Sam

Matt and I were told about 3 years ago that we could not have any more children. We always talked about having 3 kids, but when Brody was diagnosed with autism, this really put the plans on the back burner. Now with more reasons to call it quits with children, we all but gave up hope we'd ever have our 3rd baby.

Fast forward to October 2014 and we received the extremely exciting news that we were finally expecting baby #3! To say we were excited would be an understatement. We felt rejuvenated as a family; not to mention rejuvenated in our marriage. Parents of children with autism are 3 times as likely to divorce than parents with typical kids - considering the divorce rate is 50%, this is a large number. But now we had our baby - and he was a BOY. Three crazy boys and they were ours. Is anything better?

As parents of a child with autism and now going on 5 years of experience with this disorder (or whatever it is) we knew the statistics of possibly having another child with special needs - we had a 15%+ chance of having a child with autism - and it went up to 26% because we were expecting a boy(a girl would have dropped us down to 8%, that is how gender linked this disorder is, these are Mayo Clinic numbers). We knew what we were getting into when the test results came back and we found out we were having a boy - if we were shying away from that possibility we would not have tried for or even attempted to try another child.

June 24, 2015 arrived and so did our Sammy. The day, the night, everything about his arrival was perfect. But immediately, and I mean immediately after Sam was born, I started screening him for autism. Now...sanity check here, you cannot tell if a newborn has autism or not. It's impossible. But when he was about 6 hours old I started checking for eye contact and his ability to scan objects.

I was testing to see if his eyes would follow my finger from right to left - it was insane...picture me, in a hospital bed, sitting with this tiny infant on my lap running my finger from right to left asking if he "saw it?!" One of my nurses, lovingly, told me to "get a grip."

We brought Sam home and eventually settled into a routine. When Sam was approximately 5 months old, and after countless "right to left" scanning experiments and paranoia about eye contact, I made an appointment with a pediatric neurologist.

Brody's neurologist no longer accepts new patients, so I made an appointment with his partner, Dr. Denis Altman in St. Louis.

The day of the appointment arrived; we both cleared our schedules and drove to Mercy Hospital. We brought our Sammy into the waiting room and I refused to take the stroller because I wanted to carry him. I was bracing myself for terrible news,  maybe he has it? Maybe the stats are right and now Sammy has autism? It will be ok....

We sat and sat and waited for what seemed like forever, but it was maybe 20-30 minutes; Dr. Altman was running behind...that's cool..."he's a neurologist, he could be in surgery." So, no biggie.

Dr. Altman eventually opened the door to the waiting room and yelled with a bellowing voice,

"Welcome Bolands! Let's see the baby!" Dr. Altman opened the door for us and immediately grabbed Sam from my arms.

We walked into his examination room, and with Sam in his arms, he shut to door, and looked right at us,

"I know why you are here. And your baby is fine."

The relief swept over bodies like a tidal wave and we burst into tears.

Dr. Altman was watching us in the waiting room for the entire 20-30 minutes - he saw how Sam was interacting with us and smiling, not to mention he looked right at us when we spoke to each other. He said he could tell from the moment we walked into the waiting room that he did not show signs of autism or any other disorder at this time. He also said read Brody's records and understood why we were coming to see him. At no point did he tell us we were crazy for bringing a 5 month old to his office for an autism check-up/screen.

He spent the next 40 minutes or so testing his eye contact, his awareness and early joint attention habits (so, joint attention is when you give your kid an ice cream cone, a BIG one, and they look at you first before eating it...yeah...it's that vague and that minor, but it means so much in development. And it's not just when they eat ice cream, it's for anything, really...they check with your for a connection on most anything).Dr. Altman went through some of the milestones we should be on the lookout for in the coming months.

Sam had his 15 month check up today and so far, he is thriving. I realize at 15 months Brody was thriving, too except for his speech.

I don't think a day will pass, especially in the coming months up until age 2, that I won't second guess Sam's development. He pointed at our new bird Ne-Yo today in the kitchen, then looked right at me...and I almost lost it; Brody hasn't pointed at an object for almost 7 years. Little milestones mean so much in our house...everything from putting on shoes to using a fork to making eye contact during a conversation, it is all so valuable. And it's something many take for granted...heck, when Destin was a baby I took it for granted, too.

