Tuesday’s With Autism: Think BIG Picture

MONDAY 11:55pm I’m officially five minutes ahead of schedule, folks. I have a sleeping four-year-old on my elbow, a snoring teenager making my eye twitch, but I’m ahead of schedule and I’m gloating, here and now **confetti throw**

In fact, this is the first time I have been ahead of schedule for the last few months. I recently took a new job as a Program Manager at a non-profit activity center for adults with additional needs. Last week, I would just stare at my phone in disbelief and set it down, like I was a time traveler from 1985 – I just couldn’t deal with the loud rectangle. It’s a slow process, but I’m getting into a groove.

I don’t want to play my hand too fast, but I LOVE my job. I have not only gained friends, but I have gained perspective, dance moves, checker skills, and personal, long-term mama goals. I hang out with an amazing group of adults – and it’s such a cliche – but while yes, I teach them, they also teach me.

Speaking of adults, let’s talk big picture plans – do you have a plan or are you an ostrich with your head in the sand? If you are an ostrich, it’s okay to admit it here and now, but you should game plan to morph into, say, a rhino, pretty quickly.  Are you charging towards your kiddo’s future? If not, why? Are you planning work skills? Money management? Independent living skills?

Listen, even if you are at the beginning of your journey and this feels IMPOSSIBLE, you need to PLAN to make your “impossible”, possible. It is easy to get caught in the cutesy-putesy childhood section of a diagnosis, but I’m gonna shock you with a little known (see: ostrich) fact – Childhood is 18-21yrs long. Adulthood is much, MUCH longer. In an “ideal” scenario, it continues long after you are alive.

Breathe folks, I am telling you this as a parent of a 14 year old that has been diagnosed for 10 years. I could not comprehend what I am personally saying even five years ago, it’s okay if you are not here yet…..just know you need to get here.

If you have started thinking of the post 18-21yr continuum, what skills are you working on? What are you including on your child’s IEP? What social skills and goals are you working on? Please sound off below or share on the FACEBOOK page – we learn from one another – let’s collaborate!

 

 

 

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Tuesdays’s With Autism: Following the Leader

I’m back!

It’s been a whirlwind few weeks, and the winds are still whirling, but I wanted to be sure I caught this Tuesday to get back in the groove of things.

Between holidays, a new semester, my advocacy class, and Aiden’s birthday creeping up, I have been thinking a lot about his journey and how we have shaped him for adulthood. I wrote this piece for another venue, but I’ve decided to share it here. Happy New year!

When children show a knack or interest in a particular activity, parents tend to go above and beyond to help them thrive. If a child takes a liking to a soccer ball they get on Christmas, they are enrolled and on a team by spring. Say they have a penchant for drawing. Art classes abound! So why do we, as parents, hesitate to embrace the other things our kids with autism love: vacuums, desk lamps, and tape, oh my!

Your child’s passion is their strength. Use this as a map to help create meaningful short and long term goals. When we threw my son a birthday party at his favorite laundromat, we were sure our typical friends would shut us down. On the contrary, I have never seen such an inclusive community snapshot than being in the midst of washing machines and friends of all abilities. Laundry-related words have helped us kick start speech, challenging behavior, and sets our sights on a long-term goal my son has had for years: Washing Machine Fixing Guy. Recently, I was at our Capitol talking with a Senator who met with my son’s class earlier in the year to celebrate Autism Awareness Day. She told him she had a friend with an appliance repair shop and that he may be able to shadow a few days for some on-the-job training. We took his “silly obsession” as a toddler and have embraced it to the point that at nearly 14, he has an opportunity I would have never thought possible 10 years ago at diagnosis.


If your child uses a reward board or a token system, try using pictures of vacuums as you make your way to the desired reward. If you have an anxious child who enjoys the soothing glow of a desk lamp, write in a desk lamp for their desk during your next IEP meeting. A tape loving teen would be a valuable aide to the teacher always hanging up new things in their class. Heck, a LOT of clubs hang things up and down their school’s hallways! Find a club leader and explain the passion. Sure, some people will say no because let’s face it, we don’t live in an inclusive utopia. But Parents…some of them WI
LL say YES. That’s how you create change.

Every child deserves to be a thriving member of their community. One of the greatest barriers to an inclusivity is awareness. As parents, we want the world to embrace our child, but we need to remember that includes all of our child’s gifts, even the “quirky” ones. Start small and think big: you never know where you and your child’s puzzle-pieced road will go next.

#TuesdaysWithAutism – Big News From This Big Mouth!

This is another quick one, but that’s because #TuesdaysWithAutism was posted directly to the Facebook page, today.

Why you ask?

Because I had BIG NEWS! Wanna see?

LOOKIE

PS: My life will slow down after Christmas and awesome content will return. Until then, it’s going to be a little ragtag around these parts. Apologies!

Family: Holidays Vs. Special Needs Families

It’s the first #FridayFWords, and it synced up PERFECTLY with a piece I wrote for Oklahoma City Mom’s Blog that was posted this morning.

