Our Journey Along the Autism Spectrum…

When I send my boys out the door each morning and put them on the bus, I always wonder how their day is going to be. Will the bus ride be safe for them? Will they get teased for stimming by the other kids? Will the bus driver and aide be kind and patient with them? I can only pray and hope for the best, because I can’t go with them. Giving up that control is not easy for a special needs parent. We are use to people misunderstanding our kids, and usually we are right there to protect them. What happens when we are not there? For those of us with nonverbal kids, that is something that we will always wonder.

Most children can come home and tell their parents all about their school day, but not our kids. We have to rely on the notes sent home from the teacher to see how the day went. If the teacher is in a hurry, then we may not get any notes some days, and we are left to wonder how the day went. We have to worry about things that other parents never even have to think about! Like who is helping our teenager in the restroom? Are they being mistreated in any way? Is their integrity being upheld and are they being treated kindly? They could never tell us if they weren’t. Yes, even verbal children with autism are not so great at reporting daily details back to their families, and the nonverbal kids can’t say anything at all.

As teachers of our special kids, we know you have a challenging job to do! We understand because we have a similar job to do too since we live with and raise them. We face burnout sometimes just like you. Our days never stop, and most of the time we are up half the night too because our kids don’t sleep. This is your job, and you chose a special Ed classroom to teach in. Most of us admire and respect you for that! It’s a hard road to go down, but we know firsthand how rewarding it can be. Please remember why you chose this profession when the hard days come. Don’t go on Facebook and tell the world how awful special needs kids are to teach, and please (I beg of you) don’t ever take your frustrations out on the children. They are facing so many challenges themselves every day, and they don’t mean to make you upset and angry. When you stay calm and handle their behaviors appropriately, it is so comforting to them and it brings peace to their parents as well.

Going to school as a child was hard enough. Can you imagine going to school and not being able to speak? Being the weird one spinning at recess, or having a blazing meltdown because you simply can’t control the body that you are in? Now imagine everyone getting mad at you and treating you poorly because of it. Sadly, those things still happen in far too many schools these days. Teachers sometimes take the behaviors personally, especially when the behaviors become physical. We know how awful it is to be hit, kicked and screamed at during a meltdown. We know the feeling of fear mixed with adrenaline, and we will be dealing with it for the rest of our lives as the parents. We also understand that these meltdowns overwhelm and frighten our children. In fact, it might surprise you to know that even when they are at their raging worst we still feel compassion for them. Why? Because we know that this is not who they are on the inside. There is SO much more in there besides the anger and overstimulation that often spills out. We hope you see the good in them too!

We are all trying our best here…at least I hope that most of us are. There are good parents and bad parents, just like there are good teachers and bad ones. I’m sure that as a teacher you have seen your share of poor parenting over the years, but I hope that you will always try your best with these students despite their difficult home lives. I consider myself to be a good parent- I’m very involved and I am an outspoken advocate for my children. Please do not take my advocacy the wrong way! I know you are not the enemy, but I do feel the need to ask a lot of questions and look into everything. You are not the first teacher my boys have had, and you will not be the last. I need to stay on top of things to ensure that my boys are learning and being treated right. Don’t take it personally, but I don’t know you well and I am only looking out for my children’s well being. As a good parent, I believe you’d do the same if you were in my shoes.

My approach may be different than yours would be if you were the parent, but please try to respect that. If I put my child on a special diet that you think is silly, please respect my wishes anyway and don’t feed him things that are not allowed. If I disagree on medicating my child for behavioral reasons, please try to understand that I have done my research and I have my own reasons. I want us to get along so that our working relationship is a pleasant one. Your job is about so much more than just teaching reading, writing and arithmetic, and I realize that better than anyone. Most teachers don’t have to deal with changing the soiled pants of a 12 year old, but then again most parents don’t have to deal with that either.

Thank you for teaching my child. Thank you for every time you have diffused a meltdown calmly, dealt with a difficult behavior peacefully, and used positive behavior supports instead of adversives. You are appreciated more than you know, and I pray that you always treat your students just as you would want someone to treat your own child. Your kindness and understanding will go a long way towards making a difference in this world!!!

I have long had my own sensory issues, especially regarding unpleasant odors. Changing diapers was never my favorite thing, but I don’t suppose I am alone in that. However, I never thought I’d have to deal with poop beyond the toddler years. A baby is one thing, but a child, teen or adult is MUCH stinkier…TRUST ME!

