The Case of the Missing Screwdriver and the Loud Pants

How do I even begin to post what has been happening in our journey? Let me start by saying that puberty and middle school are not fun for anyone. However, this particular chapter in Joshua's life has been true agony. There are a few things you should know about Joshua in order to best understand the severity of the struggles he's been facing. He has 3 major diagnoses. He has Autism, Fragile X Syndrome, and Episodic Ataxia. It's sometimes hard for even his doctors to know which of these cause each of his symptoms. Honestly, it doesn't really matter. The fact is that because of all of these things combined, Joshua struggles with pretty significant intellectual impairments, sensory processing problems, bowel and bladder incontinence, frequent ear infections, seizure disorder, high anxiety, mobility problems, falls, choking, and a ton of other things. I know you probably don't want to read a novel, so I won't add everything, but this might give you some insight into what Joshua faces on a daily basis. 

You probably remember your own transition from elementary school to middle school. If it was anything like mine, it likely isn't your favorite memory. This huge change is a BIG DEAL for every kid! It involves leaving the comfort of a place you've been for 7 years, and going somewhere new. You have to change classrooms for each class. Who will you sit with at lunch? You need to remember where your locker is...and don't forget the combination! The teachers expect so much more from you. Plus, your body is totally out of whack! UGH!!! This short list makes me want to hug a middle-schooler. Needless to say, I definitely wouldn't want to revisit the beginning of 7th grade, and I'd be willing to bet most adults would agree with me.

For Joshua, this transition has been less like going to a different school and more like moving to another planet. Until this year, he had been in what Jefferson County calls an SSN2 lab. Basically, it was a wonderful place where he was in an enclosed classroom for most of his day. There were very few kids in his class in comparison to a typical classroom. He had the same wonderful teacher for all the years he was there. He also had most all the same classmates. They became his friends, his team, his tribe. School was a safe, happy, comfortable place and Joshua LOVED being there. However, this year he was placed in a school that did not have a center program like the one he had become so accustomed to. The reason for this is a little lengthy, but long story short, the district places a LOT of emphasis on a child's IQ score when they are evaluating placement options. Here's the kicker with Joshua. Part of his IQ is fairly high. However, other parts are beyond low. It's very hard to know how to interpret his scores. Because of this, on paper, Joshua looks like he might be able to function on a much higher level than he actually is able. SO...blah, blah, blah...legalese, evaluations...blah, blah...he got placed into a mainstream school setting. Sorry, I know that got a little dry and lengthy. Let's just say that it hasn't gone well...AT ALL!!! We are now in the process of trying to convince the district that he needs a center program. It's a battle. I'm hoping for the best, but preparing for the worst. I'll keep you posted as I know more.

On top of all of the typical 7th grade stuff, he has had to deal with big issues like not being able to read or write. His working memory is basically non existent, so he has no idea where he's supposed to go from period to period. He has poor dexterity, so he can't open a combination lock (even if he could remember the combo). Add to that his sensory processing problems. For him, EVERYTHING is much louder than for other people. Lights are too bright. Colors are too vibrant. Smells are more pungent. Basically, all of his senses are on high alert and his brain isn't wired to process all of that information in a way that he can understand or tolerate. When Joshua gets overstimulated, he has seizures, vomits, has accidents, cries and shuts down. And now we've added something new to his coping mechanisms. Let me tell you a little story...

A few days into the school year, I went in to wake Joshua to help him get ready for his school day. Imagine my surprise when I walked into his room to find that he'd taken his bedroom door apart. And, that's not all! He had removed every single handle to his dressers and desk. He'd also taken apart his fan. Operation Find the Hidden Screwdriver commenced. For the entire day, our whole family scoured our house to find the screwdriver he'd used to take apart, well, EVERYTHING! Luckily, Faith is the best finder of all things lost. She found a little tiny screw driver hidden under his bed. Crisis averted? I thought so, until the very next morning I went in to wake him and found that he'd taken the plates off of the light switches and had taken apart his DVD player...with his FINGERNAILS!!! A few things crossed my mind. #1. WHEN is he doing this? My room is next to his. I keep a close ear out for him and I check on him multiple times before I go to sleep. #2. WHAT is this doing to help him? How is it helping him to take everything apart? #3. This is SO dangerous! How can I help him safely take things apart so that he can cope without having the house implode or burn down? #4. When you go to Lamaze classes, they don't tell you to prepare for this! I NEED A PARENTING MANUAL!!!

