams come true.

I love you, Buddy. Never forget that. You will never be alone.
Love, Mom

Autism Awareness

As I am sure many of you know, April was Autism Awareness Month. As a parent of a child with autism, I was overwhelmed with articles about Jenny McCarthy, causes of autism, Kristin Cavalleri, autism therapies, studies, etc. And really, is anyone more aware? Does anyone know one more fact about autism because they read an article on the Internet? These articles won't get anyone through the day-to-day of caring for a special needs child. Trust me I have done the legwork.

The truth is, we cannot control what others do or think about special needs kids. But we can control what we think as parents, how we treat Brody, and what therapies, treatments and causes we believe in. If you've read my Facebook posts about autism, you probably know I get my advice and medical direction from medical or professional experts. Period. No, I have not read any book by Jenny McCarthy. Matt and I stay away from sensationalized media (in regards to Autism...I am obssessed with In Touch and all of those crappy magazines!)...it took me 3 years to even read a book about autism that was not published by someone with a Ph.d. (and I am so happy I folded, it was really, really good...but from a standpoint of personal experience and compassion, not facts about causes or therapies).

So, in honor of autism awareness, I'd like to introduce Brody's team...these are the folks who give us our advice and awareness about Brody's care. And I'm sure not many people are aware of what it takes to care for a child on the spectrum or how many individuals work as a team to help a child.
Our family would be lost on Earth without them:

- Dr.John Mantovani: Dr. Mantovani diagnosed Brody with autism when he was 22 months old. He performed a 90 minute screening in his office, and reviewed several reports and profiles from Brody's speech pathologist. We visited Dr. Mantovani 3 times in 6 months to confirm the diagnosis. As soon as Brody was diagnosed, we asked Dr. Mantovani to evaluate Destin to make sure he was developing normally and Destin was found not to be on the spectrum. Dr. Mantovani is one of the most compassionate and loving people I have ever met. He was there for us during a very scary time and his staff was incredibly sweet to our family. I saw him in the grocery store a month ago and I blubberingly thanked him for his care...and cried. If you ever need a pediatric neurologist, he is your man. He was also voted #1 Pediatric Neurologist in St. Louis (by St. Louis Magazine).

- Dr. Dennis Altman: Dr. Altman is another physician in Dr. Mantovani's practice. We also had Dr. Altman perform a screening on Brody and on Destin to determine their status on the spectrum. And Brody again was diagnosed and Destin was found to be "normal..." (whatever that means!). Always, ALWAYS get a second opinion...we actually visitied 3 nuerologists for Brody's diagnosis.

- Dr. Sue Jagler: Brody's pediatrician...we seek her out for Brody's main health concerns...weight gain and eczema. Brody is very healthy, but he's so tiny. We typically visit her every 3-6 months to be sure he is gaining weight. She was the first physician to suggest Brody may be on the spectrum. He was 18 months old when she suggested we seek some therapy for him.

- Bryan Thorson, MSW: Bryan is our family's advocate and therapist. I visit Bryan on my own every 2 weeks and will occasionaly bring Destin, Brody and Matt. Bryan has worked with young adults on the spectrum for 17 years and he also gives wonderful advice about acceptance, love and care for children with special needs. He's our family's sounding board. Every time we see him, Brody jumps on his lap and gives him a kiss. He's been a Godsend to us...he's taken many late night worried calls from me and has always given great guidance.

- Maura Donahue: Maura is Brody's lead teacher in his kindergarten class. If you want to be blown away by an educator, watch Maura in the classroom. This woman has a fire in her I have never seen before in any professional of any kind...she is determined to see children succeed. She is tough but affectionate and funny. She has the best sense of humor and nothing surprises her...we all love her. I credit her for potty-training Brody and for his motor skill development.  Brody literally runs to her in the morning...wow, we are just so lucky to have her.

- Matt, Brody's para-professional: a para-professional is a full-time educator assigned to a special needs child. Brody has 1:1 care for an entire school day and Matt is his main man. When Brody was assigned to Henry school I made a special request for Brody to have a male teacher and Matt is just was the doctor ordered. He's loving and sweet but he also doesn't take much crap! He's tough, strong and the best big buddy to our guy.