One day when Nicky was three, I got my first taste of “the poop show”. The day started out as all other days, but it got progressively worse when I went to get my son up from his nap. Having always been grateful that MY autistic son didn’t smear his own poop, the incident caught me off guard. He really dropped a bomb on me…a BIG bomb! There was poop all over him, his crib, the walls, and all the bedding. I was shocked! (And hoping it was going to be a one time thing, but no such luck). Thus began a pattern of poop handling and smearing everytime I failed to recognize his b.m. and change it within the first five seconds or so. Yuck….

I became a master at diapering him backwards, securing the tapes with duct tape, and even dressing him in backwards overalls to prevent this disgusting behavior. Many times these things worked, but sometimes my little Houdini managed to get the crap out anyway and paint everything in sight. During these early years of poop smearing, I had four young children (ages 7, 4, 3 and 1 1/2) and they ALL had some type of special need, three of them being on the spectrum. They were not easy years, as I still had plenty of growing to do myself, believe me!

Somehow we waded through the feces, and even managed to potty train the boys fairly successfully. I thought we were done with the poop messes, until I had my fifth baby, Jacob. He too was diagnosed with autism after regressing and losing his speech at around 18 months. He fell in the moderately autistic range (Nicky is more severe, and my other two are high functioning) but he quickly claimed the title as the king of poop. Jacob came with MAJOR sensory issues, and he relished the feel of anything gooey. He became the poop smearing extraordinaire, and suddenly no surface was safe! This behavior continued until he was around 5 years old, and it was one of my least favorite things to deal with. One day our respite provider called me into the room to behold a huge and heinous mess! Poop was smeared all over our television, couch and floor in the living room. AND I MEAN REALLY SMEARED…not those little streaks that some people freak out about. The screen was covered and so was my child. Anyone who has ever dealt with leaky gut poo knows how smelly and disgusting it can be. (Not that regular poop is a picnic, but this is far more repulsive.) Anyway, we were able to clean it up, but it was not a pleasant experience. Nothing seemed to dissuade him from spreading his poop all over every accessible surface in our house. Although it was repulsive, the body smearing was far grosser to me. I still have no idea how a sensory defensive child could stand having crap on his face and in his hair. It just doesn’t make any sense to me!

Thanksgiving day was another craptastic day that stands out in my memory. We had just sat down to a wonderful homemade meal, and I was saying the blessing. “Dear God, I have so much to be thankful for! Thank you for my husband, my beautiful children, and our fabulous meal…” And then I heard it. My oldest son let out a bloodcurling scream, and was pointing towards the family room in horror. I turned to see my son  Jacob standing naked, covered head to toe with (yup, you guessed it) POOP. Not exactly an appetizing appearance. I threw my hands up in the air and yelled “Nevermind Lord, suddenly I’m NOT thankful for my children anymore!” And then I did what all sane mothers around the world would have done. I started laughing hysterically! Deep, body shaking guffaws erupted out of me in an uncontrollable fashion. Even though it was terrible, I was able to find a little bit of humor in this unfortunate event, and to this day it is a funny family memory.

Once Jacob finally stopped his awful poop smearing behaviors, I thought for sure that I had seen the end of this fecal fest. And then Nicky started doing it again! I was quite discouraged since he had been “done” with this for awhile, and I still don’t know why he started doing it again. Much to my dismay, the pattern has continued over the last several years, and it still occurs to this day. Nicky is 12 now, so it brings things to a whole new level. He’s a BIG 12 year old too, about 180 pounds and growing. And he never has a solid  b.m. because of his horrible gut issues. So you can imagine what this is like for us lately! I have tried different discipline tactics to stop this sickening behavior, but none of them have been entirely effective at stopping the neverending river of poop. He has done it in the tub, the bathroom sink, and the trashcans. Sometimes he hides poopy clothes in our hamper, and boy is that a treat to discover! It happens so often that we have decided to monitor his bathroom use as much as possible. We strive to give him some privacy (after all what 12 year old boy wants their mom following them to the loo?), but we have to keep close tabs or else we will be cleaning a big stinking mess. Yesterday, I had to bleach the bathroom from top to bottom in fact. It was on the shower curtain, sink, counter, floor, and all of the towels. It took me about an hour to defunk the place, only to have him try it again later on. Fortunately, I caught him in time so I didn’t have to resanitize everything. I probably have the cleanest bathroom in town…today anyway.