Anyway, let me continue by saying that the staff at his school has been fantastic. They have done everything possible to help him cope, but because of the sensory stuff, he eats by himself in the office everyday. He simply cannot tolerate the cafeteria. He goes into the school early to avoid the crowds and noise outside. He leaves his classes early to avoid the noise and crowds in the hall. He was taken out of his art class because it was too overstimulating and put in the Deaf and Hard of Hearing program. BTW...he isn't deaf or hard of hearing. However, this was the best solution to the over-stimulation problem, and again, I am really grateful that his school staff has been so accommodating. The issue is, though, that he still can't really make friends in that group because those kids don't hear and Joshua doesn't speak sign language. Basically, because of his issues, he is lonely all day everyday. 

I literally could go on and on. I could write an entire novel, but I won't. The bottom line is that this isn't working! I consider it an actual miracle every single day Joshua makes it on the bus. This morning, I really didn't think that was going to happen! Holy crazy morning, Batman! First, I laid out Joshua's outfit, like every other day. I turned around to start making his lunch, then turned back around to find that the pants I'd laid out were missing and there were shorts in their place. I replaced the pants, put away the shorts and went about our routine. I went to grab a jacket, and what do ya know, the pants are gone and the shorts had returned. The bus was going to be here any minute, so I asked Joshua what had happened to his pants. He told me he COULD NOT wear those pants because they are TOO LOUD! Of course, this kid has grown so many inches since last year that he has no pants that fit. We grabbed a few pairs of these terrible, horrible, loud pants, but that's what was all that was available this morning. He begged to wear his PJ pants. He begged to wear shorts. LORD...GIVE ME STRENGTH!  (BTW...if any of you happen to know of anywhere that sells men's size medium activewear pants that have an elastic waistband, aren't shiny, itchy, loud, strangley, and don't have tight ankles, you might just be my new best friend.)

A Lot on My Mind

 

 

So, you may have noticed that I have been strangely silent in the past couple of months. If you know me well, you know that silence is far from my usual MO. Well, as you can see from the picture above, I majorly injured myself! Shocker, I know. LOL! Long story short, I was sparring in karate and ended up breaking my pinky finger in two places and also broke a bone in my wrist. It was incredibly painful, but moreover, it has been SO stressful!

 

Because of the injury, I ended up losing my job and my ability to do many of the things I really enjoy doing such as karate, rock climbing and blogging (typing) to name a few. For a few days, I threw myself a MAJOR pity party. It wasn't cute at all! I pouted...a LOT. I'm grateful that I was home alone for most of this ugly period because I am not at all proud of it.

 

However, after a few days, I decided to try and make the best of the situation and spend some real time in introspection and prayer. It is sad that it took a major accident to get me to slow down long enough to spend some real time with myself, thinking about who I am and who I hope to be.

 

There are many things that I hope to get to discuss in the near future, but the one most major thing that I have learned from this down time is just how grateful I am for my overall health. I couldn't help but to think about people who are facing far harder injuries, illnesses and disabilities than I. Specifically, I spent a lot of time thinking about my son. Here I was, literally pouting over not being able to live as fully as I normally do, while my own little boy kept getting up every single day with a smile on his face. For him, and so many others, a cast, surgery, therapy and time will not "fix" the things that hold them back. I do not mean to say that I can even come close to relating to having a serious disability or illness, but I can relate to struggling to meet my own simple needs. For instance, it would take me about an hour to take a shower, simply because I had to do everything one handed. It was incredibly challenging...and FRUSTRATING!

 

Seemingly simple tasks like dressing, cooking, cleaning, and putting on makeup were often so stressful that I chose not to do them! Like I said before, it wasn't pretty. But every time I struggled to zip a pair of jeans or to switch laundry from the washer to the dryer, I was again reminded that my situation was temporary. I would eventually heal.

