More Cowbell

We’ve been very busy lately and it has been a few months since I updated everyone on what is going on with C.

Before I do, I want to share this… One of my very favorite Saturday Night Live skits that I recently rediscovered.(Here) Now that’s done, on with the updates.

We got the results back from the anorectal manometry procedure that I previously wrote about and it indicated that he does, in fact, have proper muscle function in his lower gut, but that they are not being used properly; this is likely related to his Executive Function delay. The results caused our GI doctor to recommend behavioral therapy with biofeedback which has had success in other patients but, as of right now, we are still waiting for a referral to someone that provides this service.

Hearing the word ‘behavioral’ connected to his gut issues is, yet again, hard to swallow since we’ve heard it so often over the years. However, if you look at it in the proper context, with the proper explanation (something we had not been previously given), it makes sense. It is not behavioral in the sense that he is defiant, it’s behavioral in the sense that he needs to learn how to use that part of his body properly, and behavioral in the sense that he needs to be more proactive in his health. He needs to take the vitamins and medicines we offer, eat the correct foods, go to therapy, practice what he learns, and spend time on the toilet. In theory, all these things will lead to his being able to get out of his pull-ups, wear normal underwear, and not worry about accidents.

The drawback to all of this is that I lack complete confidence in this assessment. One thing that stood out to me, during the procedure, is the final test that they performed. They are supposed to inflate the balloon until he feels it but, the doctor just zipped through the test and I don’t think C felt it at all. Which would be consistent with what he’s told us all along of not feeling the urge to go, and not feeling it when he does go.

Meanwhile, we have been seeing his psychiatrist and working with him to balance the medications used to treat C’s anxiety, depression, and ADHD. So far, we’ve found a good balance, although he still struggles with agoraphobia. Just getting him outside to play is a battle.

We have also been trying to figure out what might be causing an idiopathic low-grade fever. He has been fighting this fever for at least 6 months. He complains daily about being tired and, when he does feel good enough to do something active, it’s short lived because his legs ache or he quickly becomes tired. We have asked doctors and they all seem to agree that it not linked to the constipation. We’ve had blood tests drawn. Everything seems normal. Recently we were referred to a pediatric rheumatologist. Thankfully, she ruled out rheumatism as an issue for us to worry about.

One thing that the rheumatologist did say that we found useful and interesting was that he should be taking vitamin D daily. Where we live, there are a lot of overcast days, especially in the winter (the American Pacific Northwest and the UK have nearly identical climates). Most people in this region are vitamin D deficient. Without running a blood test, she felt confident that a daily vitamin D regimen could help his achy, tired body issues. She also felt that all his symptoms are linked together: his anxiety keeps him in a flight-or-fight state which causes constant stress. Constant stress and anxiety keep the body tense, which makes it hard to relax enough to potty. You can’t go potty, so you get stressed. It’s this cycle of stress feeding itself. Many times, a body reacts to stress with a fever. Of course, this led me to do a search for low-grade fever issues and came up with a term called Psychogenic Fever. One of the articles I found on the National Institutes of Health website described it this way:

Psychogenic fever is one of the most common psychosomatic diseases. Patients with psychogenic fever have acute or persistent body temperature above normal range in psychologically stressful situations.

Another interesting but technical medical article about Psychogenic Fever can be found here. Lastly, another article about schoolchildren developing fevers during testing times was also interesting and can be found here.

It all fits what we see in him, yet we can’t seem to find a resolution that works. We have tried bowel-specific physical therapy. We have tried medication, stool softeners, a high fiber diet, vitamins and so on. He still can’t grasp the process to defecate. Hubs and I will be meeting with a psychologist this week to see if she feels that she can help us work with his needs, and then C will meet with her a couple days later. Hopefully, she will have an idea of how to improve things for him. If she is unable to help, I have a strong feeling we will end up looking into a Cecostomy. It’s not ideal but, at this point, we are looking to provide him with any form of relief so that he has less stress and improved mental health.

Maybe once his gut is healed, he will have a fever of a different kind. A fever for more cowbell!Cowbell

The Fly

The other day we had a fly get into the house. For most, this would not be a big deal. Most people would just swat at it or ignore it until it leaves or dies on its own. No, we don’t like them in our house, but for three of us, they aren’t a big deal… until they are.

The Fly ScreamSo, we had a fly buzzing around. Now E, with his entomophobia, was not pleased with this situation. Although he has been working on this phobia with his therapist, using exposure therapy, he went straight into panic mode this time. He begged us to ‘get it,’ frantically pointing to where it was every 30 seconds. Dad grabbed the electric fly swatter that we bought, hoping it would give E a feeing of control and power over the flies. So, while Dad is trying to track this small thing, E is panic stricken and loud which then feeds into the dogs’ excitement and they start going crazy. Needless to say, the whole house was in uproar. Everything stopped until that fly was dead. E got banished to his bedroom to hide and calm down. Dad kills the fly, Ethan comes out of his room, things return to normal… until we had a second fly a few minutes later. Panic sets in again. Dogs go crazy, E and C are yelling, and there is no reasoning with anyone until the fly is gone. Eventually Dad was able to talk to E and explain that it is much harder to catch the fly when everyone is yelling and jumping around towards the fly to point it out. Each time that happened, the fly would move. It’s much more effective to sit still and track the fly with your eyes and tell Dad where it is so that he can slowly stalk it. We got the dogs outside, and E goes to his room again, only to come out later, explaining that he can’t stand not knowing what’s happening. Eventually, Dad traps the fly against a window with the curtain and has E smush it. It was a gross goopy mess on my curtains but a good experience for E in personally defeating something so scary to him.

To us, it was just a small fly. It would buzz around a bit and eventually, after a few days, die (if the dogs didn’t eat it first). To him though, this fly was a huge horrible monster bug that scared him because it was unpredictable.