All of this poop has become a humorous  topic of conversation in our family. We try to see the bright side, so we even make up songs and jokes about it! Although my kids will think I’m a lunatic for sharing this little secret, it keeps us sane to find the humor in otherwise depressing situations. Therefore, I will share some of our silly songs with you, my fellow crap cleaners!

Silly song #1: “Plop a Loggie”

This one is sung to the tune of the popular “Paparazzi”

“You and I know we all have to go potty…
Plop a…plop a…plop a loggie!”

(There’s more words but I wouldn’t want you to think we are TOO weird or anything…)

Silly song #2: “OCD”

This one is easy and is sung to the nasty old song “OPP” (since we have tons of OCD in the house possibly contributing to the poop behaviors)

“You down with OCD?
Ya you know me…
You down with OCD?
Ya you know me…”

Silly song #3: “There Can Be Big Brown Logs”

This one is particularly gross and sung to the tune of Whitney’s “There Can Be Miracles”

“There can be big brown logs,
If you just squeeze…
My poop is fresh and its hard to clean.”

Silly song #4: “The Lion Poops Tonight”

This is sung to the classic song, “The Lion Sleeps Tonight”, and is especially funny because our two year old made it up…ready?

“In the jungle, the mighty jungle, the lion poops tonight!
Hey, hey…awimbawe, awimbawe”

(Yes, we have a jungle theme bathroom so its entirely appropriate,  don’t you think??)
Okay, that’s it for the poopy humor. If you don’t find it funny, then you probably don’t live with a poop smearer! If you do find it funny, you have probably been living with one long enough to make you just a little bit crazy :-p

Here are a few tips that may or may not help with curbing the stinkiness:

1. Provide crazy foam in the tub to delight your child’s sensory seeking system. Sometimes playing with squishy stuff other than poop helps them to cut down on smearing.
2. Play with playdoh, silly putty and other tactile stimulating items.
3. If you have a younger child, diaper them backwards and use a diaper cover or strong tape to hold it shut.
4. At night, put pajamas on backwards so they snap or zip in the back and are harder to undo.
5. Let them paint with finger paints, pudding, or whipped cream to further indulge their sensory seeking.
6. Monitor bathroom habits and keep a close eye on them when they are using the toilet, or when you think they may have a dirty diaper CHANGE it promptly.
7. Use a visual baby monitor at night so you can see if they get up to engage in this behavior.
8. Try not to freak out or laugh (yes, Thanksgiving was a huge fail on my part), as it gives them a “payoff” for their behavior. Granted my sons could care less about the attention and still do it no matter how I react, but some kids are attention seeking at times. Only you know your kids and can determine if this is the case.
9. Realize that in most cases, it doesn’t last forever. My other son has not resumed poop smearing after quitting around age 5, so there is hope. Even though my 12 year old has been smearing again, I still believe it will stop someday.
10. Try to see the humor in it if you can. You may lose your mind otherwise, so go ahead and join us in our crappy jokes! Make up songs and sing them while you are cleaning up the dreaded mess. It makes things just a little more bearable.

Everyone knows that being a teenager is no picnic, and everyone that has had the privilege to RAISE a teenager knows that it can be a uniquely challenging experience. Some parents dread those years, while others look forward to them with uncertainty and excitement. I guess I have always fallen somewhere in between.

Back when my older kids were young, I was fearful of the future. Three of them had just been diagnosed with autism in succession, and I was left wondering what the future would bring. The thought of a 13 year old still in diapers or unable to speak made me shudder. Everytime I contemplated the uncertain future, I felt great anxiety. I wondered how the kids would be once they reached that narrow bridge to adulthood. Our lives were anything but normal back then, and if I let my mind run too far ahead, I’ll admit it was a scary place to go.

Fast forward about ten years. My older children are 16, 13, 12 & 10. Two teens and two preteens are officially in the house! Along with teenagehood came new attitudes, discoveries, and issues. Let’s face it, teens are a rare breed. They cry for no reason, question everything you say, and sleep entirely too much. And yet they are wonderful in many ways as well. It’s fascinating to see these unique people that you (and the Lord) created, turning into functional adults. They are interesting, inspiring,  and challenging all at the same time. I have seen my sweet little boys react like angry grown men at times, and my daughters think they are already grown. Oh, and of course they all know EVERYTHING!

