This parenting gig is FOREVER!! Why does that suddenly overwhelm me?

I love reading posts from optimistic, positive moms. Those that uplift me and make me smile. This is not one of those posts.

Last week, I hit my annual wall. Luckily, this doesn't happen very often but when it does, it levels me both physically and emotionally. Molly and I were  coming off a 9 day trip where I was her sole caregiver. As most of you know, she is a pretty easy going now at 19 years old. Her behaviors are minimal, she happily listens to her music or peruses her FB friends' pictures, she sits nicely with a group and loved digging in the sand at the beach on our trip back to Rehoboth Beach, Delaware. There was no Brooke to go play in the water or dig in the sand with her. No Jack to play "Werewolf" with her at night with the rest of the kids. There was no one to take her on a walk/hike and give me a mental reprieve from responsibility. Just giving you little background for my demise ;)

Molly can't do anything alone. Nor does she initiate wanting to do anything so she can happily stay in her room FOR HOURS with no complaint. This, my friends, is good and bad. My conscience is what nudges me to go poke my head in her room and say "Would you like to go to the pool for a little while?". Which is always answered with an eager nod of the head. Or a "Do you want to go to the grocery store with me?" Eager head nod.

So when a day goes like the one last week, I feel incredible guilt. Figured maybe you'd want to hear about it?

We were driving to speech therapy; a weekly appointment with Molly's "boyfriend" Spencer and a few other adults that use augmentative communication. She LOVES this weekly gathering and they have all grown close as friends through the years. Molly was edgy that afternoon. She was making noises that were making me edgy. Or maybe I was the edgy one and she was feeding off of me? Anyway, I said to her "Molly, what is wrong? You have to tell me on your talker" (because I had NO idea why she was crabby). She turned on her talker and went into her classic spiel "Alana, Aubrey, Mallory" (these are 3 darling friends who we have camped with her whole life.) Molly says their names via her talker all.the.time. I'm never quite sure what she means by it: Do you want to see them? Call them? Go camping with them? Hike with them? Do you miss them? Or are you just thinking about them? Sometimes....miraculously...she will use a verb and say "hike"..or "camp" and then I know.

This time however, I wasn't as gracious. I didn't give her all of the prompts and help. I was TIRED of trying to decipher each and every word. I felt pissed that she couldn't tell me WHY she was edgy. To make matters worse, she then said "Zebra".

ZEBRA??!! WTF do you mean by ZEBRA??!! (I thought the WTF part but my southern upbringing didn't allow me to say it out loud ) You are edgy and you are thinking about a ZEBRA?  Really?Here's what I DID sarcastically say: "Oh, do you want a zebra as a pet? Do you want to feed the zebra? Do you want to sleep beside the zebra (she hilariously said "No" with her mouth and shook her head when I asked this one). The obvious question that I know you ALL are thinking is "Do you want to go to the zoo to SEE the zebra?"...but I wasn't going to give her that one. I'm so mature aren't I? Because I can almost guarantee that that was not what she really wanted. Because then she went on and said:

"Dinosaur."

See what I live with? I play 20 questions with no winning answer at the end.

In one instant, I could feel myself spiraling. I thought "This sucks!!" My daughter is 19 years old and can't answer simple questions. We have worked so hard for her entire life to get her to be able to semi function in life and here we are STILL where she can't tell me how she feels. She can't clearly tell me ANYTHING!! And I am responsible for her FOR THE REST OF MY LIFE!! Her learning curve is so flat that it is straight as an arrow. The fact that we are still trying to teach her to cross the street safely is frustrating. Watching her level of confusion in music therapy as she tries to sequence 3 actions is sometimes hard to bear. I don't get how she STILL doesn't understand how to shampoo her entire head and not just her bangs? How does she not get that when we talk about it (and I help wash it) every.single.day??!!

I suddenly felt trapped. Felt like I might suffocate. This is FOREVER!

