Just Another Night.

This is not one of those “count your blessings” blog posts, so please keep reading! This is an honest take on new experiences in our autism journey with Brody. This is kinda long, but it was quite a night.

Our family is so diverse. We have Destin, our brainy child; he is obsessed with math, dinosaurs, NASCAR and soaks up new information like a sponge. Then we have Sam, the new baby. Sam will be our comic relief, Mr. Personality and is so far a silly, chubby, goofy mess!

Then there is Brody. Brody’s had a couple of really hard weeks and we can’t figure out why. He can’t get into a routine no matter how hard we try. One night he’ll want to eat dinner early, the next night late. If he can’t go outside he is a holy terror; he’ll throw things and dump out drinks in the sink. He’s sleeping is all over the place. He’s also been really vocal and screams if he doesn’t get his way immediately. It’s a tug of war in the mornings to get him ready for school. Some days, like today, he is just fine…but unpredictable. Some days he is inconsolable and I feel like a failure as his mom.

The St. Louis Arc is an organization here in the city designed to offer support to families with special needs adults and kids. Translation: it is a GODSEND. They have classes for moms, dads, special needs adults…they offer caregiving services and social events for everyone in the family. Destin started attending a special needs support group this week and he really loved it. It’s a bunch of little boys ages 7-12 who have brothers or sisters with special needs. I’ll come back to that in a bit…

On Wednesday night I took Destin to his first support group meeting. And while he was in his support group, I jumped into an impromptu parent workshop titled, “What Happens to Your Special Needs Child When You Die.”

Yeah…just for fun, right? Just what I needed. (sarcasm here…)

 It wasn’t exactly the uplifting evening I was hoping for, but it was either attend this meeting or drive 30 minutes back to Chesterfield and then drive 30 minutes again to Maryland Heights to get Destin. So I stayed for the “workshop.”

So, I sat at the back of the room and watched families file in the conference center. I was by far the youngest person there. But it’s never too late to plan for this stuff, right? I won’t get into the workshop itself too much. Besides, the most interesting part was not the workshop content. The most important part for me were the families in the room. I sat and just observed.

The woman, we’ll call her Lisa, who sat to the right of me had a daughter who was 26 years old with an IQ of about 60. Her daughter has a job at a local thrift store. She attends the dances and classes offered through the St.Louis Arc. Lisa is a single mom; she got divorced when her daughter was 6. So, she has been doing this on her own for 20 years. She has no other children. It was just Lisa taking her to school, attending her IEPs, helping her settle in at night, and walking her through those hard high school years. She did this all by herself without help from any family.

There was another woman who say to my left, we’ll call her Jan, who had a 16 year old daughter with Down Syndrome. She is also a single mom; she sat next to me eating a twinkie; that was her “dinner.” She had no time after work to cook a meal or stop for something better, she said. Jan brought her daughter with her and she stayed in the waiting room that was right off the conference center. Her daughter sat and listened to Sesame Street music videos while the workshop went on that night. The daughter was about 5 feet 2 inches tall and weighed about 200 pounds or so. She sang for a few of the videos, too.

As I looked around the room that night I saw more and more families…but didn’t hear their stories. There was an older couple that sat a few rows ahead of me. They brought their 20 something son with them. He sat the entire time; he stared at the lights. There was another mother, about 70 years old, with her 50 something special needs son. He had a hard time sitting still and needed to move to another room.

Lastly, the woman hosting the workshop told us her story. She has a son who is deaf, blind, and autistic. He also has several medical problems and wasn’t supposed to live past age 20; now he is 55. The woman was almost 80 years old and looked amazing.

So, while I did get a lot out of the content, I definitely got more out of watching the families in the room.

I kept wondering, of course, “Will this be me in 20 years, with my Brody?” I realize a lot could happen in that time; he could progress a ton. But still images of an older Brody crept into my head as I sat there. I was actually really proud of myself for not crying, as I typically do, when I’m around special needs adults. And it’s days like these that make me so thankful for my supportive husband, my Destin and my sweet baby Sammy. No matter what happens with Brody, I have all my boys.

The time came to pick up Mr. Destin from his support group. As I walked to his classroom, I could hear little boy giggles and goof off noises (pure music to my ears!). They weren’t quite finished yet, so I started a conversation with another mom waiting by the door; she was wearing a Cub Scout t-shirt, so I asked her about her guy…since Destin is a Webelo and all.

The mom, we’ll call her Linda, explained she has a 7 year old son in the support group. I told her about my Destin and his silliness…she told me about her son’s cub scouts. I assumed since he was in a support group that she had another child with autism. So, I asked about him or her.

“I have a 2 year old girl. She was born without half of her brain,” she said.

And then, to my heartbreak, she started crying in the hallway.