Things have also changed in terms of their special needs over the years. Adhd in a young child looks very different than in a young adult. The Ocd has mellowed out some, and the tics wax and wane with the seasons. Sometimes nothing makes sense. People are less understanding when an older child has a public tantrum, and the expectations are raised as well. It can be tricky for a parent to transition from parenting a child, to parenting a mini adult. Believe me, they’ll tell you where you are going “wrong” so to speak…

Watching Nicky grow and change has been especially interesting. He is my most severely autistic child, and life was already hard for him in so many ways. He started puberty early, at the tender age of ten, probably because he is so heavy (and chubby kids usually start  earlier). Anyway, the rapid hormonal changes brought more unexplained crying spells, which were heartwrenching for me. He couldn’t tell me why he was crying, and it hurt my heart not to be able to help him. The changes also brought some acne, a thyroid condition, and more public stares. Yes, those have been the worst to deal with. He is a big boy at the age of 12. About 5’5 and 180 pounds, but the way he is growing I expect him to be taller than me very soon. He can no longer be put in a stroller when we go out to prevent wandering. When he stims and babbles in public, people LOOK. And not in that friendly way that they use to look at him when he was a wee lad in the shopping cart. They look at him like he is a weirdo or a freak, and that breaks my heart again every time. They don’t see his beautiful blue eyes or his contagious smile, instead choosing to focus on his autistic behaviors. There is less acceptance in the good ol’ USA than one would like to think…

It occurred to me the other day when we were out on our weekly shopping trip, that the stares were never going to go away. In fact, I assume they might get worse once he reaches 6 feet tall like his daddy (who is actually 6’3 if you want to be exact). I feel sorry that he has to live with the insensitivities of others for the rest of his life. I’d like to think that I could protect him forever from the heartless attitudes of rude strangers, but I know this is not the case. Unfortunately, my growing man-child will have to live with being stared at, whispered about, and judged for the rest of his life. Try that one on for size. Yes, it stinks, doesn’t it?

Now that we are at the place I once dreaded the most, I can honestly say that it’s not so bad. We have overcome so much, that overcoming the ignorance of others is just one more hurdle. Nicky is potty trained, is learning to communicate with an Augmentative communication device, and has a wonderfully unique personality. Sure, he still does the poop smearing thing sometimes, but there are so many other things to celebrate that I don’t let it get me down.

It is a special relationship between a mother and her nonverbal son. I have grown use to anticipating his needs, and helping him in all areas of his life. I have to accept the fact that I may be washing his hair still when he is a grown man, and he has to accept the fact that I may be the only woman ever in his life. Its a journey I never knew I’d be taking, and it has changed me in more ways than anyone could ever imagine. These days I look forward to Nicky’s adulthood with the same fearful hesitation that I once had when considering his teen years. I know it won’t happen overnight, and when it does, I believe God will have prepared us both just as He has done for this season in our lives.

This is the post I was hoping I would never have to write. The mere thought of someone bullying my children use to make me shudder! In fact, it still does. Sadly, I have had to deal with it more times than I would like lately, and it has left me to ponder a few things.

For starters, how is a bully created? Is it just poor parenting? I would be tempted to think so, but I know that is not always the case. I have seen siblings who are as different as night and day! One kind and gentle while the other is rude and abrasive. So if its not always just poor parenting, I’m not sure what other factors may contribute to the making of a bully…but I do know that they must be stopped!

Teasing and bullying comes in many forms. My ten year old daughter is often teased because she can’t spell or read at grade level. She pronounces words wrong at times, and misunderstands things. She has dyslexia, ODD, adhd, and is mildly on the spectrum. Everytime someone teases her and she believes them (which leads her to think that she is “stupid”), it breaks my heart. She has many amazing qualities including dancing, drawing, and a strong fashion sense, but the haters only focus on her perceived flaws. I tell her all the time that you have to take the challenges with the blessings, and that she is who she is BECAUSE of her dyslexia, not in spite of it.