I know part of this reality stems from being able to watch my beautiful son grow, thrive and flourish. He is becoming a self sufficient young man who is making great choices for himself. He is entering his senior year and starts the college application process. He has made us so proud and scared all in the same moment with his decision to enter a military career and apply for the Air Force ROTC program. "I want to serve our country" (are not words you would have EVER heard out of my mouth at that age) but came straight out of his and I tear up with pride for that maturity. He will make a great leader and I can't wait to watch his next steps.

Things have come pretty easily to Jack. Not to say that he doesn't work hard (because he does) but juxtaposing a typical kid next to Molly's autism shows the glaring challenges that autism presents. Nothing is easy for her and yet she tries with all of her might to succeed. She works hard and rarely says no to trying.

So when I came home and was sharing my bad mommy moment with Brooke, he said "Well you HAVE spent a lot of time with her recently". Sigh. I felt so heard.

"But think how hard it is for her..." he continued. Ugh! And that's when I wanted to hop into my soon to be bought tiny RV and travel the country solo. He's right, I KNOW how hard it is for her and that's why I felt so guilty even acting that way. But sometimes I crumble. And sometimes I'm not a good mom. And too often lately I'm realizing that I don't get that next phase of life that all of my friends are about to have:  an empty nest. I don't get to reinvent myself as I enter my 50's. I'll be Molly's mom and caregiver forever because she NEEDS me. And right now that freaks me out.

"Smelfie" (A Smethurst Selfie") at our family reunion at the beach. Molly is in back in blue. I'm waving.

Y'all have disability favorites!! I am onto you.

I have been a mom of a child with autism for 19 years. I thought that I had experienced it all (or at least A LOT of the ups and downs in that time). But I didn't know that I was missing a little something special until last week.

And it hit me like a ton of bricks.

The realization came to me in the most unexpected way.

It came to me as I was joyfully spending the day with a young lady with Down syndrome.

Let me set the scene for you. We were at the pool. Molly was happily "swimming". She  mostly stays in one spot in the middle of the pool standing, holding her pink donut raft, dunking her hair every now and again while keeping a very watchful eye on me wherever I am. Kory and I were walking together beside the pool. A mom looked at me and gave me a very sweet, knowing smile. I smiled back.

We passed another mom sitting in a lounge chair sunning herself. She gave me that EXACT same smile and knowing look!! Words didn't need to be said...she understood that Kory had Down's. In the blink of an eye this mom could picture the myriad of challenges that might have occurred in Kory's 18 years of life. Heart issues? Speech? Teasing? Friendship issues? Etc..etc, etc. This mom was giving me a fist bump of sorts; understanding and encouragement all with a simple facial expression.

Kory and I sat down  in our lounge chairs and proceeded to have THE BEST conversations!! She shared things about her life with me and asked me questions about my life. She was super engaging, funny and such a joy to be around. She has come SO far since we met her in pre-k years ago when she and Jack started school together. Being with a person that can actually talk to me (unlike my daughter) is such a thrill that I can't even put into words.

Kory gets to go to LA soon to take an acting class. I told her that when she is rich and famous that I wanted to be her chauffeur and massage therapist. She agreed. Then said "Molly?" (meaning what could Molly's job be?). I said "she is an excellent cleaner. She could clean the mansion." Kory said "Perfect". "Jack Bell?" she said looking at me with a smile (she always includes his last name and has adored him forever). I told her that he was hoping to go the ROTC route for college and she immediately said "Body guard". LOVE her!! I told her I hoped that it could be a water front home and she said "of course". So people, it looks like I'm set when Kory makes it big.

As we were packing up to leave, I caught eyes with another mom sitting nearby who gave that same look!! I was like WTF??!! I have NEVER gotten that look in all the years with Molly and suddenly it's everywhere!

Autism manifests in negative behaviors. Autism gets a lot of judgement on
our parenting (or perceived lack of parenting). Autism is cute kids who don't appear to have an outward disability. Autism doesn't give parents knowing supportive smiles.

                                            And that, my friends, was a WILD realization!!

2 month hiatus!! Hello summer.