I held her hand and told her how proud she must be of her son; he is a great big brother. I felt as though I was saying all of the wrong things as she went on about how she finally “had her baby girl and now she is like…this.” She explained all of the things they do at home for her, and how she felt they had no family time. I tried to encourage her that with Brody, who is nonverbal, you do find a way. I tried to tell her that it gets better and it does work out. It’s a process. It’s a journey. I told her all of my special needs mom advice (it’s ok to be pissed off, ignore your messy house, it’s ok to do things for yourself, your little girl knows you love her, you’re doing all the right things for her and your son, etc.); everything I could think of….the tears finally stopped once we started talking about cub scouts and popcorn sales.

There was no more beautiful sight that night than of Destin, running down the hallway with a trick-or-treat bag. After that night, after all of the stories, I had him back. He said he was starving…

“Can we go to Hooters, mom?”

‘Of course we CAN!!!” I screamed with joy.

Best. Idea. Ever.

As we walked to the car, he told me about his night. He had a really great time and that was a huge relief.

It’s cliché’ to just say “count your blessings.” Brody has terrible days. Matt and I argue about dumb things like car washes and “The Walking Dead” reruns. Sam sometimes does not sleep through the night. Destin has a smart mouth some days. But they are all mine; it’s my family.

I’m so lucky I have a messy kitchen and mounds of dirty laundry. I’m so lucky that my garage is a wreck and we need new curtains. I’m lucky because somewhere out there, there’s a mom with a little girl who cannot feed herself or speak at age 2. There’s a single mom eating a twinkie for dinner while her down syndrome daughter watches cartoons.

We all have it pretty damn good, don’t we? There is always something worse. Sure, autism sucks and I hate it. I hate it with every fiber of my being. But I still have everything that comes with it. There are worse things than non-verbal autism. And after this week, I need to let that just soak in.

Brody's Diagnosis Manifesto

Over the past couple of weeks, a lot of people have asked about how Brody was diagnosed and what lead us to even pursue an autism diagnosis on the first place. That was a very scary time for us, and I usually provide some sort of watered-down description, but not the whole story.

 

 

Here is the whole story.

Brody was 100% typical, maybe even a little advanced in his motor skills…it was really exciting. He was drinking from a cup before age 12 months, he said his first word at 10 months, and he walked right at about 14 months. He loved it when we read to him, even as a baby. He would sit in our laps as we read books, just like his brother did. He let anyone hold him. He NEVER got sick, ever! He loved peek-a-boo and we filmed him playing all the time – a lot of those videos are painful to watch now and I try not to see them. Everything was perfect. I had my beautiful baby boy and my big boy, Destin, under one roof….and I wasn’t working much so it was amazing. I made Brody’s baby food from scratch, took the boys everywhere (Cardinals games, the beach, restaurants, parties, even bars! Everywhere!), and we were having a blast. What else could any woman want? We even talked about having a third baby – we lived in a tiny house and wanted another kid. We were kinda crazy. But we were ready for more children even though our bank account was not.

By his two year old birthday though, we started to see a change. Brody no longer cared about books; he just wanted to run around the room or watch cartoons obsessively. He stopped talking altogether. He never ran to me when I picked him up at preschool. He stopped playing with toys. Everything STOPPED. But his gross motor skills were pretty age appropriate. We never heard his first words again and they are just now coming back. At first we passed it off as just being a “late bloomer” or the “terrible two’s.” But his 2 year old checkup was a game changer.

Our pediatrician prescribed speech therapy at age 24 months and off we went. I took Brody to speech about 4 times a week and sometimes 5 times a week. I maxed out our benefits and literally took him whenever they had an opening. After his third visit I asked the speech therapist if she thought he was autistic…(he had scattered eye contact and his speech was not progressing much if at all).

“Do you really want to know?” She asked.

Well I guess I had my answer.

After hearing this, I took immediate ACTION. I found the top neurology practice in St. Louis and we were in the following week. The first doctor thought Brody was just delayed and needed some OT, PT and Speech ASAP.

The other two doctors were 100% sold on autism, as well as our pediatrician.

I remember the discussion vividly…and how our pediatrician softened it. She said that with an autism diagnosis, doors will open for Brody and you will see how many services he will qualify for. She framed this as a positive…like we had an answer finally.

I do not remember going crazy or crying a lot. I remember being asked a lot about his progress and Brody being compared to other kids….I really pulled away and did not want to have to explain anything.

After the shock of the diagnosis came the reality of what had to happen. We had to get Brody into the best school we knew. We had to move. After months and months of tests and referrals, Brody was placed in Parkway’s Early Childhood program and he was getting 8 hours of therapy a day. I felt this superior sense of victory when he was awarded this help. It was hard sitting through meeting after meeting about his delays, but it all paid off. The hours of assessments and roundtable discussions with administrators was paying off. He was now in expert hands. And we got to move back to my old neighborhood in Chesterfield.