The moral of this little story is...despite the stress and chaos of lives with children, and it is very stressful, a child really is a gift. A snotty, loud, messy, smelly, wonderful gift. Sam is such a precious little bit of joy to our family and we know he is a gift to Brody, and to Destin. He is exactly what we needed, and when we needed it.  He's the most valuable gift we could give our other children - a best friend for life. And we will always be grateful for our Sammer Bammers.

Brody's Trip to Walgreens A.K.A. Is 9AM Too Early for Tequila?

Now, this may sound like an incredibly boring post. How many times does a mom go to Walgreens or grocery shopping with her kids? Daily, right? A trip to Walgreens is not that easy when you have a nonverbal autistic son and a 13 month old; it can get tricky. Here is a breakdown of our last visit; think of it as a snapshot into our world with Brody:

It was 9:30AM last Saturday. Matt and Destin were out of town camping/floating in Lesterville, MO. After getting all of the kids ready for a big day of parties and swimming, I noticed we were out of several things in the house: carpet cleaner, Swiffer refills, paper towels…and I had to pick up a photo order at Walgreens. On any typical day, I’d just push this all off until later when I could go alone without Brody, but this kid needs to be out and about. He needs to get out and experience the day-to-day…so, I decided to throw them in the car, with our supplies for the day, and head out to Walgreens.

While he in the car, he took off his pants, socks and shoes.

Once we got to the parking lot, I grabbed an abandon grocery cart by the car and then wrestled Sam out of the carseat (he was chiming away with “DADADADADDDAAADADA!” all the while) and then plopped him the cart, and then got Brody ready for the store, put his shoes on and other clothing, (as he takes them off all. the.time.). A nice older man who saw my shit-show enter the store said, (and I hear this a lot),

“My, you have your hands full!”

Thanks buddy.

So, remarkably, we entered the store, and hardly anyone was there! Thank GOD! It was a quiet morning at the ‘ol Walgreens. We made it to all of the necessary aisles…and my secret weapon was the cart. I just asked Brody to push Sam in the car from aisle to aisle….success!

The plan of pushing the cart worked; Brody was occupied and happy for about 2 aisles or more. And he even grabbed the items from the shelf and put them in the cart. And he threw in some of his favorites, too (juice boxes, candy, popsicles).

But next it’s time for…checkout. This is where my seemingly “normal” outings go to hell in a handbasket.

My crew rolled up to the checkout, and a nice lady, who looked kinda like Dorothy from Golden Girls, was at the counter with her coupons explaining she needed 50 cents off of her toilet paper – she was showing her army of coupons to the cashier who looked a lot like Mr. Roper from Three’s Company. Brody started to scream a little with impatience….the kid had places to go and people to see…then Sam started in with “DADADADADADADA!”…yeah, we were that family.

My secret weapon this time?

As I was sweating, I said, “Brody, let’s put all of the stuff on the checkout counter! Take it from the…no….not there…from the cart. No Mentos, Brody!” After some screams and squeals, he was ok with it.

Dorothy from Golden Girls managed to get her discount, and she left. I was about to hand her 50 cents for her troubles…but now it was our turn.

Mr. Roper scanned our items quickly, and started making small talk. He asked a few questions, as most people do,

“So, is he autistic?” (Actually he said, “she” but whatever…)

I explained that he was and nonverbal…he asked a couple more questions and mentioned his sister worked with special needs kids for 30 years.

“Well, they have to get out, ya know? And you’re a good mom for bringing him with you,” he said, as he packed our bags.

“Thanks, I am trying.”

The fun wasn’t over yet…we still needed the photos…this time, I brought out the big guns…bribery. I spoiled Brody with Mike N’ Ikes (or edible re-enforcers) and we paid for the pics…he only screamed once in that line…and jumped a ton but I can take the jumping. Sam watched in delight.

Then we busted a move! We flew through the doors and I heard,

“Nice seeing you!” from Mr. Roper.

While this was a very successful trip, as I hope you can tell, it’s still a lot of work. I typically break a sweat with each outing that involves Brody, (and also contemplate if I can drink tequila at 9AM or not) and I forgot to mention I always have an escape plan if things go south. We were also lucky the place wasn’t crowded and that the checkout line was short. If the store was crowded, if the line was long or Brody was too tired, we would have left immediately.