 

So, what does that mean for my son and every other person who will not? To me, it created an even greater sense of appreciation, awe and inspiration. What takes a "normal" child just moments to do, my son will struggle with for hours. But you know what? He NEVER gives up! In fact, I've never even seen him pout. To him, working harder and longer is a part of who he is, even when all of the other kids who don't work nearly so hard surpass him. And instead of being bitter or resentful, Joshua celebrates the successes that others are having that he is not. It is truly inspiring!

 

While this injury has been far from fun, I have learned to be grateful and a whole lot more humble knowing that I have it so much easier than so many people, including my sweet little boy. It's amazing what I've taken for granted without even knowing I was doing it. It has definitely given reason for pause.

 

 



 

 

 

I've Got Your Back!

You may have noticed I haven't posted lately, and I thought I would explain why. A couple of weeks ago I broke my arm and hand in 3 places and injured the ligaments in my wrist. For those of you who have known me for even a relatively short time, I am certain that this comes as no surprise. It's been a running joke in my family that if something weird can happen, it will happen to me. I most certainly have earned that reputation! I could tell you dozens of stories about strange illnesses and injuries, but I won't bore you with the details. Needless to say, this broken arm fiasco has had me bummed out! Thank goodness it is my left arm, and not my right. I have to admit, though I am NOT proud to do so, that I have been throwing myself a little pity party! Whiny...table for one!

However, I woke up this morning and decided that I would spend some time focusing on something that I truly could not live without. My support system!

I have had many times in my life when I wondered how I would possibly survive the difficult situation I was facing. From losing a close friend in high school, to broken hearts, to my own electrocution and subsequent health problems, to our Fragile X diagnosis and life, I have needed the support of many people. There have been days...lots of them, in fact, that I wondered how I would have the strength to put one foot in front of the other.

I am certain that every single person has felt the weight of the world on their shoulders at some point. Sometimes life doles out heartbreak that we simply cannot bear alone.

Here in lies the blessing in disguise. When I have been at my lowest, I am reminded just how loved and supported I am. First, I have the power of prayer, which connects me to my Creator in a very real and powerful way. When life gets darkest, He is nearest. I also have the incredible blessing of my family. Like all families, we don't always see eye to eye, but when one of us is hurting or struggling, the others are always there. I remember as a kid I would fight like crazy with my siblings (I am the oldest of 5). We would argue, ignore each other and even not speak for days on end. And that was ok, BUT let me tell you, if someone else would pick on a sibling, the others of us would come to the rescue every single time. There was no fight too big or important to keep us from being there for each other. Also, I have to mention that I am beyond blessed to have a mom who is loyal and loving to her core. I couldn't have hand-picked a better mother!

Not only do I have an incredible immediate family, I also have extended family that are there for me, through thick and thin, no matter what! Growing up, I spent lots of time with these people. My extended family is enormous! My mom is one of 9 children in her family and most of her siblings have multiple children and now grandchildren. You may think that one would get lost in the crowd or that everyone would be so busy raising their own families that we may not be close. The opposite is, in fact, true. I have cousins that feel much more like siblings and aunts and uncles who have stepped into parent roles for me when I needed them. To say I am blessed is an understatement!

And while I have enormous support from my family, I also have some of the most loyal and incredible friends who have stepped up for myself and my little family over and over again. I am so grateful for each of them!

In the past year, I have had the honor and privilege of becoming a part of not only the Colorado Fragile X community, but also the national and international community as well. There are some really hard things about having a child with a major disability, but being a part of such a loving and supportive community is not one of them. I have never met a group of people who is so present and active in the love and support of one another.

The long and short of it is that we, as humans, are not meant to face life alone. It's just too hard that way. So, whether your support system is made up of 2 people or 2000, take advantage of every single opportunity to love and be loved by those people. No matter what happens, you know that someone's got your back and you have theirs! And really, what could be better?

Difficult Decisions and a Rock Star

One of the many things you don't think much about before you have children is making tough decisions on a very regular basis. At least it wasn't something that crossed my mind! But then you have a perfect little bundle of joy placed in your arms for the first time and the reality really sinks in. You are now responsible for another human life. When I realized the sheer magnitude of this responsibility, I literally had a full blown panic attack!

Parents worry about nearly every single choice they make for their kids. What should I feed my child? Should they be involved in extra curricular activities? If so, how many? Where should they go to school? Do I have a fire ladder from the upstairs bedrooms? Have I adequately trained my kids how to use it?