Another form of teasing is making fun of the way people talk. My oldest son has had to deal with that for years. He has a lateral lisp and it makes it difficult to pronounce certain sounds clearly. Other boys have been cruel to him over the years in various ways. They ask him to say certain words that they know he has trouble with just so they can laugh at his mispronounciations. Amazingly enough, he brushes it off and doesn’t become nearly as upset as I do over it. The sad part about this situation is that most of the teasing happens when he is at church! I often wonder if other people teach their children to respect people with differences or not. Because my kids would never in a million years make fun of someone for how they read, talk, look, move, etc… yet we run into this sort of thing way too often. I won’t even get into what he deals with regarding his tics and poor handwriting skills (which are tourettes related).

Then there is my middle son with moderate autism and severe adhd. He is ALWAYS blamed for things whether he does them or not. He is picked on because he is aggressive, has delayed echolalia (which means he repeats things from movies and conversations at inappropriate times), and is extremely wild most of the time. All he wants is to have a friend, and even some family members shun him because of his behaviors! It is so sad to see. We have had other kids over (friends of my girls) who complain about him or ask loudly if we can “lock him up” for a little while so they can have some peace. Excuse me?? This is MY house. This is HIS house!! And you have the nerve to ask me to lock him up for YOUR comfort? As you can imagine, kids like that aren’t invited back again.

Although all of those situations are difficult, perhaps the worst of all is when people make fun of my non verbal son. He doesn’t even have a voice to defend himself! It hasn’t been much of a problem until recently, and I am shocked and angered to know how heartless people can be. So to the kid at Disneyland who thought it was cool to mock my sons excited noises when he was in line for the roller coaster, I have this to say…YOU try being 12 years old and unable to speak to express your thoughts, feelings, and excitement. YOU stand in line knowing that everyone is staring at you because you can’t get your body to behave like you wish it would. YOU go to speech, OT, habilitation therapy AND school everyday for ten years and listen to everybody discuss you.in terms of how much progress you’ve made recently. YOU live in his body for one day and tell me how that works out for you. Do you still feel like mocking him now? And to the older teenaged girl at Costco who decided it was cool to do the same thing…YOU are a heartless witch who may be able to speak, but certainly don’t know the language of love and human decency. People like you remind me that not everyone in the world has a heart as caring and sweet as my nonverbal son. I would be ashamed to be your mother, and I hope what you did comes back to haunt you someday.

Does that sound too mean? Well its only a fraction if what I was thinking in my head. I am not the type to cuss at people or freak out in public. I am continually disappointed and hurt by people who behave this way, but I choose to fight evil with kindness. I choose to not let it ruin our day, and I remind myself that their opinions mean nothing. Now if someone could just explain all of that to my children. You know…the ones who are hurt even more deeply than I am over this kind of behavior seeing it is directed towards them?

Bullying must be stopped! Here’s what you can do to help…

1. Refuse to laugh at jokes made at the expense of special needs people. You know those old “retarded” jokes? NOT COOL.

2. Raise your children with knowledge about disabilities.  DO NOT turn a blind eye and ignore people with special needs. Instead, educate everyone you know.

3. If you are clueless, then make a point to find out about various disabilities and how they affect people so you won’t be.

4. Don’t assume its all bratty behavior if you see a child throwing a major tantrum. Mind your business or offer a smile just in case its not your average run of the mill meltdown. Perhaps autism, adhd, tourettes, or ODD is behind the fit.

5. Stand up for people with special needs if you ever see a bully in action. God gave YOU a voice…so use it!!

6. Consider volunteering at the special Olympics, babysit for a child with special needs, teach him to play a sport, or just be a friend. You may be the only one he’s got.

7. Don’t be afraid. Yes, I know my son sounds strange, moves in an odd manner, and stims like crazy. Its not contagious, so get over it!

8. Build people up instead of tearing them down. People (especially families) living with special needs need to hear how good they are doing! We hear plenty of negatives and unsolicited “advice” all of the time. We need to know that we are doing some things right once in awhile.

I hope this helps you to see how much bullying can hurt, and also gives you a few tips on how to change our culture of bullying. One small step at a time we will get there if more people are committed to making this world a friendlier and more accepting place.
I hope you will be inspired to take that step along with me….

If you come to see us, you will probably be greeted with a big smile and a friendly hello. But if you try to sit down, we might have to clear you a spot on the couch or else you’ll be stuck standing. Being a slob isn’t something I have aspired to…I guess it sort of came as a natural progression over the years.