The next visit to the therapist brought a new strategy. We were advised to purchase a small package of fake rubber flies. Allow E to use these flies to prank other members of the family. Then we in turn prank him and so on until he is more comfortable. We were also to just place random flies around the house – if he finds them, he gets a small reward. This may help with desensitization with incidental exposure to real flies.

So, we purchase the flies online. E is aware of this new plan and agrees with it. The day the flies arrive in the mail, Dad and I are too excited to remember that E was supposed to have control of them at first and we decide to have a bit of fun with him, subtly placing one on the table next to his water bottle. He doesn’t notice right away but, when he does, he jumps, yells, and gets angry at us. We talk it out, he feels better, and we surprise him with another fly at another time. Again, it doesn’t go great, but he seems less mad. It seems that we are on track with this new program. Later that evening, we remember that we were supposed to let E play with the flies first. Oops.

Eventually, this plan involves the use of real flies in a jar to be studied. When that becomes less scary, we’ll release it into a small room like the bathroom, and sit with him while he sits, aware that the fly is in the same room and, eventually, move that idea to the whole house. The idea is to desensitize him to the stress of surprise. Personally, I see this phase taking a long time. I’m not super excited about purposely setting flies loose in my house, but if it helps my son, I’m game.


What do you think of when you hear the word hostage? Maybe you picture someone being held at gunpoint in a bank robbery or home invasion. Maybe it’s something you heard about in the news. Maybe it’s just a vague concept to you. I used to think of it as a mix of all the above. defines hostage as “a person given or held as security for the fulfillment of certain conditions or terms, promises, etc., by another.”  Seems pretty straightforward. But, why am I even discussing hostages?

20170605_021014349_iOSToday is a bad day. A cold has been circulating through the house and today, for the first time in like three weeks, we all mostly felt good. Fevers are gone, congested drainage has slowed (although not totally gone, thanks to spring allergies). C is having a hard time entertaining himself as usual. He has already done the chores of his choosing (he’s not supposed to have a choice but, this is the only way to get him to do anything), and managed to eke out an hour of school on the computer. He wants ‘someone to do something with him’ and yet, he can’t commit to any option presented. He feels negatively about himself. He thinks no one wants to be with him. No one likes him. I do my best to boost his self-esteem, encourage him, and suggest activities that we could do. He, ever intent on defying any positivity, denies or even refuses to acknowledge the encouragement. He refuses to accept any suggestions. We go around and around and get nowhere. At this point, I’m wanting to agree with him that no one wants to be with him because I have nothing left to say. I am beyond frustrated. I just sit there and listen to him whine while drinking my coffee. From an outside perspective, I must look heartless. I’m not though – this conversation breaks my heart.

So, as I sit there, trying to find peace and calm, I decide that we’ve been in the house too long. The weather outside is beautiful and perfect for a walk. I change out of my house clothes, in an attempt to look presentable. E loves the idea, and runs off to get ready. The dogs are going nuts, they can sense that fun is about to happen.  But, C is not having it. He does not want to go.


He hides himself under a desk in the office, crying that he doesn’t want to go. When I try to talk to him he just moans at me. He hides his face. He pulls at his hair and cries. I try my best not to respond with the anger and frustration I feel. That makes the situation worse. I try to bribe him: we’ll just walk a short walk. He can ride his bike instead of walk. We’ll walk to the donut shop for a fresh donut. I just really want to get outside. He won’t respond. I mention that it’s something we are all doing together and we want to spend time with him. Nothing. Crickets. Well no, not really. He’s still crying, but he’s ignoring me.

So, I flop into a chair and dive into mindless iPad games for a few moments to readjust my attitude. I’m furious, but I can’t direct it at him. When he feels that he is being “yelled at” or disciplined in any way, it sends him into a spiral. In fact, often, just trying to talk to him makes matters worse so, I tend to wait him out.

beanAt this point, E steps in and tries to mediate the situation. Often, he is the only one that can get through to C in these moments. Conflict makes E uncomfortable, and he knows how anxiety makes him feel which he thinks helps him understand how to help C. Sometimes it drives me nuts that he parents his brother better than I can in those moments but, mostly, I’m very appreciative of his help. He just has this way about him that 4 out of 5 times will resolve the situation and smooth things over. He might negotiate a deal with us to make C happy, or he will do something to make him laugh. It really is amazing and I’m grateful.

About a week ago, I meet with a new psychologist that will be doing a formal mental health evaluation for Mr. C. For quite some time we have been struggling with his behavior, and are desperately trying to get to the bottom of his issues and needs. The issues may be “as simple as” anxiety (I use quotes here because I know that anxiety is not easy) but, it could also be a key piece that helps us understand his already complex puzzle. So far, he has been diagnosed as Gifted, 2E, ADHD, SPD, ODD as well as having GI issues. The frustrating thing is that what one doctor says is an issue, another disagrees with. It’s confusing and stressful. We see in C behaviors that we previously dealt with in E, yet the tools we successfully used with him don’t work for C. Our “Mr. C Toolbox” is empty. So, we keep digging.

But I digress. I meet with this new psychologist for a pre-evaluation meeting. This is standard procedure in these cases. The parent(s) meet with the doctor to talk candidly and frankly about the issues without the child overhearing and their feelings being hurt as the parent vents. As I sit there, explaining how things have gotten to a breaking point in our home, she asks me: “So, it’s basically like you are a hostage in your own home, wouldn’t you agree?”

1561Say what? I hadn’t thought of it like that. My mind was blown! I was racing through my historical knowledge of our situation and making comparisons.

“Yes! Yes, that’s exactly how it feels!”

Our conversation moved forward and we sat for 3 hours discussing everything. By far, this was the most thorough intake interview we’ve had yet.  I’m excited to see how this evaluation proceeds.532353

Since that word was mentioned, I can’t stop thinking about it. I’m a hostage in my own home, and it’s not fun. Granted, I’m not actually being held at the threat of violence but, some days, it feels like it.