The whole process was a whirlwind. And at the time this was all happening, Destin was in kindergarten. We both still feel as though he was short changed during this special time in his life. We were so absorbed in our other son. We even had to pull Destin from the private school he loved. It was tough. But I plan to make this up to him when he is older and send him to private high school.

Fast forward to now and Brody is still in Parkway. With autism, you take two steps forwards and one back every single year. Brody is now seven years old. We both are taken aback by how precious and sweet he is. He does have episodes and meltdowns from time to time, typically when there is a change (early summer, holidays and some parties are hard) but overall, I consider us pretty damn lucky. He is still nonverbal but that does not damper his personality whatsoever. He is the most joyful, fun, charismatic little boy who literally steals your heart. But if I could cure his autism, or trade places with him, I would.

Autism is a cruel syndrome. You have your little one, and then they are slowly taken from you. You see them drift away and all that is left is some cases is anger and sadness. But we are getting him back….we see pieces every month of the Brody we had as a baby.

An autism diagnosis is scary at first. But it is nothing to avoid or to deny. By denying your child’s disabilities or issues, you are only hurting them. There is light after the dark. It may be hard to hear at first, but there is a way out of it.

Some things I have learned and hope to pass on to other moms or dads of special needs kids:

-          Stop blaming your pregnant self, moms. I did this for years. I blamed myself for Brody’s autism and thought that all of my issues in pregnancy led to his diagnosis. In my opinion, autism is not caused by something you did or ate or smelled when pregnant.

-          This one is harsh….It’s NOT ABOUT YOU. You may be sad to see your son in a therapy class, you may be sad that your son cannot ride the bus to school or attend a zillion birthday parties, but it is NOT ABOUT YOU. Sure it makes you unhappy to know he has a delay or an issue, but this is not about your feelings, is it? It’s about what is best for your child, not what makes you feel good.

-          Take your child out of the race. Stop comparing your child to others. If your child has a disability, it is time to remove them from the race of development with other kids. Your child is now playing a different “sport” so to speak. They are on their own field. So, do not torture yourself by comparing him or her to another group of kids. We used to do this with Brody and it got us nowhere.

-          Become a bitch. But the right kind of bitch. I am as sweet as can be to ALL of Brody’s teachers…they kill themselves for my son and will do anything for him everyday. I am grateful. But I am not afraid to tell any of them new information about my son or make suggestions. I’ve learned this is important in IEP meetings. You can be bitchy to get what you need for your child, but use it wisely.

 

 

It's Going to be OK

There is something to be said about meeting other special needs parents.

We have a few families we are close to in the area who have children with special needs and they are amazing. They 100% get it. They just GET IT. They understand the cost, stress, sleepless nights, isolation, fear, and anxiety, plus everything else that comes with parenting a child with special needs. If you think Matt and I rock at parenting, let me introduce you to some incredible people in our lives…there are many and they all put us to shame.

This leads me to two weeks ago when I got to meet someone very special…my husband’s boss, Rob.

 

I met Rob for dinner, with Matt, too. This was after a long and stressful afternoon with Brody at home. He was nutty that day (nutty = throwing dirt for no reason, requesting a zillion popsicles in an hour, constantly stripping, hiding his shoes, you know, the usual) and our babysitter was a welcome sight for sore eyes! So by the time I met up with the guys for dinner, I was emotionally spent from the day…but anyways….

So, Matt told me before that Rob had a daughter with special needs. As soon as we ordered, I asked him about his daughter and wanted to know everything about her diagnosis. My attention and my eyeballs were completely glued to this guy, who kinda looked like Santa Claus in a business suit.

Rob’s daughter Katie is mentally disabled, and 23 years old with an IQ of 60/mental age of 10. They have three biological daughters…two of them are in college, and one is getting married in a few weeks (one is at Baylor and the other is shopping around for medical schools…I immediately thought of Destin when he said this….Destin will be our scholar I think…anywho…). His daughter with special needs has a job, a boyfriend, and lives with them at home, and probably always will. And he is fine with that, so is she. 

They are very careful about who she “hangs out” with and she is terrible at managing money. She goes to summer camp every year at Camp Barnabas and loves it. She is very happy and loves living at home with her sisters, mom and dad. She’s had a long road; high school was very tough but they got through it together as a family. They have two adopted daughters who are much younger and also have special needs (Down Syndrome).