Growing up, I was the kid with the messy desk and the disorganized bedroom. I had piles of books and half written poetry all over the house, and organization was never my forte. When I got married, I learned to keep things neater and enjoyed decorating our first small apartment. It was easy to keep clean for awhile, but soon the babies started coming, and with them came alot of “stuff”. We moved into a townhouse, and eventually bought our own home when I was pregnant with baby number four. I was always a mediocre housekeeper at best, preferring to spend time with the kids and cook elaborate meals over daily vacuuming and sanitizing. I kept things clean, but not always tidy. Its not that I like disorganization, but my brain just doesn’t work like that. I would forget to clean the bathroom until it looked dirty sometimes, and laundry has always been my nemesis.

Once the kids developed signs of autism, my life got even more complicated. I already had four children when the kids were first diagnosed, and life was crazy as a nuthouse back then! Therapies, special diets, and legal battles took over my life. The house was extremely hard to maintain because I literally had no time for anything. I had four kids under 6, and was unexpectedly pregnant with our fifth when autism times three rocked our world. Those days were hard, but I’m not complaining. More like EXPLAINING…because so many people still don’t understand why my house is perpetually messy.

We have always loved having a large family. The autism is not the end of the world for us, and we enjoy each of our children for WHO they are rather than focusing on their “disorders.” That being said, it can still be REALLY, REALLY hard! Anyway, with each new child, every year the clutter seems to multiply. We currently have nine children, and are living in a four bedroom house. That’s 11 people sharing four rooms…you do the math! If I get tempted to feel like the house isn’t big enough, I just remind myself that many less fortune families are bunking into far smaller quarters with just as many people. We are truly blessed indeed to have all that we have. But its messy. Super, super messy and almost impossible for me to keep organized. I hate stepping over stuff just as much as everyone else, but it just never ends! The kids all have assigned chores (the ones who are capable anyway), but it doesn’t seem to matter. It really is like shoveling snow in a storm…

As fast as we clean it up, it gets messed up again. Too many clothes, too many toys, too many books….you name it and we probably have too many! I know we need to pare down our “stuff”, but the question is, where do we even begin? When do we even begin? Life is busy 24 hours a day here, and there never seems to be enough time. We are more overwhelmed with clutter  than ever, and I realize that it reflects poorly on me most of all (being the mother of the house and all). It is hard not to feel like a failure when my main jobs include keeping the house neat…but my life is just a little more complicated than most. I am always open to new ideas and help, but not comments and criticism. And unfortunately that’s what I get most if the time. Everyone is quick to point out what I do wrong it seems. How messy my house is, how behaviorally challenged some of my kids are (hello autism), and even silly things like how late we eat dinner. It gets tiring to hear all of the time as you can imagine.

I’m sure other families dealing with autism have similar challenges with housekeeping. I know other large families who face these challenges too, but they are slightly different because most of them are not dealing with special needs. When you have both, things are just different entirely! Its not an excuse..its a fact. And if you still don’t understand,  I’ll be happy to trade lives with you for just one week so that you can. I do alot of things right, but I’ll be the first to admit that I do alot of things wrong too. Yes, I am a housework failure…but as long as my family is safe, healthy and HAPPY…I can live with the 27 pairs of shoes on the floor. In the end, I’m sure that’s not what they will remember the most. They will probably remember the crazy autism fits, weird behaviors, naked kids running around, and extreme chaos…but hopefully the love that they have known will cover all of the insanity, and leave them with some fond memories along the way.

Be well my friends! And feel free to come on over if you don’t mind the junk. (If you do mind it, then feel free to come clean the junk! Lol)

Summer Camp

Today we bid farewell to our oldest son as he left for a long weekend at Royal Rangers summer camp. I am excited for him, but I’d be lying if I said I wasn’t nervous about it. This is the first time that he has ever been away from home by himself, and it brings so many things worthy of reflection to my mind. The early struggles we faced…and the ongoing ones that we still deal with for starters. I’m not trying to be an overprotective mom, but I suppose it just comes naturally after 13 years of raising ASD kids. I am so use to thinking for them, shadowing them, helping them, and running interference for them with other people. Its not easy to let go of some of that, and it involves a big leap of faith on my part.

He is going 5 hours away to an Apache Indian reservation in the mountains of Arizona. I am praying that he has a fun trip and figures out how to fend for himself while he is there. Fortunately, he has known the leaders for about six years now. He started this group at the age of seven, and at the time we had to send his grandfather along to shadow him, providing  support and assistance in class. After years of being with the same boys, and even enduring some teasing from them, he seems to be holding his own and fitting in more now than ever. He has always had a remarkable ability to ignore the little twerps making their rude comments to him, and I admire him greatly for that. If it were me, I would have gone home crying and never returned after the first few incidents. But he brushes it off and ignores them so that he can participate and earn all of those badges anyway.