Today, the chaos was calmed by E offering to play Minecraft with him and I did not get my walk. The dogs are pouting. The boys sit in the other room, calmly building houses and exploring together. Meanwhile, I sit here, held hostage by a child that has demand avoidance and cannot help himself, but makes life miserable for those around him. I’m looking for ways to break out of this situation and wondering when the next crisis will arise and what small insignificant thing will be the cause. Most of all though, I’m hoping to see a light at the end of the tunnel.


We Got This

It seems like lately our focus has been on Mr. C a lot and not so much on Mr. E. It’s funny because we had such a stretch of time where we were so focused on E and how to help him and now the tables have turned. We spend our time trying to figure out what tools we need to give to C to help him and figure out what we are dealing with.We_Got_This

Meanwhile, E has been growing and growing and growing. It’s like we looked at him and were like: “Parenting this lovely high functioning autistic boy is easier now. He is stable. We got this!”

Then introducing puberty. He’s our sweet and thoughtful kid on his good days. On his bad days, well…


So now we have a son that we walk on egg shells around. The slightest word or even noise can send him in a spiral. Stimming has increased. Anxiety increased and anger…the anger increased. It’s like every time we try to talk to him, regardless if we are trying to instruct him, guide him or simply ask what he wants to eat mild mannered Bruce Banner turns into the HULK and “target angry!”

All hopes of a calm day or peaceful encounter go down in smoke. What are we to do? Are we going to survive this?

An article in Psychology Today states:

“Most children with autism have a terrible time with change. They like things to stay the same, as they are used to the familiarity of routine. If there are no new things, they don’t have to anticipate for any ‘attacks’ to their senses; they can anticipate what is coming next…The point is, body changes are scary for those who do not like change, but by telling them and showing them the changes that will happen can make it much easier for them.”

Ok check, we’ve had “the talk”…well not that talk but the “You’re growing into a man” talk. Part of the issue that concerns us is that he will regress in his behaviors, and being our first time parenting a “mean green tween machine” how do we know what is normal adolescent behavior changes and what is connected to his autism?

Recently I read an article on discussing regression. You can read it here. It stated:

“Adolescence can be trying for children and their parents. A diagnosis on the autism spectrum compounds the journey and makes it more complex, to say the least. …on the issue of regression, there is reason for concern, but not panic…it is reasonable to conclude that a child with Asperger syndrome or High Functioning Autism can learn to cope with the trials and tribulations of puberty and adolescence. Your son will have many questions, it is important for you and his father to be tuned in to what he might be asking for.”

Ok phew, I don’t have to panic. We’ve discussed changes in a matter of fact way and he gets it. Mostly, we just have to try to help him learn to cope as he changes. We can do that.

What is interesting to me and so hard on all of us is the emotional rollercoaster he is on. He seems fine one moment and the next he is rolling on the floor yelling. He can’t put words to what he is feeling. As a person who sometimes finds too many words, it’s hard to comprehend. also had some good information. You can read it here. It says:

Aggression and Moods
Due to an increase in testosterone during puberty, it is possible that this time will show an increase in aggression. Also, mood swings and strong emotions can lead to aggression and in appropriate behaviors. It is important to focus on communicating feelings and finding appropriate outlets for increased feelings of aggression and strong emotions. For example, using a punching bag to work out excess aggressive energy or having a special spot to take a break when emotions are overwhelming can help a teen with autism have their emotional needs met without turning to maladaptive behavior.

Since teens with autism will not always be aware of social norms that go along with puberty, it might be necessary to pay attention to bodily changes for them in order to prevent them from standing out and being ostracized. Things like wearing a bra, putting on deodorant and shaving legs are often looked forward to by typical developing peers who are anxious to grow up. Yet, teens impacted by the combination of autism and puberty might not notice that these things need to be done and will require extra guidance.”

I really like the tip to find an alternative way to get those frustrations out. Now all I have to do is figure out what might help him. Always “figuring things out.” It is also important to help them to pay attention to the changes as the article brought out. One, that is a big deal in our home, is deodorant. We’ve had him using it for a while now, but he usually forgets to put it on. Boy i-find-your-lack-of-deoderant-disturbinglet me tell you, we all notice.

So, we gently remind him that he needs to put it on. However, with the additional attitude he has now, that usually brought on a problem.

I decided I’d try another method and looked at some ideas on Pinterest about wall charts. It took me about one whole afternoon, start to finish, some poster board, free clip art images and tape/glue. I did a small chart for his bedroom using the “First, Next Then” method and an AM and PM chart for the bathroom using the same method. Pictures help make the visual connection to the action, rather than just having a bunch of tasks in a list that don’t mean much. So far, this has been a good start to helping our E find a little bit of independence and dignity with his new changes, but it isn’t a fail-safe. After having the charts two weeks, he still at times forgets to check them and forgets deodorant.

Still, it has helped. Dad has also taken time to sit and talk so things don’t come as a surprise. All in all, I think we still got this.puffer26

A Day in the Life  

I am a planner, organizer and, truth be told, a worrier. I am rarely late but I stress out when I am. I try to remain calm and hide my inclinations, and I especially try to hide the worry from my own little worry wart, Mr. E.

I want to share a little story about a day I had recently. To really appreciate this story, you need to understand that our life often revolves around travel on a ferry. To travel, you must make a reservation and be in line a minimum of 30 minutes prior to departure or risk losing your coveted, reserved spot. So far, I have lived with the ferry system for at least 16 years. I know the drill.

I used to love the slow, calm ferry ride in beautiful surroundings. And then I had kids. Granted, they aren’t totally responsible. When something becomes familiar, you often forget to stop and smell the roses, forget to appreciate the beauty around you. Ferry rides are now filled with activities, tablets, walks around the boat; anything that keeps the kids from making a scene and disturbing our fellow passengers. Most parents go through this but, with special needs kids, all these steps are overwhelming and, often, we just sit in the car. An hour or more in a cramped space with a sensory-avoider and a sensory-seeker. Oh! what joy!

In our 16+ years of marriage, my husband and I have learned the art of blitz shopping: You are going to “the city,” you have this number of hours until your ferry home and a list of things to get done. Ready. Set. Run!