These are about a 1000th of the thoughts that run through my mind every single night! And as my kids get bigger, so do the worries! They neglected to mention that at my Lamaze classes. Nowadays I worry about my kids' friendships and the fact that every boy in the 5th grade world, seemingly, thinks they are in love with my daughter. Should I get my concealed weapons license? Or maybe I should get a building permit and build a tower onto my home. Rapunzel's parents may have had the right idea! I also worry about the future and what that will look like for Joshua. What if he is never able to live independently? I'd be stoked to have him live at home for ever, but who would care for him when I kick the bucket? The list of concerns is pages and pages long. I'm certain that every single parent can relate in some capacity.

But tonight I want to tell you about a super hard decision that had to be made a few months ago, and how it has worked out so far. Over this past summer, Joshua was struggling more and more everyday with severe anxieties. I don't mean he was just a little nervous about things. It was to the point that even speaking to someone was making him vomit. He was in tears daily and was getting too anxious to even talk to me! It was heartbreaking. After weeks and weeks of vomiting, crying, toileting issues and meltdowns, I turned to the amazing support system of my Fragile X community. SO many FX parents shared that their FXer struggled in similar ways.

Now here is where the difficult decision had to be made. It was suggested that I have Joshua examined to discover if the use of an anti anxiety medication would be appropriate for him. Again, they don't tell you that you would have to make these kinds of decisions in What to Expect When You're Expecting! I agonized over the sheer thought of putting my 8 year old on these meds. Was it responsible to put these pills into my child's body? Would the side effects be severe? Would meds make my child a zombie? But on the other hand, would it be unkind not to try medication if it could significantly improve my child's life? I tell you, the number of tears cried over this choice could have filled a bathtub.

After days of researching, crying, praying, and consulting with my amazing support system of family and friends, I decided to give the medication a try. Ultimately it came down to giving Joshua the very best chance at happiness. I figured that if it didn't go well, we could take him off of the med. So, in August Joshua started on the medicine.

Fast forward to today. My little man is not only talking more, but he is laughing! He is making friends at his new school. Not to say there haven't been any side effects, but for the most part the difference is night and day. But my personal favorite thing that Joshy now does is SING. He sings from the time he wakes up to the time he goes to bed. Just yesterday he was singing, "We wear short shorts, flying purple people eater."

This was the musical magic created by my Fragile X Man just this morning. When I asked why he was singing he told me, "My happy heart just wantin' to sing!" I will take it!

I'm not saying that medication is a good choice for every child. Not at all! But I really wanted to share this because sometimes the really tough choices actually do turn out for the best. So, take hope all you parents that have a million worries spinning through your heads. You are great parents who love your kids. We will win some and lose some, but the bottom line is that there is no bad choice if it is made with love, care, and the best intention for your child. Keep it up all you super parents! You are incredible.

Autumn is AWESOME



I love living in Colorado for about a million reasons. There isn't a single season that doesn't offer lots of opportunities for fun! I agree with my kiddos when they say that every season is their favorite.

Today, we got to enjoy one of our favorite autumn traditions. Not far from where we live are many pumpkin farms. They offer all types of activities such as picking pumpkins, corn mazes, bouncy castles, petting zoos and hay rides. All of these are a blast.

This year, more than ever before, BOTH of my sweeties have really been able to enjoy this experience. In years past, the crowds, noise and overall hubbub was too much for my Fragile X Man to handle. We would still go, but often times we would have to leave early. Today though, Joshua was SO excited he could hardly contain himself. We pulled up to the pumpkin patch and he literally JUMPED out of the car, and ran through the field as happy as could be. He went from pumpkin to pumpkin trying to decide which one would be the very best.

On days like these I am reminded of just how far we have come and I am beyond grateful. I recently read a quote that said, "Life is not comprised of milestones but moments." I apologize that I don't remember who originally said the quote, but I feel that it perfectly sums up our experience. While Joshua may struggle to meet developmental milestones, we have been blessed to have so many amazing moments together.

We decided to make a "fall fun" checklist and here are a few of the moments we intend to create this fall.