I keep getting these guilt email updates from my blog site that tell me how many people are checking in. I immediately erase them and think "I'll write a post tonight". And then I don't. It has been TWO MONTHS since my last update and I am sorry for that!! Sweet Molly has had so much going on so I'll give you a quick summary and hopefully get back into the swing of writing since I can take my laptop to the pool and write while Molly swims.

Let's see....we had just gotten back from Spring Break in San Diego the last time I wrote.

Beautiful prom people

Since then I got hired as a script writer for an amazing company called Gemiini.  Gemiini.org Check out the information video they have on the website. Very informative. They create quick videos to help children with special needs learn how to speak. The videos model appropriate behaviors and interactions as well. Most of their videos target the little kids. They hired me since I have an older daughter on the autism spectrum and have a little insight into the needs of older kids. Many of our kids needs are (sadly) still the same as the younger kids. Yes, we still help our kids wash their hair. Only Molly's bangs get clean if left to her own devices. They are REALLY clean too!! Some families are actively involved in ALL bathroom aspects. Count your lucky starts if you don't have to help your adult child with those things!

Soon they will start producing my videos with older actors which will be cool. The script writing learning curve was steep in the beginning but I am quickly understanding what the company is wanting and soon you will be able to see videos teaching our kids "Stranger Danger", "How to cross the street", "How to invite someone on a date" (what to talk about on the date, etc), "Appropriate Internet Use". It has been fun and allows me to still be available when Molly gets home.

Brooke also got a new job and is back in Orthopedic Sales.

Jack and his team had an awesome lacrosse season. They went to the state semi-finals! This is only the second year in his high schools' history that they have gotten that far (last year was the first). Their goal is to make it to the finals next year. And win it ;) He will be a tri-captain for the team and is looking forward to it!

Looks like Molly was bummed that she wasn't going to prom this year.

Awesome rainbow after a deluge during one of Jack's lacrosse games.

Jack had Prom and After Prom. ACT's and SAT's. Ended with a good GPA and is looking forward to club lacrosse, camping with his pals and his first job! Molly had speech therapy, music therapy, "work" and many long hikes in the mountains with her dad and dog. She looks good doesn't she? She's is great shape from her speed hiking.

Life has been full and we are looking forward to a little summer down time. The pool opens this weekend and that is one of Molly's favorite places to be. Look for me on the hill with my book or laptop!!

Would you take candy from a stranger? Molly sure would, no problem!

Thought that you'd love another peek into Molly's therapy life. She started Neuro Rhythm Music therapy about a month ago, where it combines both ABA therapy with music therapy. An awesome therapeutic approach for my girl for sure. They work on listening to verbal instructions and following orders. They work on sequencing patterns, which is also hard for Molly...but fun when you get to play an instrument. We have added two life skills goals to each session as well. One is STILL working on crossing the street safely and the therapist Sarah made up a song that we sing. Soon the song will be faded to just in Molly's own head every time she comes to a busy intersection. Today's blog post, however,  is about "Stranger Danger" and what most of you have done with your elementary aged children. We are still working on it all these years later. Molly has never met a stranger and would hop into the car with whomever pulled up and said "Do you want a ride?". That's why she is never out of sight of support and never goes anywhere alone.

First we needed to start with pictures of family members and folks that she knows. To pair with the pictures was a green sheet of paper with the word "Good" on it. That's all we worked on the first day. Jack, Mom, Dad, Nick, Jake, Katie, Luke and Emme (all her cousins). It was a little disheartening that Sarah would show a picture of our family of 4 together and Molly would hesitantly point to the "Bad" sign. Eek...is it my cooking? Brooke's breath? Jack's constant need to snuggle you? Something that I don't know about? Luckily Sarah didn't call Social Services on us and knew that Molly was just confused about the words and what was expected. Fairly quickly she was labeling all the family photos as "good". Whew. I got such a chuckle as every time the picture of her cousin Nick would be shown, she would say (with her mouth) "Carson" who is one of Jack's friends. And darned if those boys don't truly look alike in that picture!


Then Sarah pulled up all these random pictures of people off the internet and showed them to Molly. They had a red sheet of paper that said "Bad" on it placed beside the computer. "Stranger" is such a vague, hard word and we were trying to break this down into the most simple category. Eventually the Red paper will say "Stranger" and the green will say "Friend".