Outings are an area of Brody’s life that need work. I’d say this is the one area in which I lack the most experience or lack the most confidence – parks, most pools, family homes, beaches, etc. more private places are just fine. It’s a raging success. But public places like stores, well, that is Matt’s area of expertise. He just throws Brody in the car and takes him everywhere, even the liquor store! Or Lowes!

And you can forget plane rides, but that is another story. So, as he gets older, we’ll get him out more…and places that are outside his comfort zone…or is it my comfort zone? See…it’s both isn’t it? I have to get more comfortable with the chaos of being out with him, and his reaction to his surroundings. And he needs to work on getting more comfortable with functioning in these areas of the world.  I don’t care too much about the stares any more (which those do still hurt, but now I just ignore them) but I care about quality of life. How can he enjoy an event if he screams the whole time? And how can I? There is much work to be done in this area.

As you can see/read/experience, autism is SUCH a journey. And it’s an exercise in patience, sanity, and courage. I just gotta do it. And I will…the next time we need more Pledge.

Brody and Wandering

Brody and Wandering

When they say it just takes a second, they mean it. It does only take a second for your life to change. And no this is not a post about the terrible alligator incident at Disney or the gorilla incident. It’s about wandering in the world of autism.

Our family has experienced wandering in one of the most wonderful of settings ….the beach, in Mexico. This experience caught us off guard and we haven’t been the same since – it changed everything. Everything.

A couple years ago, when Brody was 5, we decided to take a family trip to Riviera Maya, Mexico. We chose a very family-friendly all-inclusive resort. It had an awesome kid’s pool, baby pools, slides, a huge beach area with tons of chairs/cabanas, and a kids club. Our kids are beach bums, and so are we.

When we arrived to the resort, our room wasn’t ready yet so we changed into our swimsuits and headed– more like ran – to the beach.

We were so excited to be in Mexico with the kids! I covered the kids in sunscreen and immediately the boys ran into the ocean, with Matt and I tagging along behind. Destin was all over it. Brody was running happily along the beach. I was running along the beach alongside him. Matt headed off to make an appointment for a massage so I stayed back with the boys. After running, I walked over to a hammock about 10 yards from Brody who was in the sand ahead of me. Destin came over to me, grabbed the hammock next to me, and started chatting away. I turned my head from Brody, who was in the sand playing and looked at Destin as he asked me a question about the cabanas.

 

(pic of the beach area - wandering happens everywhere...)

 

I turned back to the spot where Brody was playing, literally 10 seconds went by, and he was gone. So I walked up the beach, Destin in hand, and looked to see if he ran further up. No Brody.

I walked down to the other side of the beach area, still no Brody.

I asked several families at the beach if they had seen my baby, a little tan boy with orphan Annie curls wearing a blue and white pair of swim trunks. And they had not seen him.

I walked up and down the cabanas, scoured the sandcastles and kids areas in the beach, no Brody anywhere. By this time, 10 minutes had gone by and I was very worried. Matt came back to the beach and I told him what happened. He started panicking as well as we ran up and down the beach yelling his name.

20 minutes went by, no Brody.

We all 3 started crying ….Destin was screaming. The lifeguards started entering the water to look for him. I continued to run up and down the beach looking for any sign of him. The feeling of terror swept over our family. We were paralyzed.

“Maybe he drowned!” I screamed. One of the lifeguards made the sign of the cross.  I screamed in tears. Now I was screaming his name, literally in hysterics. I thought of Natalie Halloway and other missing children. I thought of seeing his swim trunks wash up on the shore. I thought of how I would be returning home on a plane without my child, and how I could not go on living if he was gone – Matt was also completely melting down. He was running all over the beach…he ran into the water, searching.

30 minutes went by, no Brody.

All of the sudden, a young woman in a bathing suit and sun hat tapped me on the shoulder from behind,

“Is this your baby?” She asked.

It was! It was Brody. He was soaking wet, his swim trunks were loose….he gave me a hug and a kiss. It was the most amazing moment of our lives –relief swept over our family like a tidal wave. He was safe. He was…smiling. I never felt joy like this in my life; it was like the day he was born.

I screamed and scooped him up, and bawled my eyes out. I kissed this woman, hugged her uncontrollably and asked her where she found him,

“He was in the baby pool behind the palm tree all along.”