* Visit the pumpkin patch.
* Paint our pumpkins to look like the Teenage Mutant Ninja Turtles.
* Bake and decorate sugar cookies.
* Hike in the mountains to best enjoy the fall colors.
* Rake leaves and jump in them.
* Help with grandma's haunted house.
* Drink apple cider.
* Trick or Treat.
* Bob for apples.

What does your family have planned? Whether it's carving pumpkins or collecting leaves, creating moments together makes every season one to remember. Happy Fall, friends!

Second Breakfast: It's Not Just for Hobbits

When something especially funny happens I really enjoy sharing it with you! Today offered some serious giggles.

Joshua and Faith came running in from the bus this afternoon. As always, backpacks, shoes and jackets went flying as they ran to wash their hands so they could eat their snacks.

After everything had been picked up and hands had been washed, I sat them down at the table and gave them their fruit and milk. Most days, this is the time when I hear most about their day. I asked, "How was your day?" Faith answered, "It was great!" and continued eating. Then Joshua looked up and said, "Mama, I like my day, but I needin 50 dollars." WHAT? "Joshua" I asked,"why on Earth do you need 50 dollars?" He smiled at me and said, "I needin it for lunch." I explained to him that I had already paid for all of his lunches for the year. He got really quiet and looked down. I asked, "Joshy, tell me why you need more money." He replied, "it for the breakfast, Mama."

You should know that I make the kids a delicious and nutritious breakfast everyday before school. "Joshua, you've been eating another breakfast at your school?" I asked. "Yep, all the days" he replied.  Oh my! So, come to find out, my Fragile X Man has had second breakfast every single day of the year and his mama didn't have a clue. I suppose I should have explained to him that if he ate breakfast at home, he shouldn't eat breakfast at school.

So, for more than a month now, second breakfast hasn't only been for Hobbits!

It's a Date!

There have been a lot of serious issues that have come up lately, and the blog has been more serious than I like it to be most of the time. So tonight I thought I'd tell you about something that is one of my favorite things in life. Dating my kids!

I realize that may sound weird. You date your kids? YES! I have found it to be so important to spend special time with each of my kiddos, just the two of us. It is the time when I best get to really know my children.

Dates with Faith are always an adventure. We have done some of the girly things like getting our nails done at the salon, but as Faith has gotten bigger, she nearly always chooses to have adventures. She likes amusement parks and hiking and rollerblading. I love this about her. Life is her oyster and she LIVES! A little over a year ago, she and I got into rock climbing. We took classes to learn how to do it safely and as soon as we hit that wall, we were both hooked! So, lately when we have our "dates" we climb. Last Monday, our special night, we were driving to the gym getting ready to climb and Faith was talking up a storm. She told me about school and friends and a cute boy and orchestra practice. It is fantastic to get to hear what she thinks about things when it is just the two of us. She opens up in a way that is harder to do on the "normal" days. Needless to say, I love that time with her and look forward to it!

 

 

Dates with Joshy are very different. Joshua is my little gentleman. He prefers to do actual "date" activities such as dinner, movies and frozen yogurt! We have our dates on Saturdays. When it is just him and me, he is far quieter than his sister, but he tells me about the things that really matter to him. Though he says much less than most kids, his words are powerful because he has to really work to use them. He is also so thoughtful. He holds the door open, helps pull out my chair, and always holds my hand. I am so in love with that little man! Just this morning, Joshy came to me and actually asked me out. It was the sweetest thing. He said, "Mama, what day is it?" I told him it was Monday. He started counting on his fingers. Perplexed, I asked him what he was counting. He said, "I needin to knowed how many days till our date." I told him that Saturday was still quite a few days away. His face sank a little, then he said "I take you to a special dinner? It be so special!" It chokes me up when he says such sweet things. Of course I agreed! He always brings money from his piggy bank to treat me. He will dig around in that bank and put a quarter in his pocket so proudly! Whoever gets to marry him will be one very lucky woman. 



I share these things because I feel that spending time with our kids one on one is extremely important. Not only does it create a strong bond, it also teaches you things about your child that you may not know otherwise. I would encourage every parent to try and make time with each child, even if it's just once a month for half an hour. Although it is hard to squeeze this time into our super busy schedules, it is an investment that pays enormous dividends for both us parents and our sweet kiddos!