Then we had kids. And now everything takes four times longer. Your list gets chopped down to what can and can’t wait. Then, add in the special needs. Many stores we go to are too busy, bright, crowded, etc., and cause sensory overload. We’ll spend way more than we wanted, buying pointless things just to keep them happy, keep them going, keep the peace. Don’t even get me started on eating out. “Oh, you like Chinese, Mexican, Indian, etc., well, too bad. The kids will only eat…” It’s so hard to remember that they are not spoiled or misbehaving kids. Their brains are just wired differently. You cannot force food or any other issue on them. You can offer and try but, 9 times out of 10 you will be in the same restaurant that you’ve been to twenty times before.

Okay, so now let me set the scene:

It was a dark and stormy morning. The kind of morning where, when the alarm goes off you hit snooze as many times as possible. The kind of morning when you would gladly let your cozy, warm bed keep you prisoner. As I lay there, forcing myself to wake up, I hear the rain drumming on the window, the gusts of wind shaking the windows. On the floor beside me is my ever-faithful mutt snoring like a hog running a chainsaw. I snuggle deeper into the covers and feel the warm body of the puppy snuggled up, stealing half my pillow, and the not-so-soft breathing of my sleeping hubby.

Finally, I drag my lazy bum out of bed and grab a shower. Today was one of our travel days. We have a very good set of local doctors but, as you know, no one ever has all the support service that they need in one place. So, we have a special behavioral/meds doctor and a pediatric dentist that are wonderful but in another city. Normally, we leave in the morning and come home on a late afternoon or early evening ferry. Today though, we have the dentist, and tomorrow, we have the doctor. Our morning progresses smoothly and all is well. The kids are up and dressed and have even eaten breakfast. I feel like I’m on a roll. Time to go and suddenly, my blissful blanket of peace rips apart as the boys start fighting over something stupid like who got their shoes on first. (Sigh) a normal day ahead. The kids run to the car and “forget” that they were asked to help carry things out. So, I struggle to load the ice chests and overnight bags into the car while avoiding the late-night land mines that Jack left on the driveway instead of in the grass.

Now we’re on our way and I feel confident that I can do this alone. I do appointments alone all the time. We’ve even done overnights without Dad or another adult and have done fine. I’ve chosen limited shopping today to maximize our play time and hopefully make this fun trip instead of boring and stressful. We reach the ferry in time and wait to get on the boat. The rain won’t let up, although the wind seems to have died down. As the cars start moving in the first holding lanes, I start the car so that it can defog the windows enough for me to see where I’m going… or at least, that was the idea. The car battery is dead. I have had this happen already once before in the past six months. The last time, I had turned off the car but left the headlights on. I’m not sure what it was this time but, there’s no time to worry about it. Without a thought of the torrential rain, I jump out of the car and run (run!) to the toll booth where I know that they keep a jump kit. I take the kit and run back again, quietly cursing my very out-of-shape self.

The rain is pouring and I’m trying to find the hood latch with visions of somehow getting my hand stuck in the grill… (a childhood story for another time) while trying to wave the traffic around me since I am now holding up the line of cars. It takes a moment for them to see me waving them around – maybe the rain was obscuring me as I stood there waving with one hand and trying to pop the hood with the other, while wearing only a thin black sweater for warmth. (Before you ask Mom, yes, I had a coat and a hat but, in my haste, promptly forgot them.) Meanwhile, the boys are freaking out that we are going to miss our ferry and hollering at me, asking what I’m doing and all the imagined pandemonium the comes with active imaginations and anxiety. I get the car started with the help of my new favorite black box and we’re off – the last car to board the ferry. As I sit and filter the boys’ questions, I realize just how drenched I am. My hair, which had been freshly washed, dried and styled, now lay limp on my head, literally dripping water. Drops of water run down my face and neck. I feel as if I’d just stepped out of the shower and hadn’t toweled off yet. My sweater, scarf and jeans are soaked. Thank goodness, I have an hour ahead of me to air-dry before facing the public again.

Needless to say, it wasn’t a fantastic start to the day. The rest of our time basically followed suit, with many meltdowns and issues. Ah, just another day in my life.

Failure Is Always an Option

There is a group I follow on Facebook for parents of 2E kids. The other day, a post on that page struck a chord. This mom said:

“I feel like a jerk sometimes for “forgetting” that my child has a real and genuine disability. So often, I’m ready to rip out my hair and scream, “You are EIGHT years old and you have an IQ in the 99.998th percentile! You shouldn’t need me to brush your teeth and tie your shoes!”

I *know* she has a disability but so often, I just think of her age and her intelligence and find myself feeling angry that she still needs help with these things. I know it’s unfair and it’s something I’m always working on as a parent, but it’s hard sometimes.”
Twice Exceptional Children (2E) on Facebook

I know exactly what she means. I feel this way quite often, raising feelings of guilt too. Our Mr. E is now almost 10, Mr. C is almost 7. They are always asking for me to do this and do that for them. “Seriously, you can’t figure out how to put bread in the toaster?” “Can’t get up and get yourself water?” “Can’t figure out how to turn on the shower?” “Ahhhgggg! I have things to do, figure it out!”

However, on the flip side, I do way too much for them. We were at the boys’ therapy session last week and I took a few minutes to connect and discuss a game-plan with the therapist. After talking with her for just a few moments, I had an A-HA! Moment: my boys can’t do things because I do everything for them! My life is made ten times harder because of my own issues with needing it to just get done now, not in a few moments.  Or, like the old adage says, “if you want it done right, do it yourself.” I think that I have allowed their limitations in some areas affect all areas in their life.