- Monica Kaup: Monica is Brody's educational specialist with Parkway. She ensures Brody is getting the care he needs and is on track for success. We check in with her on an as needed basis and I see her in Brody's class just about every time I visit the school. She is another educator who will blow you away with her knowledge and compassion. I also credit her with Brody's progress and for just loving him so much. She held my hand on Brody's first day of preschool and hugged Matt and I when our first IEP finally wrapped back in 2012. She firsthand made sure his services were finalized in the school district and secured his placement...plus the hundreds of hours of therapy.

I know you can read a news article about the causes of autism, facts about autism, stats about autism, but you can't really read an article about what it takes to help a child with autism be the best they can be. But you can shake hands with a special needs person, or compliment a teacher or donate to a cause you believe in...that is awareness.

Awareness isn't knowing the facts or studying the numbers, it's knowing who to turn to, who you can trust to care for your child. Being aware is being humble. It's about being aware of who you are and how you treat others.

Before Brody was diagnosed with autism, I was extremely closed-minded and ignorant to the special needs community. In fact. I was terrfied of anyone with special needs. And now, I snuggle with a special needs baby every night and pray for his future and health. And would I do the same for your child? Yes. I would. And Matt would be right behind me.

We're not Saints...we're NOT perfect...we're just a mom and dad. And we won't stop accepting children for who they are...loving unconditionally or pushing like hell for Brody's wellbeing.

Accepting your children. That is awareness.

-

The Emotional Cutter

Here is a picture of Destin (blondie) and Brody (brunette). They are 8 and 5 years old, a second grader and a kindergartener. Since you are reading this blog post, you know that Brody was diagnosed with autism when he was 2 years old. Now he's 5...those are the facts.

This picture above was taken at the St. Louis Zoo last summer by the hippo tank. Brody was getting ready to step down off the observation deck and he almost fell, it was very wet. Destin grabbed him so he wouldn't fall. Then I had to snap a pic...what a smile and what a proud big bro. We had a blast that day; we got there right when the zoo opened and we just hopped around like crazy rabbits...one of the best days I've ever had with my guys. We will come back to this picture tidbits in a sec...

Over the last 3 years or so, as we've spent time in the autism community, I've come across more and more news articles about mothers and fathers (and other family members) abusing, neglecting, even killing their special needs children, and in most cases these children are not "children" per se, they are over age 18. But with their disorder(s) they are considered a younger cognitive age, and come with all of the stressors of a younger child and then some...and they are adult in size.

These parents are doing these horrible acts for a number of reasons...they are overwhlemed, over-stressed, strapped financially with no other resources (or so they think/feel) and feel there is no other option but to make their children pay an ultimate price. The life of special needs parents can be very isolating. I understand that completely. It is. And these parents/caregivers are brought to the edge of
sanity.

One article, for example, was about a mother who shot her 24 year old autistic son, then turned the gun on herself. This is isolation, mential illness, depression, exhaustion, anger, fear, rage all rolled into one act of extreme violence. This mother felt she had no other option. It makes my chest sink.

I've read countless others that are disgusting...everything from not putting an autistic child in a car seat because the father commented. "What's the point?" to much, much worse. (True story, a father actually said this in a statement when confronted about the abuse.)

There are days, like yesterday, where I read these articles for what seems like hours. Brody will be watching Toy Story, eating his oreos, happy as a clam, or playing with Destin on the floor, and I'll be hunched over my laptop or ipad reading these "things" like a lunatic. And at the end of every article, Matt is sitting right there next to me. Sometimes, he'll come over and turn off the computer. And the article will disappear. Last night he spoke up:

"Cassie....stop with the emotional cutting..." He immediately wanted to me fess up about what was really making me read these articles.

"Well, Brody won't be 5 forever..."

"Cassie...he is 5 NOW. Stop. Reading. The freakin articles. You are driving yourself insane"

That is true love.

I don't know why I subject myself to these articles and stories about horrible abuse in the special needs community. I don't know why I constantly gravitate to articles about special needs "kids" age 18 and over who are neglected. Maybe it's to feel better about the job we are doing? Maybe it's to understand the stress of other parents? Maybe it's to prepare me for what's ahead?