It took us days to pack for this trip. We packed all of his gluten free food in a cooler so he’d be prepared. He had fun picking out the hot dogs, udis buns, snacks and more at the store yesterday. I packed him a hearty lunch so that when they stopped at a junky fast food place he would be prepared with his own goodies. There was excitement in the air on his part, mixed with a tiny bit of nervousness I’m sure! I really hope that he has a fantastic time, as this will give him the confidence to attend other Ranger events since we are unable to go with him most of the time. The work here never ends! Usually Kevin goes along, but this time he has no extra vacation time to spare…

One unexpected thing happened yesterday as we were packing his gear. We were busy labeling his sleeping bag, air mattress, chair, and more while his brother looked on in envy. They are only 17 months apart, and so Nicky always wants to do what Elijah does. He is severely autistic, so in my heart I know he will never be able to attend an event like this on his own, and probably not with support either. Sadly, he just wouldn’t fit in or be able to participate with an organized group like the Rangers. He was watching with keen interest, and then he said “Nicky go camp” and it broke my heart into a million pieces. He is mostly nonverbal, and it takes alot to get him motivated enough to make a request like that. And what could I say? Well, I told him he is not old enough yet. But next year when he IS thirteen years old like his brother is now, I suppose that excuse won’t work any longer. Then what??

Navigating this path is never easy, and it brings new things with it each year. Heck, sometimes it brings new things with it each day! But here we are making it work somehow, just like thousands of other families out there who live with autism everyday. I am proud of my children and the progress they have made. It is a constant balancing act to figure out what they can handle vs. what they are not ready for yet. I hope I made the right decision in this case, but only time will tell. When he rolls back into town on Sunday afternoon, I’m sure he will be talking nonstop and giving me all of the details. I will wait in eager anticipation until then!

I’m at a baseball game right now. My oldest son is on the team, and he is one of two rookies playing for the Dodgers this year. To everyone else here in the stands its just baseball as usual…but to ME its magic! Why, you ask? Because he didn’t talk until he was around 3, he has struggled all of his life with poor motor skills, and he is diagnosed with autism/adhd/Ocd/tourettes. Trust me, I never thought I’d be sitting in these bleachers!

Now as I sit here on this hot and dry phoenix night, I wonder about my other sons who are back at home. They are autistic too, but much more severe. I wonder if my 7 year old will ever get to the point that his oldest brother is at. Although I don’t like to set imaginary limits on my children, at this point it seems unlikely. So while I am happy and thrilled for one child, I am stoic and sad for the others. Its an odd position to be in…

But tonight all that matters is the one I am here supporting. He deserves my excitement and attention to celebrate his accomplishments! And even though I am taking ten minutes to zone out and write this post (heck I know nothing about baseball anyway), I am truly happy to be here. I am happy because once upon a time we didn’t think he’d be capable of playing on a team…we weren’t sure if he’d ever live independently either. Yet he has come SO far that I can stop holding his hand so much, and watch him grow and mature into an amazing young man.

Not everyday is easy. We still struggle with tics, outbursts,  and obsessions. He can be extremely distractable, and his fine motor skills are far below where they should be. But tonight none of that matters….because tonight is pure magic and I for one still believe!

Self Taught Geniuses

My boys are smart…REALLY smart! In fact, sometimes I think they are little geniuses. Maybe its from unschooling/homeschooling for so many years, or maybe its just because they have autism and that alone makes them intellectually unique! Whatever the case, if I need to know something about geography, the environment, wildlife, or sports, I can ask my 13 year old son and almost always get an accurate answer. Pretty amazing for not having a “formal” public education. He knows all of these things because he chooses to fill his mind with interesting educational facts instead of nonsense. Since he was a mere child, he has been memorizing facts from the world record book as well as the world almanac. Oh how we use to get sick of being quizzed on monotonous facts repeatedly! However, his persistance has paid off as he has built a virtual database of important facts in his mind.