For example, I’m pretty sure that they both could operate the toaster but, they are afraid of getting burned though, so they don’t use it. Instead, they expect me to drop what I’m doing and make them toast. The A-HA! moment came from me explaining to the therapist that I still cut up their waffles in bite-sized pieces for both of them. What? My kids are afraid of getting cut, so they are nervous of knives. This leads to them taking ridiculous amounts of time to eat unprepared food and lots of mess while they struggle to figure it out. I have no patience for that. I hate seeing them struggle with it. “Ugh! just give it to me and I’ll do it!” So I just do it. I haven’t given them a chance to try. Oh, the guilt!

Yes, these boys have special needs that must be considered but, I have allowed them way too much freedom to exploit their parents’ kindness and love. Time to put the foot down. “You’re thirsty? You have the ability to get a cup and fill it. If you spill, oh well. Now you know how to pour.” “You want toast” Then put the bread in the toaster and turn it on. I’m happy to help you pull it out when it’s done, but you figure out how to put the butter on.”

How many of their issues are my fault? I still, occasionally, feel responsible for their issues anyway. I work constantly on not connecting the autism or sensory processing to something that I did or didn’t do while pregnant. It’s so easy to take that blame. It is not my fault. It just happened. But now? Now, I think I legitimately caused some delays because I’m a hoverer, I’m a doer and yes, I’m a mom who loves “helping” with projects… probably too much. I’m a helicopter parent.

The full weight of this came crashing down on me this week. I spoke with the hubs about the therapy visit and my epiphany, and explained how we need to let go of some of this work. Help the boys learn for themselves. He’s on board. So, now, we instruct them to do what they need to do or help them work it out, but they do it.

Meanwhile, we’ve had a full moon and some heavy winds at our house which always cause the fuzzies. Their brains are less clear. They feel unwell, scattered. They are loud and bouncing off the walls until asked to do something. Then they need time to rest. This is normal crazy-time in our house as the weather changes to unpredictable fall weather. This is the worst time of year for us. Along with the unpredictable weather, we get unpredictable children. Children who are already struggling to fit back into a school schedule. Struggling to attend classes or therapies at the school despite being home-schooled most of the time. Children who spend days in their PJs, refusing to leave the house. This is the normal fall crazies.

Now, this week, we are adding a little more tough love: making them do more for themselves. We are already seeing the results in anger flare-ups and meltdowns. The boys fight more and whine more. Sleep is more difficult. They appear lazy but, really, are overwhelmed with the change. It makes for days like today, when I ask myself if it’s too early for happy hour! I’m stressed and struggling to teach them; to keep their attention and keep the peace while trying to run the rest of the house. This was never the plan. My brain is resisting – I’m cranky too. To E, I find myself saying, “You’re almost 10! This should be so easy for you!” I find myself forgetting that he has so many issues to deal with…

Now C starts into one of his epic meltdowns; most likely over something that seems like nothing to me. The other day, it was because he kept messing up the alphabet letter he was writing. It wasn’t perfect, so the pencil was thrown down and the arms folded, holding his head while he sobbed – actual tears this time. “Wait, what? Why are you crying over that? That’s so ridiculous! Just take a breath and try again. That’s why we use a pencil: so we can erase. What is the matter with you?” Oh! That’s right, the meltdown is the end of his struggle to contain big emotions and feelings. He cannot control this. He can’t explain why he’s upset but, there is no doubt that he’s done for the day.

These are the moments when I blame myself. I feel like a failure. Now I’ve lost my cool. I’m not patient anymore. These kids, that are the loves of my life are driving me crazy. There are times that I can’t stand to be in the same room as them.

So, while I am not to blame for their disabilities, I am to blame for much of their lack of basic life skills and knowledge. I’ve made our lives harder by trying to make them easier. It sounds strange to say that but, it’s true.

It is time for me to let them go a bit more. To stop treating them like small children and help them realize that they can do more. Maybe, just maybe, by doing this, while, for now, things may seem more difficult, more of a mess and take longer, maybe life will get easier.

It’s like my son’s fortune cookie last night said: “You will never succeed without learning from failure.”


In the past week, we have been away from home at least half the time; doctors that are too far to travel to in a day and so on. One thing of major import in my world, is that our little C is finally going to get some assessments and we are going to finally know what we’re facing. We had our first visit with his new doc. On the first visit, he meets with just the parents to find out what we hope to accomplish and so on with his help. I know we don’t need labels on our kids. I know we won’t treat him differently, except everything will be different. When he’s running down the sidewalk cartwheeling his arms and legs out to the side as he goes, we’re not going to be as frustrated with him if we know that he’s not being crazy, he’s self-soothing. I mean, in some ways, we already treat his oddities this way. We’ve learned from working with his brother that these are the ways that he fills his sensory needs, but it is still really hard to act like everything is fine when he’s running away from you, bumping into other people or sitting upside down in his chair at the restaurant. He’s a wonderful, loving child who seems very ill-behaved at times but really isn’t. We are tough on him. We make him earn his privileges and so on. However, for those not in the know, he often comes off as a wild child.

Today, while trying to eke out a little bit of school work from him, he sat on the table, with an elastic tie around his head and used the tip of the tie to point to the answers as I scribed them out for him. He kept saying that his brain wasn’t working; he couldn’t think but, as soon as I took over the writing, we got a few pages done, as long as I allowed the odd tie situation.

So, something that made me happy: we finally got into this new doctor. Even though it was just one session, I already feel completely validated in some of the hard choices that we’ve had to make about C over the past year. Things like pulling him out of school because it was just too much for his sensory processing. Things like choosing to sit in the cafeteria at a spiritual assembly we attended, rather than the auditorium because the boys could not handle sitting in a room with almost 1000 people, and sitting at a table was easier for them to keep busy than sitting in a row of chairs all day. Fewer eyes on them if they have to move and so on.

Many do not get it, however, and we get the looks. You know, the look. It’s the look that is on the faces of so many strangers who have no clue what you’re dealing with. People, who look at us parents and think that we need to reign in our kids or make them sit more still. “Why does you kid have giant headphones on? Shouldn’t he be paying attention to the program?” You see the questions on their face. They can’t help it and they just don’t get it.

