Vindication

“You don’t have a right to the cards you believe you should have been dealt. You have an obligation to play the hell out of the ones you’re holding.”  – Cheryl Strayed

When your child is dealing with issues or has first been diagnosed with a condition, whether it’s a learning difference or a major illness, there is always a moment of grief. Grief that life is unfair, that this wasn’t how things were supposed to go, this wasn’t planned, you don’t deserve this hand of cards.

I’ve been through this type of grief twice now. It takes time to process how things are different now and figure out what comes next but, at some point, you have to decide to put your grownup pants on, and then take action, to play the hand you’re dealt.

Recently, I reached out to the autism center that we’d worked with before to perform another assessment of C. It had been over a year since they informed us that C had “red flags” but, he did not meet the qualifications for an autism diagnosis, mostly because he is so social. When we left that visit, the doctor handed me a list of other evaluations that she strongly recommended that we look into to facilitate additional help and services.

Over the past year, I’ve looked to the public school and our local therapist and, eventually, E’s psychologist, for help. Nothing was forthcoming, and I was tired of waiting. So, I called the autism center and I asked for help and referrals. I wasn’t sure that they could help since it had been at least a year since we were last in but, they put the referrals through that same day. That. Same. Day! I am still in awe at how helpful the nurse I spoke to was. (If by some chance you read this, Jan, thank you so much!) I was given several options of additional offices, not connected to the children’s hospital, to call, as well as direct referrals to the hospital.

The next step was figuring out the best doctors to start with, considering the distance to drive and our insurance coverage. Amazingly enough, two of the alternative locations were preferred providers on our insurance! I was in shock but, rushed to call. The good vibes kept flowing and each call resulted in an appointment that was not long off! Hurrah! I was going to keep fighting for my little man and figure this out! I was so happy and excited.

Finally, the time comes, and we make the two-plus hour trek to the various doctor appointments. The first doctor was a pediatrician who was going to evaluate C for ADHD. Even though we arrived nearly an hour early, we decided to sit in the lobby rather than in the car. I was shocked when we were taken to see the doctor early, nearly right away. She was so nice and observed C while chatting with me. Then, sends us off with the “Vanderbilt” forms. These are the standard starting place for an ADHD evaluation. The parents and the child’s teacher each fill out the form and then it is scored and reviewed by the doctor. Since C is homeschooled through a public school program he actually has an official teacher to do the form, however, she couldn’t really fill it out because her personal time with him is limited. Dad and I each filled one out. Then, being me, I look up the scoring sheet online and “score” our forms. Dad and I each filled almost identical forms, and yet, the way I read the score sheet, seemed to indicate that C did not actually qualify for the ADHD diagnosis but, we are not doctors.

Our next appointment was actually two in one. We found a therapy center that focuses on pediatric occupational, physical and other therapies. C was evaluated for occupational therapy (OT) and physical therapy (PT). In both cases, there was no question that he needed help. They even caught a potential issue with his vision and sent us to a developmental vision clinic for evaluation.

While we were there, E gets all pouty and grumpy. He thinks everything looks fun and wishes he could go there. Currently, he is only getting OT from the public school. As much progress as the school has helped him make, they tend to focus on the things that help him get through school rather than long term, overall growth. I see the value of E having additional help and arrange for a referral from our local general doctor. He was more than happy to help, but warned me it may take time due to the high number of referrals his office is already working on for other patients. But, again, I’m blown away by the help I received. The next day the paperwork was done and E had an appointment for evaluations for the next time we go to sessions for C. Everything seemed to be falling into place.

The next week I (again) make the three-day trip for therapy. (I say three days because, with the travel time we face and the hour-long ferry ride we have to make work, we have to go the night before, then have a day of therapy and then stay one more night before returning home.) So, C starts out with his very first session of PT and OT followed by a speech pathology evaluation. Meanwhile, E starts his evaluations for PT and OT. Again, it is obvious that E really could use this extra help. I’m in love with this place! Everyone is so friendly and accommodating. Due to our distance, they are working with that in mind and schedule us for every other week rather than every week, and also worked as an entire office team to work out a way for all our appointments to be on one day in order to limit our travels.