 

(Me holding onto Brody at dinner - I pretty much held him for 4 days straight after this incident)

 

 

For the rest of the trip, Brody wore NEON colors. We also made him wear his Puddle Jumper every time we left the room so we could see him at all times. Remember, Brody is nonverbal. And he could not tell anyone who his parents were or his room number (we had no room yet anyway) – nothing.

I don’t have to tell you that if anything happened to Brody – if he would have been hurt or worse – I would have never forgiven myself for looking at Destin on the hammock. I would not be here today writing this if something happened to him. I would be in a grave.  It took me a month to talk about it without tearing up – and I deserve that pain. Destin is now obsessed with Brody’s safety – he constantly asks where he is and what he is doing – at all times. Destin does not deserve to feel this way – he is innocent.

So, my question is, are Matt and I negligent because this happened to us? Does all of the good parenting, the special needs parenting, go to waste because Brody wandered off on the beach? Are we bad parents? If he would have been hurt or killed, would Matt and I have deserved it? Would we be publicly shamed and ridiculed?

If you’re going with the court of public opinion, yes, and we would have deserved it. And we would be considered negligent parents. Heck, we’d most likely be charged with child endangerment.  If this story made the news in the U.S. then yes, Matt and I are the shittiest parents of the year… “Autistic Boy Wanders Off Beach While Mom Sits in Hammock…” I can see the headlines now on NBC.

I’d like to add that no one at any time at this resort scolded us about our parenting and not one person I’ve shared this story with told me I was a shitty mother. The resort personnel and other families were terrified with us and helped us. That does not cushion the guilt but it was appreciated.

Matt and I are enthusiastic parents – I’d go to say we’re damn good parents. But because of this wandering incident with Brody, we will always have inner turmoil. Because I turned my head for just “one second” I will never be the same – and I shouldn’t be. Matt isn’t either.

 

(Below a pic of Brody in NEON yellow, 2 days after the incident)

 

 

Autism and wandering is very, very real. Children in general and wandering is very real. We’re lucky because Brody is still at home with us; he made it out of this incident without injury or worse. But some families are not as lucky and they have to worry about their children escaping from their room or running down the street without warning.

Before this incident, I was pretty judgmental about the parenting skills of others – and now, unless you’re abusing your child or publicly humiliating them – I get it; we all do what we need to do to survive in this child raising gig. If that means you stick close to home or buy a leash for your two year old, so be it. Who am I to judge? I’m not perfect. And I almost paid the ultimate price for it, my little boy. And so does any mom who finds herself in the same spot – loses a child in a grocery store or amusement park (how many of us remember going to the grocery store and losing a parent?) And you now know one pretty awesome set of parents whose son wandered off a beach. It’s terrifying.

So what I am trying to say, after all of these paragraphs, is Brody should have NEVER gotten away – but I am not a shitty mom because he wandered.  Matt is not a shitty dad because he made an appointment for a massage on vacation. Not a day goes by that I don’t cry in my car about this incident or Matt relives that afternoon. And not a night goes by that I don’t think about what could have happened.  It changed us forever. It changed everything – everything. It changed how I raise my children, it change my marriage, how I see the world, how we as parents protect those who cannot protect themselves. It does only take a second.

 

 

 

Expectations and parenting and special needs parenting…?

 

I feel very lucky that I have three unique children. I also know from the bottom of my heart that Brody not only made me a better person, but also made my family and marriage stronger. But there are days where I get intensely jealous of other parents who do not have our struggles…one of those struggles comes from having one typical child and one special needs child. Seems cut and dry, right? One has autism and one does not….I mean what is the big deal?

This jealously crept up again this week at parent-teacher conferences. And not during Brody’s conference….I sincerely look forward to Brody’s conferences because his teachers are our soul mates – but this was Destin’s. Destin’s expectations and Brody’s expectations could not be further apart or more different.

Destin is nuero-typical, but he definitely has quirks. He has some major maturity issues at school (forgetting things, forgetting assignments) and he can be very shy, painfully shy. He lacks some self-confidence. He also loathes reading fiction books – seems minor right? But when you’re required to read specific fiction books for a grade, this can be an issue.