Now we get to see our 7 year old do the same thing as he immerses himself in old magic school bus videos and books, as well as educational Charlie Brown videos. Who knew that Snoopy covered some awesome historical events such as the building of the transcontinental railroad, or the birth of the constitution! But soon my Jacob will know all about that and more, thanks to his intense interest and keen mind. The way they remember these things never ceases to amaze me.

Even my “low functioning” son (did I mention I hate that description?) has a great memory for detail. He is a Super Mario savant…no kidding! He watches video game tutorials  on you tube, and then plays the game in exactly the same fashion with unbelievable accuracy. He is nonverbal, and couldn’t even HOLD a wii controller a few years ago when we first got the system. Through much trial and error, he soon became the expert player in our household. It is really quite fascinating to see him play. This is a boy I never thought would be capable of much, and yet he can duplicate what he sees with such precision. AND he has a remarkable memory too… For so many years he was locked in the isolating prison of his own mind, and to see this accomplishment is mind blowing. Yes, I know its just a video game, but to us it is amazing.

I think my boys are self taught geniuses. They have a thirst for learning, be it books or video games, and I am proud of them no matter what they choose to pursue. When they are driving me crazy telling me the latest facts they have learned, I too am learning! Not only learning new facts myself, but also learning to appreciate the amazing autistic minds that belong to my boys….Despite the inevitable difficulties that come with raising children with autism, I can honestly say that I am a mom who is truly blessed!!!

Road trip!

We are on our way to our first family vacation in seven years. It has taken nine months to save up for it, and over a week to pack for eleven people. The van is loaded, the kids are all packed in like sardines, and we are about an hour into this six hour trip. No major trauma so far…

Getting ready was hard! I had a big fibromyalgia flare up with all the activity this week, and Kevin had a rough week at work to boot. We averaged about three to four hours of sleep each night this week, and running on empty is really starting to wear us both down. We had alot to pack including extra meds and supplements, car activity bags for nine kids, Duffel bags full of clothes for each person, and food…it took alot of planning and we still ended up leaving our house a flipping disaster! I feel sorry for our housesitter this week. On the other hand, if I had a week alone in the house I could clean the heck out of it!! Its SO much easier to be productive without the kids around.

We redid the seating arrangement after careful thought, and everyone seems happy with their placement. We put the three whiners right behind mom and dad (ages 7, 4 & 2) so that we could be available quickly to help them. The baby is in the middle seat between our two older girls, and the very back seat has the two big boys and little Sarah (5). I have only had to listen to “100 bottles of pop on the wall” once so far, and even though it was driving me crazy, I knew the autism in them wouldn’t let them stop singing until they got to zero…

I am hoping there are no major meltdowns in the car, nor any barfing or potty accidents. Probably should’ve brought paper towels along! I may have forgoten paper towels, but I sure brought everything else including a little travel potty, lots of fun car activities, and plenty of advil :-/

I am very excited about taking the kids to the pacific ocean for the first time! For 4 of them it will be the first time they see ANY ocean! And Disneyland is a first for us all. I never even would have considered a trip like this if it weren’t for our daughter Leah. Her dance team has been invited to dance in the CA adventure park! Its a big honor, and we are so proud of her and her teammates. Despite her pdd-nos & dyslexia (plus a few other things), the girl can dance! I never get tired of seeing her perform either. She just comes alive on stage and melts my heart each and every time!

Top concerns are losing kids at Disneyland or at the beach, public meltdowns, and some fear of the unknown. I am hoping that the joy we experience will far outweigh any temporary stress that we may endure! 

Look for more trip posts soon!

Amazing Aspies

Even though my son Jacob has high functioning autism and not aspergers, I fondly refer to him as an “aspie” because he is so much like his daddy. At 7 years old, he is reading at a 5th grade level, and continues to amaze us with his vast array of interesting facts. In fact, he almost got straight A’s on his most recent report card. He missed by just one subject…a “B” in language arts probably because he hates writing. I often wonder…how can this brilliant little boy turn on us in the blink if an eye? How can he suddenly lash out in violence and anger when just the second before he seemed so philosophical?  It is hard to understand even for me sometimes, and I’m his mother! I am always in awe of my children. They amaze me in so many ways! Autism has its challenges for sure…but it has some great benefits too. Would my children be so creative if they were “normal”? Would they be so smart? Would they still look at the world through a unique perspective?  Maybe. But then again maybe not…in the meantime I’ll take things as they are and count my blessings that despite all of the craziness, my awesome Aspies are pretty amazing people!

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