Now listen, let’s be honest with each other:

I have to post a little teaser and then lead you to the article via a link. Why? Because I’m contractually obligated to, that’s why! I have to trust you will follow the link to read more and man, it’s hard to get people to do that many times in bloggy world. So here I say, TRUST ME. It’s funny, it’s true, and most of all, you can pass it on to your family before that big get together that’s coming up. Here we go:

Dear Grandparents, Aunts & Uncles, and The Guy Your Cousin Always Has Hanging Around But You’re Not Sure What the Deal Is:

Hi.

It’s me. Your family member with a child that has additional needs. I thought we could have a heart to heart before we drown ourselves in Christmas Cheer and ham.

Every year during the holiday season, I watch two versions of social media unfold within my special needs community. There are the public family pictures with smiles and endearing anecdotes, and then there are the behind the scenes messages in our private groups. Whatever the story and scenario, it ends with mom after mom feeling hurt and isolated by the very people who are supposed to be loving and supporting her unconditionally:  The Family.

Follow the link for the rest of the article. It includes a pretty funny picture caption. What are you waiting for?! HAPPY FRIDAY!

 

Friday Haha – ‘Funny’ and Other ‘F’ Words

I admit it right now.

This is a bit of a bait and switch post.

In order to soften the blow, I tried to make the title smile-worthy and I threw in a phrase perfect for Michael Scott.

jim
This is a picture of Jim Halpert. If I ever make it big, please remind me to turn this into a plate of nachos or a cat tap dancing so that lawyers from nbc dont come after me for posting this without permission.

 

Annnnnyway.

You guys, I’ve hit a wall of un-funny. When I first got the idea to end the week on a funny note, I didn’t think about the idea long term. Coming up with something that’s going to make people that aren’t my sister laugh every seven days is harder than I thought!

No fear, I have come up with an alternative plan.

#FridayHaha is going out to pasture. The ole boy needs a good rest, a pretty view, and a handful of carrots.

#FridayFWords is the hip, new kid if by “hip new kid” you mean, “dorky neverold mom”. She shouts different F words every Friday like, #FOOD, and #FRIENDS, and #FAMILY and #FROADTRIPS (that’s road trips with an F. I just really want it to be a goal of mine to eventually travel enough that it becomes write-worthy). Friday posts will cover all of your favorite F-words occasionally still including #Funny stuff because I’m not a monster, geez.

Do you have some favorite F-words you’d like to see featured? Can you share them without your mother washing your mouth out with soap? Then let’s hear your ideas! Comment below or check out another F-word.

Friday Haha – The Football Game

I recently went to my first college football game as part of a writing assignment. We don’t watch a lot of sports in our house, so the first thing I had to do was convince my little guys that this was going to be super fun. When I enthusiastically told them about our plans, they both looked at me with blank faces. Lief simply said, “Nah, that’s okay. I will stay with Dad.” August just wore the same face I would wear sitting through a quantum physics class: pure confusion at the most basic level. Footwhat? It was obvious I was going to need help when I proudly declared that the seats were by “the front of the goal line or something” so I invited my mother-in-law as a “cultural translator” so to speak.

I can’t give away spoilers for the other piece I’m writing, but I can tell you about Lief’s take on the evening. First, we convinced him to go with the promise that it’s the one place that encourages you to be LOUD. For a child who needs a constant reminder about using his inside voice, he was sold. What we failed to point out to our brilliant and quite literal thinker was that it didn’t mean that you walked into the stadium and basically battle-cry nonstop until you leave.

The moment we sat down, the shouting started “OH YEAH BAY-BEH! OH YEAH BASKETBALL!!!! I MEAN FOOTBALL!!!!! GOOOOOOOOO! WHOOOOOOOOOOOO!” We had 40 minutes before the game started. The team was stretching and a few people were meandering around the field.

I tried explaining the art of the shout, but it was too late. “You said this was a place I can be loud and I am being loud” he protested. Fair point. My mother in law pointed out that if he screamed the entire time, he would lose his voice. Logic is the way of the Lief and it helped for about 10 rock solid minutes.

By the time the game actually started, Lief had cheered for stretching, a mascot, a man in a banana suit, a few commercials on the big screen, the national anthem (during and after), the flags, a baton twirler, both bands, a picture of the Ghostbusters logo,  the cameras, both teams, and a handful of other things I’m sure I am missing. My mother-in-law showed him when to put his pointer finger in the air and yell, “OOOOOOOOOOOOOOOO” (or something like that?) and quickly put his arm down when it absolutely *wasn’t* the time to do that. Through it all, Lief cheered and shouted and rallied. Our team was up? HORRAY TEAM! Our team was down? HORRAY OTHER TEAM! I was truly shocked he kept his voice and didn’t sound a bit raspy the following day. His vocal chords are impressive, for better and worse.

Besides walking away from the game and realizing I would absolutely do that again in a heartbeat, I also reflected on my loud-mouthed love. He is *everyone’s* greatest supporter and cheerleader, in and out of the stadium. He cheers on his brothers, his friends, and really anyone that crosses his path. When we went trick-or-treating, he complemented passerby’s costumes. He told some big boys in terrifying killer-clown masks that they did a good job scaring him. The boys just said, “uhhhhh thanks”, and Lief walked on, a kick in his step.