After all this is settled, we go to the vision clinic and get C evaluated. He is diagnosed with Binocular Convergence Insufficiency. Basically, when he focuses on a point in the near distance, both eyes start to focus on the point as they should, but then one eye drifts off to look behind it. He has said that his super power is to see through things. I assumed it was pretend, because people don’t see through things, however, it really seems that way to him because, with each eye looking at different points, the primary object seems to disappear. He has no clue that this this is a problem. We had no clue because he has excellent vision but, this is a developmental issue that would not have been caught by a regular eye exam. It also does much to explain his issues with focus on school work and, possibly, explain many of the reasons we think he has ADHD. With the combination of eye and brain fatigue from this issue, in conjunction with his sensory issues, it makes perfect sense that he would act out, melt down and have trouble sitting still. Again, this therapy needs weekly appointments but, due to our distance, the vision clinic will work with us every other week. Thankfully, this issue can be resolved in less than 6 months if we can get C to do the homework every day. The hard part is that it’s one more thing he has to deal with and needs help with. It guarantees our staying away from home longer. It’s also very expensive out of pocket, with limited insurance help.

All these travels and therapies are a huge deal for our boys because they both hate being away from home. It’s so difficult to weigh the situation to make the right choices. Do we push the kids out of their comfort zone more, travel more, deal with more meltdowns and “sensory hangovers” yet, get the services they obviously need or, do we make things easier on everyone and try to just continue working with the school system? At this point, we’ve decided to give the therapy a try. I say “we” because the hubs and I make these decisions together but, it’s on me to execute them. He is the breadwinner and has to go to work each day. He won’t be making these trips. He stays at home to care for the animals and home, and work to pay for these services that the kids need. I appreciate him so much, I value his contribution to our family and how I can actually be an at-home-mom for our children. However, the impact of this new routine affects me more than him. I pack and unpack, parent the children solo more now and, have to spend time away from my own comfort zone. Somehow, I need to keep it together. He still gets up and goes to work. His routine doesn’t change much. The main difference for him is that his evenings are quiet and he gets more time alone. So, we have been trying to figure out ways to make the travel and changes easier on our family, and we take things a day at a time. We also wait; wait for evaluations and diagnosis.

After a couple of weeks, I got a phone call from C’s new pediatrician regarding the results of our Vanderbilt forms. First of all, I was so surprised that the doctor, herself, personally called to talk and, second, she did it to avoid us having to come in again for something so minor. She told me that the scoring on the forms indicated a combined Hyperactive and Inattentive form of ADHD as well as ODD. We talked for a while and I filled her in on the results of the other evaluations. Something she said really struck me as fascinating: Often times, when kids deal with these kinds of issues, it’s hard to determine which is the chicken and which is the egg. Basically, it’s really hard to know if one thing is causing the other or, if they are separate issues. Regardless, we were right in our concern for him and, the next time we go in, we will focus on a treatment plan. I’m ecstatic. I mean, I am not happy that my kid has ADHD, but I’m happy that my instincts were right and I’m not just crazy! I knew he had untreated issues.

My first thought after hanging up the phone was vindication. I’m vindicated as a mother with an intuition that my son needed extra help. We are finally on the right path! Our new doctors and their services are our future.

The doctor is… Out!

This entry was written last month. Because of the strong emotions attached to it, it’s been hard to edit. My apologies.

Mr. C has been dealing with so many issues that I don’t know where to begin listing them. We have suspected for quite some time that he is dealing with attention deficit issues of some sort. I lean towards ADHD but I’m perfectly willing to accept an alternative diagnosis. All I know is that this kid needs help!

I’ve done my research and have read that the chances of having a second child with ASD (especially if it’s a boy) range anywhere from 5-15% greater if you already have a child on the spectrum. I’ve researched the symptoms of various challenges and everything I’ve read points to this kid having ADHD, Sensory Processing issues and probably more. When E started seeing a therapist, C and I would hang out in the waiting room. Occasionally, the therapist would spend a few minutes interacting with C. After just a few visits of seeing him for mere minutes, she identified him as 2E child.

Twice Exceptional  is defined thus:

“The term twice exceptional, often abbreviated as 2e, has only recently entered educators’ lexicon and refers to intellectually gifted children who have some form of disability.[1] These children are considered exceptional both because of their intellectual gifts and because of their special needs.