Katie, unlike Brody, showed signs of her disability at birth. She was “floppy” meaning low muscle tone and missed all of her milestones. She did not walk until she was two and did not talk until she was four. She also could not gain weight as a newborn and they went to hell and back trying to figure out what was wrong. His wife was a neo-natal nurse at the time and she could not figure it out either.

Rob gave us Katie’s complete history…he explained all of the therapy she received, the IEP process, everything. He even talked to us about high school and puberty and all of that stuff that frankly scares the Be-Geezus about of me. There were moments, while he was sharing her story, where I could feel that lump in my throat like I was going to break down in my fajitas and start “ugly crying” in the restaurant.

You could feel the love he has for his precious daughter and how hard he had to fight to get her the help she needed. I have no idea how he managed to be so successful in his position, climbing up the corporate ladder so his wife could quit working, and manage to be such an amazing daddy to his girls.

If I were to walk you through every question I asked this man, while my husband sat back taking in my motor mouth, this blog post would be sixty pages long. So, I will spare you the specifics. He gave us some great suggestions for support groups, summer camps, IEP responses, and advice about raising children with special needs. But he went even deeper than parent-teacher conferences and information about speech therapists…he got into who Matt and I are as parents….

Brody is only seven years old and his daughter is 24. And you know what? Rob and his wife Donna? They are OK. He kept saying this over and over again….

“You know, Cassie, Brody is going to be ok…” he said, in between my relentless questions. I think he could tell I was tearing up over and over again during our conversation.

“But the real question here, Cassie, is…are you going to be ok?” He asked. And this coming from Santa Claus, is a hard question to answer.

“Oh yeah I’ll be fine.…” I said, drinking my 8^th cup of lemonade, wishing it had vodka in it.

“You matter. You are putting up with some serious shit that most people would be unable to cope with. You both are and you’re doing a great job. I mean think about what you do every.single.day. Not many parents could handle what you Matt handle day in and day out.”

He went on…  “Brody will do amazing things; he has an amazing future ahead. Because he has you both.”

By the end of the four hour conversation, I was hugging Rob goodnight. He kept saying the same phrase over and over as we parted ways…

“It’s going to be OK.”

The conversation with Rob didn’t cure Brody and it didn’t change the fact that when we got home, Brody up to his shenanigans again. It’s didn’t make Brody speak or change his stimming patterns. But it did put me at ease, and Matt, too. We met with someone who had been to hell and back, and came out on the other side to tell parents how to survive it.

It seems like every day we read about a parent of a special needs child killing their child or themselves because they cannot take it. They do not see any other way out, so they choose to do the unthinkable. Perhaps the cure for this abuse is education or even something simple like a support group.

If this new baby cooperates, our first support group meeting with MO-FEAT is June 26…wish us luck.

And Then Someone Hides Their Shoes.

I get a lot of questions about what we do with Brody that might be different from other “typical” kids, or how Brody is actually different from other kids. Sometimes people really want to know just what goes on in the house.  He has autism…so…what does that even mean in the day-to-day? Now, this is not one of those blog posts that are like “Booo… poor us, Brody is autistic, look how hard we have it…” We actually don’t have it HALF as hard as some. We’re pretty lucky with our guy.

So, if you’re wondering about how Brody’s life is different from most, here is a top 6 list, because the Internet loves lists!

Here it goes:

1.)    We gotta hide liquids.

Brody is obsessed with liquids right now, but it is getting better, thank GOD. If he sees a liquid out for too long (water bottle, milk jug, shampoo) he’ll dump it on the floor or in the toilet. At first we didn’t think this was an issue…we thought it was just an isolated incident…we’d leave the room and Brody would wander into the bathrooms. He’d grab my shampoo, always the most expensive brands, and dump them in the hallway. What we thought was isolated was re-occurring for three weeks. Then he started on my makeup, them my hairspray. Think of ALL of the liquids in your house…now imagine them all over the floor. Yeah…it’s a mess. And FINALLY this week we’ve seen this obsession go away! And his teachers do not see it at school…so hopefully he is over it. It was a long month.

2.)    It’s a naked house.

Sometimes in the mornings before school, I’ll let Brody hang around in his underwear until about 5 minutes before we leave because I JUST KNOW he’ll take off all of his clothes right before we head out. The kid loves to be naked. All the time.

 

It’s really bad in the winter…we’ll have him all bundled up and ready and he will strip naked in a matter of seconds. He will make an excellent Chippendale dancer. But that is just another piece of our lives with Brody we have to work with. He is slowly growing out of this, but we still see the nudity pop up every now and again. Once, he started to undress in the checkout line at Dierbergs…which is cute if you are 4 years old. But if he was 17 and doing this, he would be arrested. No Bueno.

3.)    Food cures all.

I used to think I could cure autism with Dr. Pepper. It’s true. Brody will do just about anything for his favorite foods. If you want to move mountains, try marshmallows. He really loves berries now, any kind of berries, so that’s a bonus because they’re healthy.