We constantly are reminding him to turn down his voice. Sometimes, he is so loud that I’m sure my ears will start bleeding. If I think about it though, 9 times out of 10, he is simply being happy, enthusiastic, and excited about whatever adventure he’s come up for the day.

The next time you have some tedious task to take of, channel your inner Lief. He will rally you through it all. “GO PAYING BILLS!!!’ “WHOOOO HOOOOO ROOT CANAL!!!!” “OH YEAAAAHHHHHHH BAY-BEH, CLEAN THE TOILETS”!!

You’ve got this.

lili

Tuesday’s with Autism – Community, Advocacy, and Advice, Oh My!!

It’s been a super duper busy month and posts have fallen a bit to the wayside, apologies. While there were not many blog posts, there was some good stuff over on the Instagram, Facebook, and Twitter pages (hint, hint). Now that we’ve gotten past that shameless self-promotion, let’s play ketchup!

Community

A few weeks back, I told you about Ty, the amazing community ally that we met at our local 7-Eleven. Word spread and Oklahoma’s 7-Eleven team reached out to thank us for the good news story (because let’s be honest, we NEED good news!) About a week later, Aiden received a package in the mail full of really neat 7-Eleven swag! There’s a general consensus that the Slurpee cup with the shark bite mold is the absolute coolest. So once again, thank you 7-Eleven! I cannot rave enough about your commitment to community!

 

Advocacy

A much longer post will be coming soon on this subject. For now, you have a chance to see some of the things we have been up to by searching #AidenattheCapitol on social media (again, links up there at the top, guys). Aiden is cutting his teeth at being his very own self-advocate, and we spent last week at the state Capitol talking to representatives and senators about the importance of fully funding and protecting programs that are essential for Aiden to thrive in this state. I have been accepted in a program called Partners in Policymaking, and I am learning so much about policy and advocating for people with disabilities. It is an international program available in many states across the US and a handful of other countries as well. I would HIGHLY suggest looking to see if your state offers a program and applying asap. It’s like taking the red pill and finding out about the Matrix. Minnesota offers a self-paced e-learning version that gives you *some* info, but not nearly what you would get by being fully immersed in the program. Still, check that out if nothing else. If you are a self-advocate or advocate for others, I’d love to hear what you are fighting for in your part of the world!

Advice

Oh my gosssssssssssssssssssh (<–key stuck, but I’m keeping it as I feel that exasperated about how long it’s taken me to circle back to this). A while back, a parent emailed and asked about eating challenges and whether they get better over time. I posted the question on Facebook and got some feedback from other parents. Lacey, a mama, a blogger, and my besty best friend is following along. Her little guy does not like runny textures. Instead, he gravitates to crispy or crunchy items. Rayne chimed in and said that her 10-year-old son has had the same aversions since he was two years old. She calls his diet, “the beige diet” (and I’m sure a lot of you are nodding in agreement, knowing exactly what that looks like). Tina also commented and said that her son “gets better, then reverts”. It’s like the old Paula Abdul song, “two steps forward, two steps back”.

As a parent, I watched Aiden gag and vomit at anything runny, mushy, or shaped in a circle for a few years (between 2 and 4 years old). This made things TOUGH when he had his tonsils and adenoids out. There was no rhyme or reason to it for us, but to him, these were absolutes in his life. It wasn’t just food either, I’m talking *anything*: play-doh, shampoo, glue….anything with that tactile sensation. One summer, he went to a speech camp (MDO with SLPs). I walked in to get him, and he was sitting there with some play-doh. I was gobsmacked, and no one acted like they had ever seen him be defensive of this texture. After that, it was just….better. Don’t get be wrong, he still doesn’t like yogurt and some other foods with a runny consistency, but he does eat some of them now. When he doesn’t want them, he can usually say, “no thank you”, but the occasional dry heave and/or vomit does happen. It’s hit or miss.

In short, the general consensus is “it varies by person”.

One thing you may try is picking one food to focus on. Start with just exposing it to your person. Maybe it’s on the table to the side of them, or right in front of them – do what you think they can tolerate. After a while (while = a week, a month….it varies) play a copy game and take turns touching it with your fingers. Reward this big time. After that is successful, try touching the food to your lips and have your child copy you. Next, have the food touch the tongue. After that, work on taking a bite and eventually swallowing the food. Again, it could take a week, it could take a year, but that’s one possible way to at least lessen the aversion. Sure, maybe they never eat mashed potatoes, but I know there was a time, I wished upon wishes, that we could sit at a Thanksgiving table without Aiden throwing up everywhere. So, you know, figure out your goal and go from there.

It’s Halloween and we are heading out to trick or treat here shortly. I have a ninja, Spiderman, and washing machine looking for candy this year. Can you guess which one is Aiden? Of course you can. What about you? What costumes are you and yours sporting this year? let me know!