Destin’s teacher walked me through all of the areas she felt he was struggling with. She explained he stopped the class the other day because he “wanted to read a book aloud to the class, etc.” She also explained he can be very immature…interrupts people, gets over-emotional about issues, and is really struggling with reading those fiction books.

I listened very carefully to everything she was saying. I took notes on how we can get him on track at home – for the maturity we can establish the allowance program a little better, we can take him to the library once a week to get more fiction books in the house, and we can work on those quirks, etc. I have a terrible memory – it really is awful. Destin inherited it. So, this is another area we need to address.

As she spoke about these issues in our meeting, I could not help think in my mind…

”Yeah… so what?”

Destin is doing great academically…he’s super shy and has maturity issues at school, forgets his homework from time to time, but….I mean…he’s not slamming his head into a desk or eloping around the room right? He is carrying his own lunch tray. He uses the restroom alone. He carries on conversations with others. He can READ and WRITE his own name! He can do long division. He is rockin’ social studies…and math. This is success in my book. Case closed. In my eyes, he’s made it! But…has he? Am I selling him short by not riding his ass more?

Should I be all over him about his grades and his reports? That seems…not productive? I’d rather be reading to him or talking to him about his day….or taking him to the Science Center or a movie…spending quality time with him…time he rarely gets due to the immense amount of attention Brody gets.

My sense of success and expectations with my typical child are completely warped because of Brody. Minor victories for Brody are so immensely important to our family…and this plays out with Destin, too. Our expectations for Brody are to enjoy life and be happy, learn life skills….and to completely re-direct your expectations for a typical child? Our expectations for Destin should be way higher, right? We should be pushing Ivy League and Bright Flight and a 33 ACT score? I have no doubt in my mind that he is intelligent enough to do all of those things…but I do not expect him to…you know…just be that way.

Are we hippies? Probably.

So, that is the current struggle going on in our house….expectations for Brody and expectations for Destin…different yes? Right? And nuero-typical parents have these issues, too….right? You might have one kiddo who is super creative so you expect them to love art. And your other kid is really good at math…you expect him or her to have an A in math right? It all seems so trivial…I mean your kids can talk, laugh, interact, enjoy life, swim, play games, etc. They have so much going for them!

Brody puts life in perspective for us. Not a day goes by that I do not ask myself…”yeah, but does that really matter?” How do you change this to then say “Yes it does?”

 

 

"I Think My Kid May Have Autism," Vaccines, and Other Hot Buttons

“I think my kid has autism,” vaccines, and other hot buttons.

I’ve had a number of moms reach out to me in the last few years asking me if I think their child may have autism. I’ve also been asked the typical “controversial” questions about an ASD diagnosis. The truth is, I cannot answer most of these with any academic medical degree or medical certainty, only what I have experienced, observed, researched and learned in my 7+ years of dealing with child developmental issues. But what I can do is give some advice as to what to look for within the ASD community and what to do about it – this is educated and super-experienced mom advice.  So, let’s start with the basics:

How old is your child?

This is a big one for a number of reasons. If your child is 12 months old their development has a different threshold than if your child is 18 months old. The main questions I have gotten from more than 3 neurologists has been:

-          At 12 months of age, does your child point to items they want?

-          At 12 months of age, does your child look at you when you call their name?

If your answer is yes, keep going. Ask your pediatrician for more “milestones.” What else should you be looking for? And keep an eye on his/her eye contact. Does his/her eyes light up when others are in the room? When people speak does he/she look intently like you are speaking to them? Does your baby raise his/her eyebrows with interest? Babies assume everyone is always talking to them.

This is stuff I never would have noticed (eyebrows, really?) before Brody came along. It is amazing how these little pieces all fit in development.

If your answer is no to the list above, it does not mean your kid is delayed or autistic. It could mean he/she is still young. But it would not hurt to ask your pediatrician for some advice. Maybe your baby needs a Baby Gym class? Or a play group? Or a new school? And keep talking to your baby like a psycho. You cannot talk to a baby or hold a baby too much (again more advice from like 3 doctors and none of whom are named Jenny McCarthy). And do not start Googling “signs of autism.” Just Breathe….

What does your pediatrician think? Do you trust them?