 

Brody does better when he eats healthier. And this does not really mean ONLY gluten free; it just means a healthier diet, especially low sugar. Think about it. When you’re all sugared up on doughnuts and caffeine, you have a hard time at work, right? Same thing with Brody and with a lot of kids. A healthier diet gives better results.

BUT, he is still a six year old boy, and let’s face it, we spoil him…TO DEATH. If Brody asks for something verbally, no matter what it is, he gets it (Wow could that work in his favor as a teenager!). Or if he requests it with his iPad, he also gets it. If he initiates any communication to show he wants a food, we 99% of the time will let him have it. Luckily, we’re in that berry phase I mentioned right now.

4.)    There is no such thing as too many hugs, kisses and snuggles.

Whenever I tell people that Brody is super affectionate, I always get a look of shock…”Aren’t autistic kids supposed to hate affection?” Well….not all of them. Every situation is unique. Brody loves kisses and hugs …the more the better. And I can’t complain about this one.

 

Sometimes he’ll want a million kisses at awkward times. We were in the post office last week and he could not get enough kisses from his brother…or hugs. It was adorable for the first 5 minutes and then Brody would not let Destin go. We were in line at the post office with a kissing 6 year old and my 9 year old trying to fend him off. They were both laughing hysterically, and then I started laughing hysterically…imagine two little boys in a kissing fight and their VERY prego mom laughing just as hard with them. So again, I can’t complain. I love the interaction between the two of them; it can just get to be a bit much. If you ever come to visit us, just count on Brody coming over to sit on your lap, hug and kiss you.

5.)    Parenting goes up a notch.

Brag alert: If you see my FB page on a daily basis, you’ll see connected Brody and Mayy are. Literally.  Matt is amazing. He kicks ass at this dad thing. He is incredibly involved in all of Brody’s care and very involved during IEP meetings. He comes to the meetings with questions, agendas, ideas, tips, everything. While I am emotional during these meetings and really any meeting where we discuss Brody’s obstacles, Matt is right there and he sounds EXACTLY like the teachers. He’s actually been asked to leave his current job and work with special needs kids. He truly is a wonderful man.

I think I’m a pretty darn good mom as well, but only because my other half sets the bar very high. If you see us out all together as a family, you’ll see we’re both “on” at all times. I do not want Matt to have to bear the brunt of Brody’s issues, and he doesn’t want me to freak out either. We have give each other breaks…”OK, you take Brody to kickball and I’ll hang back with Destin and cook dinner, when you get back I’ll give Brody a bath and you can take the bike out, and play with Destin outside…ok BREAK!”

I like to think of parenting a special needs child as parenting up a notch. Typical kids are tough, too,; Destin can give us a run for our money. But I’d rival a rough night with Destin being bratty and defiant about homework, with a night of Brody meltdowns and (rare) self-injury…Brody wins that hands down.

Come to think of it, that’s probably why Matt and I are un-phased when other kids throw fits…we’re kinda like “eh that is nothing…that kid is not even slapping himself…”  We’re almost shell-shocked and desensitized to kid issues. We see parents lose their shit when their kids won’t eat their chicken nuggets or if they cut in line at the mall or pick their noses and we’re sitting there like “well, hey…did you see that kid’s eye contact?! Amazing.”

If Brody ever verbally refused chicken nuggets I might buy him a pony.

6.)    We plan, and then someone hides their shoes.

Let’s say we get invited to a birthday party. The invite goes out, I stick it on the frig in the kitchen and we go about our crazy lives of Brody kisses, clean ups, school, conferences and special needs workshops. The day rolls around, I get the gift a week in advance so that’s cool. But it’s about 15 minutes before we need to leave, and suddenly we realize that Brody has hidden all of his shoes. ALL of them. So, we spend 10 minutes looking for them….but in the meantime Brody has stripped naked! And now we have to re-dress him and find shoes. And now Destin is pissed and doesn’t want to go. And now…we are late to the party.

Even though we planned our day around this event, we planned in advance, RSVP’d, etc. we are now late. You’d be surprised, but I’ve actually caught some hell for showing up to functions late with the kids. I am so sorry we missed cake and presents, but this is totally not on purpose….it’s just that something always comes up. ALWAYS. This drives my husband crazy…he hates being late. But I kind of got over that about a year ago. So, do not be offended if we show up late to your kid event, it was not on purpose. We more than likely had a naked kid running around the house or had to clean up a shampoo dump in the hallway or could not find the Dr. Pepper for the drive to your house.

Frazzled, but still here.