The reality in our household is, just as the picure shows above, it's full of 2 happy little boys. That's it. That's all. And reading these horrible articles won't change Brody into a 24 year old toddler or Destin into a neglected child.

But, turning off the computer or deleting "Autism Speaks" from my newsfeed won't change the fact that there are millsions of special needs families who need help. I desperately want to do something...if only we had a bigger house, we could invite all of these families here, even just to show them they're not alone. We could order pizza, pour some wine and just...talk. And let the kids play.

So, in closing...Brody won't be 5 forever, but he is 5 now. And I need to get back to him and put away the articles...at least for a while.

I'm Running for Room Mom. Endorsements Welcomed.

I decided to take today off of work and go to Brody and Destin's Valentine's Day parties at school.
It was a hectic day...I had a zillon errands to run, I still had to get treats for the parties and of course, I wanted everything to be as sweet and cute as possible. I would be meeting Brody's fellow classmates in his gen ed Kindergarten class, not to mention the moms. I tried on about 4 different outfits.

To say I was nervous would be an understatement. I literally had to take deep breaths as I walked down the halls of the elementary school and into Brody's kindergarten class.

I arrived just as the party started, armed with Valentine candies and fruit snacks.

The room was buzzing. All of the kids were sitting in their kiddie chairs, making crafts, cards and jewlry for the big day. It was loud, chaotic, hot...

Brody was sitting with his headphones on (headphones drowned out loud noise and calm him during the day and while in class) and his para-professional was helping him with his crafts. I ran over to his side and kissed him excessively...he returned the smooches (of course). He was covered in icing from the cupcakes and was all a buzz with a sugar rush. We were laughing, stringing beads on pipe cleaners...it was great doing something "normal" with him like making crafts with classmates. He squeaked and made is typical Brody noises. I'm so used to his quirks so I don't even notice his vocal outburts or ticks (like tapping his chin, snapping his fingers, tapping his forehead). He struggled with beading pipe cleaners and holding a pencil, but he tried so hard, like he always does. He got thru one of the crafts but was soon distracted.

In the midst of the loves, crafts and hugs, I got a glance of two other moms who were seated nearby with their children. Now I'm not sure if it's just because I am overly protective of Brody or sensitive to his needs/experiences, or if I'm just an emotional and sensitive person overall, but I saw shock in their eyes. Actual sadness even.

It took my breath away.

I could feel a lump start to form in my throat, but shut it down right there. I didn't want to tear up at my son's party. This was not about him anyway. He was having a blast. But I couldn't shake these "looks..."

Moms can be strange creatures. I can say this because I am one. We really put pressure on each other and I have no idea why; it's a waste of energy. The lead room mom was really something. She was intense and did not acknowledge Brody's existence, nor mine whatsoever, even after I introduced us. She reminded me of "Regina George" in the movie "Mean Girls." But it was worse because she was a mother of another kindergartener. She also ignored the other autistic little boy in the class. It was uncomfortable and very awkward. That little boy's mom did not attend the party, but I wished she would have so we could have buddied up.

I didn't confront her or the other moms. I wanted to. Part of me wanted to start a dialogue with one of them and ask if they had any questions (I've done this in shopping malls and grocery stores when I noticed people are staring)...

One mom at our table actually stared at us, held a gaze for a few moments, then actually moved from her seat to another table in the room. She took her child with her. It was the first time I actually felt like we were being watched in close quarters. I tried to be empathic. Before Brody was diagnosed, well before Brody was born, I also was skiddish around children with special needs. So, I can understand. But that doesn't make it easier to deal with when you're confronted with it straight, no chaser.

As the party went on, the games started. And the first game, a version of hot potato with a teddy bear, was perfect for Brody. He handed off the bear when it was his turn and he seemed to get along with the other little ones.

When he was "out" of the game, one of the little girls said, "Uh Oh Brody's out! Better luck next time, dude!" It was adorable.

Lead room mom, who I started to affectionately call "Queen Bee", continued with the final two games, which frankly weren't age appropriate. None of the kids could actually "do" the games. But whatever...by that time I was concentrating more on getting to know the kids in the class, ignoring the not-so-nice moms and chatting with his para-professional, (who should run for Sainthood by the way).