ONLY get medical advice from sources you trust. DO NOT get medical advice from chat rooms, websites, your friend who has a friend or conspiracy theory websites. If you have a pediatrician you trust, ask him/her for next steps if you think something is up. If this doctor starts ignoring you and states “this is nothing” get a second opinion and quickly leave their office. You are the parent and you know your kid the best.

A good pediatrician will refer you to an additional expert for speech or OT, or even a pediatric neurologist or developmental pediatrician (they have those!). Brody’s doctor referred us to a pediatric neurologist (who said he was fine but whatever… we went two 2 more). And we then enrolled him in special needs preschool; AKA the best decision we ever made.

A bad pediatrician will blow you off and say you are worrying about nothing. You need to exit the building when they do this to you.

 Is Gluten-Free all it is cracked up to be? Can this help my kid not be autistic-y?

Our family goes back and forth with this topic. I can only speak for Brody in this and from what his doctors say…you ready? 3 Out of 4 of his neurologists have said Gluten-free does nothing. If your child has a gluten allergy it is amazing. You WILL see progress if your child has an allergy, which they might have one.

Here is the skinny: eating healthy = healthy results. If you feed your kid crap, they will be miserable. Like we are miserable when we eat like crap. Now imagine not being able to say “I feel like crap.” That is bad, right? If you feed your child healthy food, they will perform better. That is all. That is it. So, you can argue Gluten-free is healthier…or you can just feed your kid healthy food in general. It is up to you. When Brody eats better, he IS better all around. Check out that allergy business, tho!

Some (if not most) ASD kids have issues with their diet. They are stuck on certain foods. Chances are if you eat chicken nuggets 7 days a week, you will have tummy issues. But ASD kids like to eat the same things. It provides comfort. Gluten (my theory based on our doctors only) helps with digestion in kids with ASD. Normal kids can say or express “I have a tummy ache. I need something to feel better.” While ASD kids cannot. An ASD kid on a gluten-free diet could have fewer tummy issues so they in turn perform better and make more progress – they are less distracted by their tummies.

By the way, the 4^th neurologist we asked about Gluten-free, who we LOVE, said,

 “Eh, it’s worth a shot. Why not?”

So, there you go.

If my kid has autism, did he/she get it because I got them vaccinated?

HUGE hot button issue and I get asked this about once a week. The Internet drives me nuts with this question.

So here is my personal story and then I’ll give you my theory:

Brody was diagnosed within the hot bed of autism awareness. So, I made his baby food from scratch, fed him only organic jarred baby food if I used it at all, I quit my job to work part time, and we also spaced out his vaccines. I talked to him all the time. I held him 24/7. We did all of the things we were told would “prevent” autism. And he is nonverbal, autistic with severe ADHD. Plus he is allergic to peanuts and has eczema!

My theory with autism is based on 3 parts:

1.)    The population has exploded and therefore more kids are being born and as a result, more vaccines are being administered. That is why we have a rise in autism and have a rise in vaccinations. MORE PEOPLE.

2.)    Awareness is through the roof right now for autism. Which is great. This leads to more diagnoses of the disorder.

3.)    There is a theory that Autism is a spectrum (duh) and other disorders are on this spectrum such as ADD, ADHD, Turrets Syndrome, and OCD. You could argue that the explosion of the ASD diagnosis is a result of these other disorders falling into the spectrum category.

Believe what you wish to believe with vaccines. Some feel vaccines are dangerous. I respect that opinion. I feel they are not. That is just my opinion. Just be sure to get your information from a credible source, not from Jenny McCarthy or Internet chat rooms or the guy at Walgreens.

Does my kid have Asperger’s because he loves trains (puzzles, cars, movies, bowling, etc)?

Probably not. But there is a “but…” does his or her love of trains (or silly string or cupcakes) prevent your child from forming relationships, learning, and/or functioning daily? That is a concern anyway. If their love turns into something that is interfering negatively on their lives, then step in, Asperger’s or not.

So, there you have it. I know I rambled on with this post. Take the info for what it is worth to you. I am not an MD. I cannot give medical advice. But I can give support to friends, fellow moms, dads, sisters, brothers, aunts, uncles and cousins who need it.

And never, ever forget - if your child is diagnosed with any disorder, it does get better. You do find a new "normal." And most importantly, you will be OK.

Next Blog – what about those siblings of autistic kids?