Of course all the cute young girls and attractive boys, Molly was labeling as "Good". And we'd have to say "No, you don't know them, they are bad". GOSH, this was NOT easy for me; I was raised in the South where you're supposed to be nice to everyone. But this was the only way we could teach this skill to Molly who likes everyone too and has no discernment for the murderer and sex offender.  ;)

Then Sarah randomly switched the photos between family and stranger and Molly was nailing them 100%. Sarah wrote a song about saying "Hi" to a stranger if they approach you but then you turn and walk away. When we practice, Molly leans in to the computer face, says "Hi" and then very non chalantly turns and walks away. She added these words "Go away" (clear as a bell) out of her mouth as she is turning. Kind of rude but made us laugh too.We practiced singing the song for about a week until it was time to take these skills live....out into the hallway of a fairly quiet medical building.

The sign you see at the beginning of the post is what I held as I tried to lure folks off the elevator to engage. What we quickly realized is that everyone is SO nice and trying to help that they would say too much. One lady said "Hi, do you want any candy?" (classic, right?) Molly adamantly nodded her head and said "Yesh". Sarah said "No Molly, this is a stranger, someone you don't know. You can't take candy from her". Molly responded "Yesh, Yesh, YESH!!" while nodding adamantly. She REALLY wanted that candy :) The mom then mouthed to me "Sorry". I was laughing and said "Thanks for trying. Now we have something else to work on".

Back to the drawing board. You just never know what issues might come up and being flexible with these learners is not easy.

Spring Break fun in San Diego area.

3 am send off. Boys clean up nicely, don't they? Go Indians!!

Our hosts in Tempe on our way to San Diego; sweet Maddie and her parents Bubba and Tina.

View from our room in Oceanside, Ca

Molly loves a hike along the ocean as well as in our mountains.

Our future "tiny house"? I'm down with the idea :)

Team photo after their last game! Great time for the boys over break.

Water was FRIGID!! Even Molly didn't go all the way in :)

Selfie. Don't you love her glasses that she quickly grabbed off of a wall full of options? Girl knows what she wants.

Great people watching from the Sky lounge. We attempted a "selfie".

I love these for some reason. Part of our 18 hour road trip to San Diego fun.

Oceanside Pier. We loved this area. Had a great lunch at the end of the pier one day.

Yummy authentic Mexican restaurant. Ate here twice. Good margaritas too :)

Didn't last long on Coronado Beach as it was SO windy and cold. But warm where we had lunch on the main strip.

Molly will dig in the sand all.day.long. Dribble castles are her forte too.

Jack snuck in a goofy face to go with his ruby red, sun burned thighs.

Last day on the beach.

After 19 years of Molly's influence, we are experts at detecting autism around us. Brooke and I couldn't decide if there are just a lot of kids with autism in general, or if those families all love to migrate to the beach on Spring Break with their kids like we do? The first day we were out, there was a big fella standing in the shallow part of the water flapping away. This is the first sure sign of autism. He seemed SO happy. He had a younger sister, in the 12 year old age range, who was standing guard nearby totally immersed in her phone. Brooke tried to engage her in conversation and left feeling like she might have some special needs too? Or maybe she was from Mexico and wasn't very fluent in English? He wasn't sure. He shared this with me when he came to sit back down. It didn't take long for the girl to realize that Molly was like her brother. It was fun to watch her watch Molly. She couldn't take her eyes off of Molly as a matter of fact. Wonder if she had never seen another kid like her brother?

In the old days, I would have gone down to the water or over to the hot tub that Molly was sharing with others to explain and buffer the looks and stares. I think that the difference now is a) I'm tired of that role b) We'll never see these people again c) Molly is so sweet and has such an innocent air about her that folks don't seem to be TOO judgey. d) I was SO comfy in my beach chair absorbing the sun, listening to the crash of waves, and smelling the salty air. I was in my happy place and didn't want to move.