The party ended with the realization that the treats and Brody's classmate addressed Valentines we brought for the party,  would not be passed out. Apparently, Brody was in speech therapy when Valentines were handed out among the classmates. And there was simply, according to Queen Bee, "not enough time." I explained that I would leave the treats for the class so they could enjoy them later. I was taking my baby home so I could love on him, more...

I was proud of myself for not freaking out or going "crazy mom" on these folks. I really held it together and focused on what mattered, Brody. He was having fun, laughing, smiling, eating treats. He was oblivious to my stress and anxiety about the situation. One of the other moms (one of them) did actually start a conversation with us and asked about Brody's headphones. I explained how they helped him and she was very, very sweet.

Once the clock read 1:45, the party was over. Exactly on time. As I packed up Brody's stuff and put on his coat, I couldn't help but feel relieved that we were headed home.

Brody and I walked, hand in hand, towards the school's exit. He was smiling ear to ear, jumping, laughing. He was so happy...what a love bug. I caught a glimpse of Queen Bee as we left. She ingored us.

I am determined to make this not-so-great experience into a positive. Our IEP Meeting with Brody's teachers is scheduled this week and I'm looking forward to this conversation.

Guess what position I am applying for in Brody's first grade class next year? Yep, that's right.
Room Mom. I think these kids need some Harley Davidson Valentines.

But he doesn't look autistic....

If you've visited my Facebook page or my home for that matter, you'll see dozens (and I mean dozens) of pictures of my boys. I am an extremely proud mommy of her adorable boys. They're precious...I literally tear up when I show their pictures to friends, co-workers, the check-out chick at Dierbergs, everyone.
(This pic to the right is Brody at age 2, right when he was diagnosed...thanks Ryan Pendleton for the awesome pic).

Here is a pic of Destin when he was 5...he is now 8! Again, thanks Ryan!




Since Brody's communication is so limited, we rely on Brody's facial expressions, mannerisms and just his "looks" when we try to converse with him. And as you can see from his pictures....

Brody is goregous. (This pic below is from last year, daddy took it.)



Please don't read this and think, "This chick is just bragging and is conceited about her kid's looks..." that is not the case. He is legitimately a beautiful child and frankly, it's what keeps us going. We can look into Brody's eyes and see everything he is feeling. We see his frustration, joy, pride, sadness, depression...and again as I write this I'm getting teary-eyed.

There are several types of reactions I get from others when I share the news about Brody's diagnosis.
Sometimes people ignore that I even mentioned it...some will say, "Ohhhhh well I heard they are doing so much...." Then therapies will be discussed. I'll also get questions, "What do you think causes it?" But that is a whole other blog post.

One of the reactions I've recently gotten has been, "But he doesn't even look autistic...he's cute."

Here is Brody at 18 months, right when we started speech therapy and his therapist knew, "Something was up..." Does he look autistic? What does that even mean?




Now, I typically just nod and smile when I hear this statement. I realize that it's a difficult conversation. I mean, What on earth do you say???

I'd prefer this statement to, "I'm sorry." That is much worse. What are you sorry for? Look at Brody...he is happy, loved beyond belief and adorable. We're not sorry, don't you be.

I wonder what the "autistic" look is anyway? The majority of autistic children I've met on our journey have looked exactly like me when I was little or like my husband, or anyone else. You really can't tell until some of their behaviors show you the way and shine a light on what is happening.

The truth is, autistic children are exactly, and I mean exactly, like any other child. They get scared, they love Lightning McQueen and ice cream, they love playgrounds and movies, just like your child does. The only difference is, they see, hear and experience everything differently. They are in a foreign country 80% of the time and no one speaks their language. So, they have to adapt by relying on other behaviors like screaming, or signing or my favorite (and Brody's) kissing all.the.time.

So, the next time I hear, "But he doesn't look autistic..." I am again not going to say anything drastic or annoyed. I'm going to stick with my current script and say,

"He looks like Brody."


My fellas...I mean come on....adorable.

Here is Destin again...or Michael J. Fox...really. Handsome.




My kids are my kids. And that's more than enough for this crazy mommy.