A 2e child usually refers to a child who, alongside being considered intellectually above average, is formally diagnosed with one or more disabilities.[2] The disabilities are varied: dyslexia, visual or auditory processing disorder, obsessive-compulsive disorder, sensory processing disorder, autism, Asperger syndrome, Tourette Syndrome, or any other disability interfering with the student’s ability to learn effectively in a traditional environment.[2] The child might have a diagnosis of attention deficit hyperactivity disorder, or diagnoses of anxiety or depression.[3]

For years, I have been watching C for signs of “issues,” always knowing that he was smart but probably delayed in some way. E is a 2E kid who deals with ASD, ODD, ADHD, SPD and anxiety/depression. C has been evaluated for autism twice and, while he does have a few red flags, it’s not enough to diagnose him as autistic.

Last year, after the doctors who were evaluating C for autism decided that he did not meet the criteria, we were given alternatives for evaluation. But, the referrals never came though and we were on our own to get them. We took C to E’s special doctor. We had been working with a doctor for some time to manage E’s meds and ASD. This doctor has been amazing for him. Anyone who asked me about who we saw would be sung his praises. I mean seriously, this guy has made that much of a difference for us. So much so, that we often joke that E is now our “easy” child.

He did so much good for E, he’s bound to help us with C, right?

In the spring, we had C evaluated by this doctor, and he didn’t feel that C had ADHD or any real issues other than behavioral. He mentioned the possibility of ODD but felt that it may be learned behavior from E. He recommended family group therapy as well as individual therapy for C each week. We were that told he couldn’t help us until the defiance issues were dealt with. So, we followed his suggestion. We arranged family and individual therapies. We made major adjustments at home in an attempt to modify the undesirable characteristics. Things improved overall in our home life but, he was still having issues. Often, he couldn’t make decisions, wouldn’t answer questions because he couldn’t get the words out, and so on. So, more individual therapy, and more frustrating days fighting with him about everything.

C seems to never engage in a project. He is constantly bored. His therapist described it as a pervasive dissatisfaction and negativity with life. It’s almost as if he is unable to engage in something long enough to decide if he enjoys it. Even everyday decisions like picking which shirt to wear or what food to eat becomes astoundingly difficult.

We tried charts with limited choices, bought specific clothing… basically we did everything that was suggested. Then in October, we got to the point of desperation. He was miserable and we were too. The house seemed to be in constant turmoil. No one was happy. I took a stand and said enough was enough. It was time for a change. So, I took C to our local family doctor and asked for a trial of ADHD medication. I provided proof of why we thought it was necessary and he readily agreed with us and provided a prescription.

Within 24 hours, we saw improvement. C was now willing to try again if he messed up on something, rather than cry and run off.  He would persevere at getting his thoughts out. He could sit and do school for almost two additional hours if asked. It seemed clear that we had our answer – C did, in fact, have ADHD. As we worked with the medication, we realized that C was having the same issues E had with these same meds. It’s metabolized rapidly and the patient needs to take increasing amounts to keep a stable effect. The problem is, as we played with his dose, he began to lose his appetite (which is a known side-effect). This kid just about lives to eat. He loves to snack all day long. He is always hungry (although honestly, he could be using food as a sensory input), so this change was a big red flag and we slowly backed him back down on his dose until we found a suitable one.

He has been medicated for about a month now and, although the medication helps, it isn’t quite right. Likely, a different medication would be better. Maybe, now that he can focus a little bit, we are seeing underlying issues that he is also dealing with. We don’t know the answers.

With the determination of a mother on a mission, I typed up our notes. Notes of symptoms we see, changes from the meds and even notes from the therapist. All things that support our need for help. Then I make an appointment with the doctor that E goes to on the same day that E had a follow-up. I knew that the doctor had already told us that C didn’t have ADHD but, things had changed. He was not defiant anymore. We had followed his suggestions and still needed help.