On their daily walk along the beach, Brooke saw another flappy boy outside of his condo playing in the sand. When getting onto the elevator to go up to our room, I exchanged a meaningful mom look with an exhausted looking mother whose son was on the verge of a melt down. He made the same sounds that Molly makes and I just wanted to tell her that I totally understood what she was going through. But I didn't as the doors closed and we went our separate ways. "Good luck soul sista. I hope you get a little down time on the beach" I thought.

These kids are everywhere!! As are their exhausted parents.

The beach is the PERFECT vacation for families battling autism. Our kids seem to universally love the water. The ocean makes a lot of noise which buffers our kids noises (i.e. less stares). It's wide and vast so that you don't have to be on top of others.  My guess is that the white noise is comforting for them? That the weight of the sand on their feet as they dig feels good? Molly loves to be buried in the sand so I guess others love it too?

On an off the beach note, our girl shocked us a few times on this trip with her willingness to eat new foods. She is such a picky protein eater: no meat, no chicken, no fish. And yet on this trip she tried: fish and chips!! Of course it was deep fried and who doesn't love that? She NEVER wants fish in any form and yet she ate every bite. She also chose fried pickles wrapped in prosciutto and cream cheese over ordering her typical pizza or salad! Note the common denominator is "fried"! We were just thrilled to see her willingness to try something new. Love that!

Jack was able to join us the last 3 days of our trip and help with the looooooong 19 hour drive straight through to snowy home. His lacrosse team had a great 5 days of "bro time" on and off the field. There is a lot to be said for down time hanging in a hotel room, having rap offs, eating meals out together, competing as a team against schools that you have no rivalry against and where you can fine tune your plays. Where you can chill at the beach playing frisbee, volleyball, skim board and if manly enough get in the water. As a parent in the stands for their two games (and the only time we were allowed to see them which I thought was a great rule), it was fun to see the sideline camaraderie as the boys bantered with each other. It felt like we gave our sons a gift to go on this trip.

Vacations are good for the soul, good for family togetherness and a great way to hit reset. What's next world?

Special Olympics State Basketball tournament 2016 in Denver

Brooke warming Molly up before the game. Trying to get her to catch a pass, then shoot.

There are weeks where I have SO many stories to tell. And then there are others, like this week, where my mind is blank. We even had two more Special Olympic Basketball games up in Denver for the State tournament this weekend, but I don't have anything to add to the sweetness that I posted about before. Same smiling Molly running up and down the court. Same generous teammates that congratulate each other and the other team when baskets are made. This time Molly DID catch a pass (instead of turning from it) and tallied a big 4 baskets from her strategic stance under the hoop. Girl is NAILS from there. They lost both of their games but she didn't seem to mind.

Now that Jack's lacrosse season has started, Molly is back in the stands listening to her music, bundled up for all Colorado conditions that are bound to come along. Hat, gloves, wind resistant coat, blanket on the legs, stadium chair to warm the tush, and of course her head phones and music playing in her ear. She happily sat between Grandma and me at his game vs Pine Creek last night, while her dad worked the penalty box on the field. She was beaming and I'm not sure what had her so happy? Maybe she loves lacrosse as much as I do.....but she wasn't watching the game? She kept eyeballing whichever teenager walked by....maybe seeing if she knew them? Like always, she puts her pretend hand phone to her ear while looking intently at me and I have to talk to her like she is having a conversation with a friend. She has a repertoire of 6 different kids who she likes to "talk" to. I am happy to do this a few times "Hi Alana. What are you up to? I'm here at Jack's lacrosse game." And just as quickly, Molly says "Nana" (which is Goodbye). She never wants to talk for long. :) But when the action is tough on the field and I don't want to be distracted, I tell her "Let's call them back AFTER the game. Goodbye". And she (luckily) seems appeased by this.  Not sure that I have ever remembered to call them back? ;)

Jack had a great game last night. They won 10-8. He scored two of the goals and his face offs were strong. Gosh, I love to watch him play. He is very competitive like his parents when it comes to sports. So he DOES snag the lame passes and he DOES fight for the ball....unlike his super sweet, passive sister. So I hope that I have a few more Molly stories as the season progresses cause right now it feels all about lacrosse. See you Wednesday at our first home game!! Go Indians!!