I recently came across this post by Louise Williams: No One Likes a JudgeyFace. She perfectly expresses a parent’s feeling when they get the JudgeyFace. As a parent that sees the face often, I think this is a brilliant article.

“…whilst at the pool when James wasn’t even being that crazy I saw it. The expression people pull when they are making instant judgements about James and I.


Yep. The face that people display when they are appalled by what they see. They were appalled by my amazing son. How dare they?…”

“…They are judging us. They are judging him, for being a bit unusual and me for not doing something about it…”

It’s a known quantity for parents of quirky kids. No matter what you’re facing with your kid, there are people out there that will judge you or your child for not meeting their/society’s standards of “normal”. We just have to find a way to move past it; let it roll off our backs like water on the proverbial duck. (Does water roll off a duck’s back? I don’t know but, it seems like it should so, I’m going with it.)

That is a challenge though. We are fighters for our kids. We want them to have the same opportunity to have a happy, carefree childhood that other kids have. They are most likely oblivious to the looks but, we parents are not. We see it. We feel the judgement and we break a little inside for the lack of understanding, for the lack of normalcy that we don’t have. We could just as easily have a NT child (NeuroTypical = average) and the get the JudgeyFace anyway, and maybe we’d even deserve it. Or would we? As I sit here with my quirky kids, I realize that no one deserves it. No one really, truly knows what another parent is going through if they aren’t living in that family. Sometimes, even our spouses/partners don’t fully get it, because they may be working outside of the home every day. They see a few hours in the mornings and evenings and then on the weekends, but not the daily struggle of the stay-at-home parent. I know my guy tries so hard but, in some ways, he won’t ever be able to get it because he’s not here during the day. Besides, even when he does see it, he doesn’t get it from my perspective because we are totally opposite personalities.

In the post I mentioned earlier, Louise refers to a video called Too Much Information. I love this video! It’s a very short film done by The National Autistic Society that puts the viewers in the shoes of a boy with autism. It breaks my heart and yet I want to keep watching it. I want to be reminded what sensory overload can feel like because it can help to give me the patience that I need to help my boys work through their overloads.

We should be less quick to judge; be more sensitive to the variety of situations that could cause whatever issues brings on that face. Please watch the video and maybe you will feel less like making a JudgeyFace the next time the opportunity arises.


April is Autism Awareness Month. In fact, World Autism Awareness Day was April 2, 2016. All over the Internet, on Facebook, Pinterest and other social media sites, we are bombarded with images promoting awareness. We’re told to “Light it up Blue” for Autism. There are lots images popping up in support of autism, expressing feelings of being proud of our children and appreciating what makes them special. These are all great things but, honestly, it feels forced or fake. I mean, I love my autistic son just as much as I love my other child (who has, as yet, unidentified special needs). I agree that each child with autism is different and most don’t “look” autistic. I agree that they do things that make me proud, but there are those days…

One saying is that Autism is more than a diagnosis. Quite true. However, for so many families (like ours) it was a lifesaving diagnosis. The diagnosis shed light on all the quirky things that were going on that we didn’t understand. It opened doors that were formerly closed without a diagnosis; things like occupational therapy, assistance from the schools and many more.

One particular type of image that really gets to me are ones like this:


To start with I do not like this photo. 80% of autism diagnoses are in male children. Diagnosis cannot be done before age 5 due to brain development, although I do believe there are indications from the beginning, thus “early intervention” techniques. I do agree that we are now on an unplanned journey and I do love my quirky kiddos, but let’s be honest here. There are days I don’t like them. In fact, there are days I really wish there were exits off this road we are on. A way to take a different journey; maybe the one I dreamt of or planned. To just walk away and not look back. Oh, how there are those days! In this photo and many out there advocating the love of our kiddos, this falls short. The child is neither male or old enough to have the official diagnosis.

One blog I recently discovered is called Autism in Our House. On April 1 she posted on her Facebook page the following:

Two years ago, I started a group of posts called…drum roll please…Autism In Our House for Autism Awareness Month.

Autism in our house is having to have the seams in your socks lined up just so but the ability not to notice wearing shorts the wrong way all day. Autism in our house is wicked sensitive. The kind where worry over someone can make him sick. He loves all living things…non living too…

Autism in our house is a week long struggle over finding the right mediation that insurance will cover. Autism in our house has co-morbid conditions ADHD and anxiety.

Autism in our house is almost always an explanation but never an excuse. Autism in our house is neither feared nor hated; it is self-advocacy, education and acceptance. It is growth through challenge.

#‎AutismInOurHouse may not look like autism in your house, and that’s okay. There’s room here for all of us.

I love the way she phrases things. I totally relate. I could basically cut and paste so many of her household issues. So many of us deal with the same struggles with our own kids, and yet we tend to feel alone. We all have various situations and I feel like the awareness campaign, while a great thing, doesn’t cover all sides of the issue. The campaign is about being proud, self-advocating, pushing for education and acceptance. What it doesn’t cover is the stress and emotional roller-coaster that each day presents, not only for the brilliant kids involved, but for the parents and families who support them. This is a hard journey to follow. It’s stress, tears (for both parents and kids), anger (again, both sides) and, sometimes, laughter.