I don’t really know even what to say here except, I was wrong. The doctor invites me in and we started out with E because he, theoretically, needed less time. Then after quite a while, we move on to C. I explain what we are dealing with. I hand him a copy of the notes that I had typed for this appointment. He thanked me but did not even look at them. He then told me that he would not be able to help. He did not believe that C had ADHD. He might have ODD but not ADHD. I questioned the fact that the medication helped and was informed that the particular medication we were using could help anyone, regardless if they had issues. What? I asked about the inability to communicate and focus. I was told that C needed more behavior therapy rather than medication. Something like ABA Therapy would be just right. But, when I questioned how to get that therapy when it’s only available to patients diagnosed with autism, I was told that <shrug> it seemed like I was “stuck.” Then he told me that I, personally, needed to create a more regimented day for C with a strict schedule and to be more firm with the rules. Never mind the fact that we’ve done this to no effect. When we tell  C “No,” he can’t cope with his out-of-control emotions so he throws a tantrum that turns into a 20 to 60 minute meltdown, crying, pouting, moaning and throwing things, regardless of there being an audience or not. Sometime, he cries so hard and for so long that he vomits. In telling me about needing to better train C to behave, the doctor tells me to think about all the amazing things you can train chickens to do, and they practically have no brains. WHAT!? Are you comparing my child to a chicken or saying that that he has no brain? What the hell?

Inside, I’m mentally shutting down. I’m fighting the urge to cry at the unfairness of life. Fighting to regain balance so that I can defend my opinions. But, before I can get a grip on them, he brings both boys into the office. He directs E to step on the scale, takes his blood pressure and so on. He talks to E about how things have been going, and then he shows us the door. Wait. Didn’t I have an hour booked for C? Shouldn’t you at least take a moment to talk to him too? I know for a fact that most of our time was spent talking about E. I know, because I can read a clock, that he just used our appointment to catch up on his late schedule. As I stand to put my coat on, practically numb with disbelief, C pipes up: “Hey what about me?” The doc replies: “Well I saw you,” gesturing to C sitting on the sofa, and then holds the door open for us.

I’m an emotional person by nature and, let me tell you, I bounced from shock to anger lightning fast.  I was fuming. I whipped out my phone and called the hubs to rant about what just happened, all the while trying to moderate myself and hint at how I really felt because there were children present. The rest of my day was spent mentally raging, planning on what I would write in my scathing letter to that office. Oh! He was so fired!  Let’s not forget that, meanwhile, I’m trying to drag my kids through Costco, their most hated store. They, of course, are feeding off my bad mood and are reacting to it and the overstimulation of the store. Now we are all upset. Is it happy hour yet?

After nearly a week, I am still shocked at how I was brushed off by that doctor. I’ve calmed down and will not respond in kind, and I will not write my scathing letter of disapproval. I will however, be the advocate my child’s needs. I will start over from the beginning. I will hunt down the referrals I need to see the specialists and get the evaluations I need. I don’t know what we find, but I am confident that we will find some form of help for our little C.

That doctor is out, but another will soon be in.

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.”

Summer

Summer is usually a happy time. Most kids love not having to go to school and being able to just play all day long. Parents often dread it because they have to keep the kids busy. In this house, it’s no different.

I was actually looking forward to summer this year. Both my boys are now home-schooled and I had many grand ideas: we’d keep our schedule with at least an hour for school work first and then go play for the rest of the day; we’d spend days at the lake, the beach, go hiking, go places like the zoo and aquarium, maybe even camp. Yay for summer. “This will be fun,” I said. I was so wrong.

My smarty-pants kids decided that summer meant no school and they refuse to do any. They are afraid of bugs so it’s a constant fight to get them outside. If they do go out, I have to go with them because, heaven forbid there is a fly near them or something. So the days are warm, and we’re mostly inside. All they want to do is play video games.

We’ve tried Geocaching  which gets them outside, but we’ve already done the easy ones in our area and the boys don’t want to keep going to the same ones over and over. The “harder” ones would be a challenge even for me so, I’ve determined that’s all there is.

What else do we do with these kids? We’ve made “calm down” jars, dug dinosaur toys out of ice, baked treats, made popsicles, even had water fights that were loads of fun (until they weren’t).

A couple of weeks ago, we did a short road trip to my parents’ home. They had recently moved and we wanted to visit and see their new place. We had a fair amount of dread, wondering how the boys were going to do on a six-hour drive but, the boys were amazing. We went the whole drive with no movies and they rarely time spent on their tablets. We did “old-fashioned” road trip games like finding license plates, try to identify the crops growing in the fields and so on. We stopped at road-side stands for fresh fruit and veggies and tried to teach a little along the way. So far, a highlight of our summer.