Despite all of these challenges, we are very lucky as we can still have fun with Brody. He is still “with us” in that he is aware of his family and obviously cares for us. We’re so grateful that he is incredibly healthy and loving. Some days are very, very hard…like the days where nothing we do makes him happy or if he’s sick and can’t tell us what’s wrong. The holidays and summers are always tough on everyone because the routine is gone. Last summer, I had to quit my job and take a few months off because of the stress. We just couldn’t handle Brody’s issues with transitions and me working. Wow, it was hard. With the holidays, if you see me or Matt at Christmas or Easter, I am probably frazzled or may tear up if you ask how we are doing.  It’s just…sigh…very hard. But we’re still here and we’re not going to stop caring for our baby or giving him a good life. He deserves all we’ve got to give, so Brody…bring it.

 

"We wouldn't change him for the world..." HECK YES we would.

“We wouldn’t change him for the world…”

I hear a lot of people saying this phrase pertaining to children/people in general with special needs. This post will most likely NOT make me very popular, but I gotta go ahead and disagree with this statement.

Don’t take this the wrong way…ALL lives matter. Just because you are in a wheelchair or nonverbal or deaf does not mean YOU do not matter. You DO. So let’s make that clear. What I’m saying is if the condition you are referring to is debilitating, as I believe autism is in Brody’s case, heck yes, I would want to change that…in a New York minute.

So for example…Brody cannot really speak yet. He says pop out words like “marshmallow” or “swing” or “yeah” and my favorite of all time, “Mom.” But he cannot carry on a normal convo with anyone. He has his iPad and his PECS book, which he rocks his augmentative communication devices, but he cannot, like, sit with you and talk about his day.

So, yesterday he came home from school in a foul mood. He was grumpy, sad and starving. So, I gave him his usual snack and he was still a mess. I held him and we played outside. He was still in a bad mood, and then started getting upset. I would, and I know he would, have loved to tell me what the heck was wrong. Maybe he had a tummy ache? Maybe he had a bad day at school? Maybe he hated his pants? Maybe he hated my pants? I had no idea. So, when your typical kid comes home from school and tells you about his/her day, that is a miracle to me. I go into shock daily when Destin proceeds to tell me all about his friends at school…

Destin: “Hey mom, Dominic made a dino in art today, it was cool..”

Me: “That is freakin’ AH-Mazing. REALLY????????! What the heck else happened?”

See…whoa. He can tell me what happened in a day!

(I am sure other parents think I am a Looney Tune in restaurants when I flip my sh*% as my oldest tells me all about Minecraft and legos…to me this communication is staggering.)

I’m getting off track here….

To say we “wouldn’t change Brody for the world" is an incorrect statement. I most certainly WOULD change his diagnosis for HIS benefit. I recently made this comment to another special needs parent and immediately got the cold shoulder,

“Why would you change him? Do you not accept your son the way he is? Don’t you think his life matters? Are you ashamed of him?”

Ummmm yes, I certainly DO accept him. I love him for who he is. All of us do, his dad, grandmas, siblings (Destin accepts everyone no questions asked, ALWAYS, I am so proud of him). So yes, he is accepted. And shame?…No way. How could you not be proud of our son? But that does not mean I wouldn’t want him to have the best opportunities in life. Being nonverbal has some limitations, let’s just be honest. No one will hire a nonverbal doctor or a teacher who elopes around the room. That is reality. And to make it in reality, and to be independent…well yeah I would change his disability and remove it. But are we accepting that he will live with us indefinitely? Yes...no denial there.

I do not want to change Brody’s personality or his sweet spirit. Never in a million years would I change who he is as a person. But if someone offered me a pill or offered me a deal like “if you give up your ability to speak your son is cured today” I would take the meds or become Helen Keller in a heartbeat. I would do some pretty crazy, effed-up things to see that Brody is happy, healthy and living life to its fullest. Like bat-shit crazy things like give up a limb or trade my organs for medications/cures or worse.

Brody cannot speak – I would change that.

Brody hits his own chin when he gets really, really mad – I would change that.

Brody has issues with sleeping and is up every morning before 6AM – I would change that.

Brody cannot go to movies…ever…or be around loud noises – I would change that.

Brody is beautiful, smart, special, affectionate, kind, and joyful – I would NEVER change any of that.

Perhaps when people refer to “we wouldn’t change him for the world” they are referring to higher functioning ASD kids? Sure…if you’re ASD diagnosis means your child is unique or obsessed with trains or bowling (as Destin was for like 3 years and his teachers thought he had autism, too…whole other post on that one!) or maybe that means your child is quirky and can play concert piano, but is otherwise pretty typical, then cool. Yeah. Don’t change him/her. But what if your kid injured him/herself? What if they were not toilet trained at 25? What if they could not walk at age 7? Some kids are in that very situation. Wouldn’t you WANT to change that? I would. Not to make them some cookie cutter person, but to HELP them. I am really talking about the lower functioning end of the ASD experience.