So, the following is Autism in Our House:

  • Meltdowns over what seems like nothing
  • Emotional roller-coasters over seemingly nothing
  • It’s allowing them to wear whatever shoes they want, even if it’s summer and they chose snow boots because they feel good.
  • It’s cutting tags off shirts because they feel like thorns and Band-Aids just don’t fix that. (credit Fowl Language Comics ©Brian Gordon)tag
  • It’s taking the time to make sure the socks are on right and don’t have holes, aren’t “itchy” and come up the leg to just the right spot.
  • Constantly worrying over everything. Are we doing enough? Are we doing the right things? Should we or shouldn’t we medicate? and so on.
  • Arguing that, just because you mentally understand grown-up material, doesn’t mean that you are emotionally ready to deal with it. This includes books, movies and video games.
  • Arguing that, just because you fit the rated age, some shows aren’t good for you and over stimulate you, even cartoons.
  • Homeschooling and the daily battle to stay focused and do the work.
  • It’s allowing sweat pants to be worn in public because they are the only pants that can be worn, even though you swore you’d never let your kids do that.
  • It’s always being on edge when you are out of the house, not knowing if the next meltdown/fight is just around the corner.
  • It’s planning to walk out the door a half hour before you really need to, so that you can actually leave on time.
  • It’s spending way too much money every time you go to the store because you give in and buy what they ask for just to keep the peace.
  • It’s carrying a purse as big as a diaper bag to make sure that you have snacks, activities and a change of clothes for a short outing because you just never know.
  • It’s negotiating every meal just so they eat something.
  • It’s fixing multiple meals because what you fixed wasn’t what they wanted or because they changed their mind.
  • It’s not going outside because of bugs.
  • It’s co-sleeping, even when you swore that would never happen or they are just too big now.
  • It’s never having quiet time again.babysitter meme
  • It’s never having “dates” again with your significant other.
  • It’s walking the fine line of fairness to each quirky kid, while balancing age-appropriateness.
  • It’s realizing no matter how hard you try, something will seem unfair and there will be issues.
  • It’s playing judge and jury over every little thing.
  • It’s obsessions with Legos, Star Wars, superheroes, Dr. Who, Minecraft, rocks and gems. (Although, to be fair, that’s just good parenting.)
  • It’s an eclectic musical playlist
  • It’s never watching a TV show or movie in the allotted time, or watching the same show/scene over and over until you’re breathing
  • It’s leaving a destination early, even when you are enjoying yourself, because they can’t handle the people, the light, the noise or whatever.
  • It’s scanning Pinterest/Facebook and other places online for tips and tricks for ways to soothe or deal with one issue, only to find that it doesn’t work for your situation.
  • It’s spending hours and hours reading, researching and seeing doctors and therapists to learn how to best help your family.
  • It’s never feeling like our house is adequate enough to accommodate all the items that codoesn't lookme with helping your kids deal with their sensory needs.
  • It’s having people give you advice on how to discipline your children, or even judge your parenting skills because they don’t understand.
  • It’s having people be shocked because your child seemed “normal” to them.
  • It’s being constantly disappointed in the people that you naturally would have expected more help from.
  • It’s having charts and schedules on your walls instead of art, and constantly changing them because they don’t work and you want to try a different one.
  • It’s having every surface of your house covered in unfinished projects.
  • It’s depression and anxiety and self-doubt, both by you and them.self doubt
  • It’s toe-walking and attachment issues.
  • It’s multiple diagnoses (ASD, ADHD, ODD, SPD, etc.) waring against each other.
  • It’s finding surprising overwhelmedmoments of humor and joy and love.
  • It’s pretending to be fine, even if you feel broken inside.
  • It’s this and so much more!

It’s an “adventure with quirky kids.”
This is my Autism Awareness.

Eye of the Tiger

Last month there was a day called: International Women’s Day. Unsure of what that even means? Don’t worry. I put trusty ol’ Wikipedia to the test (’s_Day). Here’s what it has to say:

International Women’s Day (IWD), originally called International Working Women’s Day, is celebrated on March 8 every year. In different regions the focus of the celebrations ranges from general celebration of respect, appreciation, and love towards women for their economic, political, and social achievements. Started as a Socialist political event, the holiday blended the culture of many countries, primarily in Europe, especially those in the Soviet Bloc. In some regions, the day lost its political flavor, and became simply an occasion for people to express their love for women in a way somewhat similar to a mixture of Mother’s Day and Valentine’s Day. In other regions, however, the political and human rights theme designated by the United Nations runs strong, and political and social awareness of the struggles of women worldwide are brought out and examined in a hopeful manner. Some people celebrate the day by wearing purple ribbons.

Huh. Okay. Now we know. I only bring it up because my internet music station of the day had suggested playlists featuring Women Artists of various genres. Tired of the repetitive sounds of the video games in the background, I scrolled through all the genres and made my own list that put me in my happy place. Man, there are some great works of art out there! Once I put my music on, cue the kids to start whining for “their” music list. In my mind, my inner child is screaming: “NO! Mine! Mine!” (add foot stomping). I actually say that, since they are playing in the other room, I get to pick the music at this time. There is no diplomacy.

I’m a musically-motivated person. It sounds funny but, it’s true. If I need to get stuff done, I do it better and quicker with music playing in the background that I can sing and dance to. It’s amazing how fast time goes when I’m “plugged in.”

Music helped me get through my day and get things done. It broke down the wall that was keeping my thoughts jumbled and helped me with some creative crafty projects today. Lately, I’ve been knocked down repeatedly but, each time I get back up and fight a little harder. It’s like that Sara Evans song, A Little Bit Stronger. Each day I get a little stronger. I just keep going, one step at a time.

Another song of inspiration for today is one of my kids’ favorites: Katy Perry’s Roar :

“Get ready ’cause I’ve had enough. I see it all, I see it now.
I got the eye of the tiger, a fighter, Dancing through the fire
‘Cause I am the champion, and you’re gonna hear me roar”

It’s like Apollo Creed said in Rocky III:

“If you stand toe-to-toe with this bum, he’ll kill you. It doesn’t take a man to stand there and get your head beat off! He’s just a man, Rock. So, be MORE man than him! Go get him; Eye of the Tiger!”

I’m going toe to toe with life. If I let it, it will knock me down. I have had enough. Enough sick, enough fatigue. I’m fighting back. Starting now! Eye of the Tiger!

“Hello. It’s Me”

By now most of us are very familiar with Adele’s huge hit “Hello.” While this song is supposedly about healing old wounds from a bad breakup, I think it’s a fitting song for me, talking to my younger self. If you are not familiar with her song you can listen and watch it on YouTube here. Fair warning, you will get it stuck in your head for a long time. Personally, I love this song, I love her voice, I often blast it at top volume pretending that I can sing just as well.