3 months of sleeping with O2 results are IN!

For all of Molly's life there have been many unanswered questions. It's like reading a cliffhanger novel where the last page has been ripped out. How does she feel about...well, really everything?! Why didn't she dance at the Valentine's Day dance when normally that's her favorite thing to do? No clue. What does she want to do job wise? I have no idea? Where does she want to live? Again...not sure? What is her favorite band? Dirty Heads? Bob Marley? Miley Cyrus? Or probably another? What does she want for Christmas? I hate that annual question from caring family for what to get her as I have NO idea either. Dang, same happens in February for her birthday. Didn't we just go through this two months ago?

So when we get lab results back after 3 months of following doctor protocol, it is VERY satisfying to see cold, hard results. Answers!! I love that.

Back in November, I shared that Molly had gone to the doctor. Based on her blood test results there were a number of things that he wanted to try. Her red blood cell count was very low which required sleeping with oxygen every night. She has done that like a champion; not complaining again after that first attempt. She straps it onto her nose and around her ears, tightens the chin strap and sleeps through until 4-5 am when I hear her turn it off, take the hose off and go back to sleep for a couple of unrestricted hours.

Some of this medical stuff may be super boring to most, but I know other parents of kids with autism want details, so I'm sharing here. Skim if you like.

Molly's O2 levels are now NORMAL. Yippee!! Dr Kucera would like her to stay on O2 for the rest of the year and we'll retest then. Her protein levels are good as are her iron levels. The Zithromax that she was on once a week for 3 months, lowered her strep levels from 300 down to 260. He'd like to see it down to 100 but now that the process has been started, hopefully it will continue to trend downwards. (See the information about PANDAS at the bottom). Molly's OCD tendencies are still there but they do not rule her life (remember nipping the white board issue in ONE DAY!!??) so we feel like the protocol has helped. She is also talking more in the sense that she imitates many words that we say. They are not often clear with good enunciation, but she is attempting which she hasn't really done before.

Besides powering down 9 supplements in two big gulps (LifePak Nano, Protandim, Probiotic), and sleeping with the O2 at night, this has been a really doable protocol for us. In the old days, I had to grind up the supplements and mix them into baby food or applesauce for her to take since she couldn't swallow pills. Those concoctions had to have tasted horrific and she'd choke it down two times a day. Now she gets everything she needs with a powerful probiotic first thing in the morning and her body is loving life. She is still the tiny 116 lbs but it seems like this is her new healthy, happy body.

We are now done with the Zithromax and only need to add Kefir into her diet via sauerkraut and pickles (Bubbies is the brand the dietician recommended that we should buy at a natural food store). Looks to me like our whole family can benefit from kefir:

Easily digested, it cleanses the intestines, provides beneficial bacteria and yeast, vitamins and minerals, and complete proteins. Because kefir is such a balanced and nourishing food, it contributes to a healthy immune system and has been used to help patients suffering from AIDS, chronic fatigue syndrome, herpes, and cancer. Its tranquilizing effect on the nervous system has benefited many who suffer from sleep disorders, depression, and ADHD (attention deficit hyperactivity disorder).

The regular use of kefir can help relieve all intestinal disorders, promote bowel movement, reduce flatulence and create a healthier digestive system. In addition, its cleansing effect on the whole body helps to establish a balanced inner ecosystem for optimum health and longevity.

Kefir can also help eliminate unhealthy food cravings by making the body more nourished and balanced. Its excellent nutritional content offers healing and health-maintenance benefits to people in every type of condition.

The sweet part of sitting in the doctors office for 1 1/2 hours yesterday was the big smile that filled Molly's face when Dr Kucera praised her for the O2 results and how good her labs look. It appeared that she really understood him and was proud of herself. She wore that huge smile that melts me every time as it's the real and true communication of her feelings..... even without words. Love that girl!




Many kids with autism do well on the PANDAS protocol. Here's information for you die hard medical people:

What is PANDAS?

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.