So if curing autism or giving Brody every opportunity in life makes me a bad mother than shame on me…haul me off to bad mommy jail.  

I would cure him if I could. If I could trade places with him, I would. TODAY.

But I can’t. As moms we want to fix everything and we want everything to be perfect for our children. But this is one problem that mommy cannot fix.

So, we do our best. We accept him and love him. And he will always have a safe place with us. And who is to say that Brody won't make a full recovery and become who I know he was meant to be...Channing Tatum.

The Question No One Asks - But We Have the Answer Already

This week, while in the drive thru at Chik-Fil-A, (a common occurrence these days for a pregant chick in a rush all the time) I saw something through the window that stopped me in my tracks.

I'm sure you've seen groups of special needs kids out and about in the community; you see them at Target or First Watch or even the grocery store. But that day there was a group of about 8 kids, with all different disabilities, eating lunch at Chik-Fil-A. Each little one had a helper/aide with them supervising the lunch date.

This group was very diverse in age and in disability - some of them had Downs Syndrome, others appeared to have autism (based on behaviors, rocking, etc.) and others seem "typical." as they ate their lunch.

There was one little boy, probably 10 years old, who was showing autistic behaviors, only he could not feed himself or sit upright. His aide was helping him eat his meal. And I guess you can imagine what happened next, in my car, as I dug out my cash for the drive-thru...I could feel the lump in my throat swell and my breath shorten...the tears started. My heart just broke for that little boy. Mostly because I know, all too well, the fear, stress and worry his parents must be facing...(or maybe I can't imagine? We're so lucky Brody is "with" us and can understand us, feed himself, is potty-trained, can swim, etc.) And who knows? My emotion could be unwarranted...he probably has a loving home and he is out with his classmates. He seemed very happy, enjoying his lunch around people who obviously cared about him.

By the time I got to the last drive-thru window, I had calmed down. I continued to think about that little boy all day.

This is my typical reaction, pregnant or not, when I see groups of special needs kids. I get very emotional and sometimes, before I start to get emotional, I will walk over and say "hello" and tell the helpers how wonderful they are...not to appear "perfect" but as therapy for me. It helps to get close to disabled individuals - it brings me closer to my son.

On our way home from a family dinner this weekend, I brought up this story to Matt and the boys.
And a question came into my head...it's been there for a while but I never said it loud. Really to anyone but close family. Now we've discussed this very question with 3 physicians...we already know the answer. And so far, Sammy is 100% healthy. A lot of the triggers we noticed with my last pregnancy, are not showing their face this time..and I won't bore you with statistics or other facts we've discovered on this journey,but,

"What if Sam has autism, too? It could happen..." I announced to the car. Brody was fast asleep.

Before Matt could answer, we heard Destin say from the backseat,

"I'll take care of them, mom. I'll take care of 2 autistic babies. I can do it," he no longer sounded like a 9 year old 3rd grader, he sounded 25. He sounded like a man.

"Destin, you are amazing..." we said to him.

While his reaction was powerful, it made me a little sad. Destin doesn't need the burden of caring for special needs siblings - he deserves to be happy. The confidence in his voice with that response was jarring. We explained that he alone would not be caring for his brothers. That we will all love Brody and Sam...no matter what. It was a very honest discussion and frankly, one that had to happen.

The truth is, if Sam has autism, we're going to accept him with open arms, just as we do with Brody. And as for Matt and I...we can both safely say that at this point in our marriage, we can handle anything...from moving across town in 30 days to autism diagnoses, to health problems to 2 preterm deliveries...and now to a miracle, literally a miracle baby, we can do it. Together.

So, this question has not formally come up outside of our family car, but we have addressed it...there are moments of sheer paranoia, sheer confidence, joy, every emotion. We try to throw out those moments of doubt in our house and look around us instead of ahead.

At this time, Sam is 100% healthy, squirmy and definitely BOY! We're taking it one day at a time and we're ready for whatever this little one has in store for us.

We'll remember to enjoy the ride. You only get one.

Let's Talk Reality

Back in December, I took my therapist's advice and decided to attend a workshop for special needs kids/parents transitioning after high school. My BIGGEST fear with Brody is what is going to happen after the safety and comfort of Parkway schools. Right now, the kids love Brody and he is very popular. The little ones say "hi" to him in the hall, the teachers love him, and he is an adorable little 1st grader. But that won't last forever. So, to face my fears, I attended the workshop. I was my typical annoying self and asked a lot of questions, sat in the front of the room, all that stuff.