Just some of her lyrics include:

“They say that time’s supposed to heal ya
But I ain’t done much healing”

“There’s such a difference between us
And a million miles”

“Hello from the other side (other side)
I must’ve called a thousand times (thousand times)
To tell you I’m sorry
For everything that I’ve done
But when I call you never
Seem to be home”

I had planned to write about the trials we go through raising our quirky kids, but an unexpected part of that is the effect on me, the primary caregiver. I know that most people change, often dramatically, once they have children. That’s not news. What surprises me though, and what might be news to some, is how much you change when you have a quirky kid or, in our instance, two.

When we were first married, I was the outgoing, active, young thing that loved adventure and having fun. I hated spending nights in. I preferred going out and “doing” something. My dear husband? The total opposite. He preferred quiet evenings in; fewer people, fewer busy things. We balanced each other out well. Things started to change when we had kids (as it does). We were normal, new parents. We loved our little one but, we were tired (make that exhausted), and over our heads with the “new.” We would jump at a chance to get a break.

Had we been looking, we may have noticed the early signs and symptoms that eventually lead us down the path to E’s ASD diagnosis but, the truth is, we didn’t. With no experience, we figured that we were just parents of a picky, non-sleeper. As he grew, he was just a very bright child. Then we had another kid and he was dramatically different from the first. But we were still tired. We changed again to adapt.

Now E is 8, and C is 6 and I have to take a step back and look at who I have become. I am a mother, wife, and so much more, but one title I didn’t expect to have was caregiver. Once you become the parent of a quirky kid, I, personally, feel like you can call yourself a caregiver. They take so very much extra from you.

In those rare, brief moments of calm and peace, I look at myself and think, “Who are you?” The creative, artistic me is buried deep down inside. I never have time to create like I used to, or the patience to try creating what with the activity and noise that follows my children. I’m tired, worn out, often depressed, and could easily become a hermit just for the peace and quiet that comes with it. A dramatic change from the younger me.

Now I’m in my mid-30s, the primary caregiver to our kids, and a lot is sitting on my shoulders to take care of. I have become the glue that holds our family together. I keep track of the multitude of appointments, likes, dislikes, and skills we are learning in order to cope and help our children. My days are full of stress, and it’s taking its toll.

I am not who I once was but, what’s even worse, is remembering that I used to say that I felt good, most of the time. Now, I rarely put myself at the top of the list. This I am learning, is a major no-no. What happens when I get really sick? Things don’t get done. Things get forgotten. Things fall apart. Don’t get me wrong: the hubs is amazing. He does his best and steps up to the plate, but it’s not the same. He knows what I deal with, what I do, but he doesn’t “know.” He is the breadwinner and I am the homemaker/caregiver. It is two very different jobs and, while he can fill in, to me, he doesn’t have the qualifications to keep the job long-term without extensive training. Maybe it sounds mean, but I am the one that has found the doctors, researched the issues, implemented the tactics, and then told him. I could never even fill in for him at his job. At least he can do that for me. He is a hero to me. Picks up the slack when I just can’t do it anymore. He encourages me. He supports me even when I’m not at my best.

Lately, I have not been at my best. I have had years of struggle with health issues of the womanly variety. Usually not something I like to talk about, but it is now very important to me. “After all, if you haven’t go your health, you haven’t got anything!”

The final straw was in this past year, having a never ending “cycle.” Most women have a phase of “PMS” and then the bleeding. Mine cycle never stopped. If I wasn’t bleeding, I was in a never ending loop of PMS symptoms. Think Bruce Banner and the Hulk. “I’m always angry.”

I have had trouble with weight, acne, lots of hair growth (where it shouldn’t be). Think Austin Powers. “She is rather man-ish.”

No, in all seriousness it’s been bad. I sometimes didn’t even recognize or like myself. Finally, I took matters into my own hands and went to the doctor. I mean how can I raise my children to be polite and respectful and find joy in life when I’m always angry and irrational? I was referred to a doctor. He was old school and horrible to me. Told me I was just being emotional and needed birth control. After making me wait over an hour past my appointment time, he gave me maybe 10 minutes and didn’t listen to anything I had to say, any of my concerns. I admit, I was emotional but, there was no excuse for his attitude towards me. I left feeling even worse emotionally and very, very discouraged.

I requested another referral and, what a difference! This doctor listened and seems to care. He ordered blood work and even an ultrasound to make sure he treated me the correct way. Blood work was easily done. The ultrasound, a fun side story.

The word ultrasound, always brings forth images of babies and happy, happy, joy, joy. This was not that. This was a “Do I know you?!” kind of appointment!

I didn’t get the technicians number, but I did take myself out to eat after and made a great date for myself!

All this comes down to the fact that I have been diagnosed with Polycystic Ovary Syndrome (aka PCOS) It’s not an end of the world kind of thing, but it explains so much of what I’ve been dealing with. It’s fascinating to me that I probably have had it for all of my adult life and, several of my family member may also have this, all undiagnosed. It requires a lifestyle change to the point that I need to become more active and eat better. All very difficult with the kind of family we have. But, if I can lose even 5% of my current weight, I can improve my symptoms. I also have to take medication but, all doable things! Once again I can feel like me. Rejoice!

A month into treatment, I’m still Bruce Banner, but less often. I’m still man-ish but working on it. The past few days have been a roller-coaster of emotions and feelings. My dear, sweet hubby reminded me that it’s my hormones flushing out. Fat stores hormones. As I lose fat, the hormones get flushed out and cause the hulk-like behavior. Thank goodness I have a patient and forgiving husband to stand by me.

Now, I can look forward to saying, “hello,” to my former self, and remember some of the things that I enjoyed, and add them back to the me that I am now. I’m not all that sorry for the changes I’ve gone through. I am a more rounded and balanced person but, I will welcome back some of the personality that got suppressed. I think it will help keep me sane on insane days, and remind me to take good care of myself as I am needed to care for others.

Hello. It’s Me.

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