I also stayed back after the workshop and talked to EVERY high school teacher there. I explained Brody and what was going on with him. I told them all about his skill level and speech. EVERY one of them explained that you just can't make predictions right now. He will come so far. They also explained that it's all about independence with special needs kids. They may not be able to do long division, but they'll be able to cook dinner, clean the house and hold a job. So, we are stressing independence at home...getting dressed alone, cooking breakfast, etc. And having fun with friends, too.

So, REALITY check...he's going to be fine. There are actually a lot of options for adults with special needs after graduation. I thought he would be sentenced to loneliness or something, but no way. The workshop gave me some great ideas. Not to mention I met some parents of high schoolers with autism. They were wonderful and very funny. All of them had a great attitude about their kids and were extremely supportive.

That brings us up to speed with where Brody is today.

Right now, his speech is improving with what is called "Highly Preferred" items. So, the more he loves something the more he says it...and he says "Mom" A LOT. YAY! But he also says "soda, cookie, candy, Destin, shoes, I Do It, night night, juice and bye." His receptive language is really improving...meaning he responds to commands. We'll ask him to get his shoes or go "bye bye" and he'll get his coat. So he definitely understands us, he just can't express a verbal response. He's also awesome at art! I have a ton of Brody originals that will be displayed in his new brother's nursery.

He's rockin' out with PECs. He moves really fast and puts sentences together with his pictures. So, he can put a sentence together with his picture book that says, "I want to go outside." Pretty cool.

All in all, we're happy with his progress...which brings us to another point...REALITY.

In our house, we live moment to moment. That is both exciting and insane. We embrace all of Brody's challenges and triumphs day-to-day. And it brings us into reality every day of what Brody can and cannot do. I typically push away what he can't do because, I mean, why bother focusing on the negative? I would go insane. So, instead we focus on the progress. Which can get tough on a bad day when he is extra moody or jumpy around the house.

On most days, we're in our bubble of our happy and nutty house. Brody is watching movies with his brother or we're going to the grocery store or out to dinner. And Brody does GREAT out to eat with friends/family. We've taken him to boy scout meetings and he does great there, too.

REALITY creeps up on us the most when we're around more typical developing kids and mostly typically developing kids we do not know.

Case and point: The School Talent Show. At Henry, each kid is required to do some sort of talent in the talent show...Talents Shows run twice a year. Twice for every grade. So, we go to Destin's little shows and he sings some goofy song or plays the drums. It's cute. He tries hard...it's no American Idol, but it's funny. We give him high fives after and all is well. He goes back to class and we take him out to dinner typically that night. All good.

It's a different story for Brody. He plays the bongs typically and an aide has to help him. He really kind of hates it because of the noise and the applause afterwards. It usually ends with us holding him and calming him down after the show. He's freaked but all the commotion. I kinda wish he could be excused from it, but I get it. He's a part of the class and he will definitely grow out of this...we see him getting less and less freaked as the year goes on. I also leave with him afterwards. I tend to do that with Brody. If I go to school to visit him, I leave with him. Yeah...I gotta stop that!

But like any mom, I think, in this situation...you can't help but sweat a little. You sit during a talent show and watch the typical kids sing songs from "Frozen" and your kid can barely make it to the stage. It's tough. Plus, none of the other special needs parents come to the shows. I wish they would.
I could never miss a show if Brody was in it. No way. And REALITY hits even harder with the looks of pity from the other parents. The parents filming the Talent Show with their iPads (which that is totally me during Destin's school choir shows BTW). That hurts. While Talent Shows are NOT about me whatsoever they are about Brody's growth, I can't help but cry a little when a get to my car,

"But Brody is so goregeous. If he wasn't autistic he would be...(fill in the blank)."
"But Brody has so much inside! Why can't it just come out!?"

But after the tears leave and I come back to the moment, I realize it's just a freakin' talent show. That's all. Nothing more. Breathe. And Brody is more than a song or a drum solo.

We're expecting another boy in July and I have to confess here...the pregnancy has helped our family in ways I never thought it would. I know that sounds crazy but it does. Like that workshop I mentioned earlier...I felt so empowered knowing that Brody would have another brother to lean on and Destin would have more support in his life. Our Brody will never be lonely and our house will never be quiet again! Wow, what a relief that is!

So, the anticipation of another little boy is really what our family needs. It's what we thought we never needed. But, we need the joy. We need the excitement in our house. And our boys need their baby brother. I cannot wait to have a crazier house, happy kids, and tons of love. The joy is what keeps our marriage strong and our house moving.

In fact, as I am typing this, Destin is playing Mario Kart and Brody is cheering him on...and so the night begins.

That is where we are today. Living in the moment. Focusing on the positive. Crazy with anticipation with another boy on the way. And filling this house with noise, noise, and more noise.