The problem is, now that we are home, the weather is warming up, the kids won’t go outside and they won’t stop arguing with each other! I don’t know if it’s that they are bored with the no-routine life or what. Seriously though, everything is an issue with them. Things that should be a nice side-by-side or cooperative activity are now competitions to see who can do it first, better, or with a higher score. I’m not joking: they recently discovered a cross-stitching game on their tablets (yes, cross-stitching). You sit and virtually stitch patterns, earning “coins” or “points” to use to unlock new patterns. It’s a solo game that should be calm and relaxing. How can that be a competition?  Well, with comments like: “What color are you working on?” “What pattern are you doing?” “Oh, well I already did that one…” What is their deal?

I grew up as the youngest of four siblings. Two are older and were mostly away from home by the time I was playing and creating memories. My next older sister and I, just 5 years apart, fought often. However, girls fight differently. But, I don’t remember this constant bickering and competition. Maybe we did and I don’t remember it but, I don’t think so. She never liked me following her around and “bothering” her but, I adored her and did it anyway. So, yes, we fought, but we were also friends. We played together at times and I have good memories of those times.

What makes my boys different? I’m leaning towards their special needs. I know that kids fight. I know that siblings fight. That doesn’t bother me. My boys are often closer than any brothers I’ve ever met but, I think they fight harder too.

Both of them deal with thought and behavior rigidity and poor communication skills. E has been diagnosed with ODD , and we suspect C suffers from it as well. We (parents and doctors) struggle with diagnoses on C’s issues because some of what we face may be learned behavior. He may have symptoms of ODD, or may not because he may have learned the behavior from his older brother. We have finally gotten a doctor to agree that there is something going on with C but, it’s being masked by these defiant, possibly learned, behaviors. We have to work on fixing those before we can proceed with helping him with the actual issue(s) and that equals a very complicated mess.

Anyway, these boys argue hard and often. My day often starts out with breaking up a fight before my morning coffee, then things calm down through mid-afternoon with only mild disagreements. Come evening though, the big fights are back. Especially right before bed. Oh, they are so done and over-stimulated by the end of the day that anything sets them off and nothing is forgiven! We often hear one say to the other that they want to stay away from them for the rest of__ (day or life are both often used!) Dad has a pretty good routine down to get them in bed and get their stories read, but it’s still hard on him.

What got me thinking this morning was C’s third or fourth meltdown of the day. Granted, he is fighting some illness right now. He has a low-grade fever and feels achy all over, but still wants to play. Not much slows him down. So, he manages to get E to agree to play with him, rather than play on his tablet. He has this idea of a “game” to play and is struggling to explain to E how it goes. He tries three or four times and E just can’t understand. He can’t make sense of it any more than I could. I was in the other room, and I heard the explanation. So, E’s getting frustrated because C just keeps repeating his explanation which makes no sense and E just can’t get it. He is trying hard to express that he doesn’t understand in a calm, friendly way but, pretty soon, he gets frustrated and he gets verbally aggressive. He’s not using mean words, but the tone has changed. Right away, C storms off crying into another room and slams the door. E is apologizing all over the place because he just couldn’t get it. C is crying because he can’t express it properly and Mom is stuck in the middle, not knowing which kid to soothe first. Not a major issue in the grand scheme of things, but an average snapshot of our day. We have multiple breakdowns in communication in this house daily. Often, it’s the result of the boys’ rigid thinking and lack of communication skills. Maybe that’s why I feel like there is constant fighting in the house.

So, we have these two sweet boys that are so thoughtful and loving but, are so often angry, upset and crying. It’s only the middle of summer and I’m over it. I’m longing for school to start again. Once school starts, our therapies come back into play and a fairly routine schedule; that always makes a difference. It will be interesting to see how having both boys home-schooled from the beginning of the year is different from last year when it was both for just two months. Only time will tell, but for now we have another month of summer to get through.

Empty

My son is empty. At least, that’s the word that could be used to describe him. He doesn’t seem to have the ability to make choices of his own; to like things of his own; to do something on his own. He is empty. He lacks the sense of self that allows people to be individuals, to have their own opinions, likes and dislikes. He is always looking for input on choices. It’s subtle; a slight glance at his older brother or a whine of, “I don’t know, I can’t think,” until the choice is made for him.

I’m trying to understand what it’s like. There are times when I’m “snacky” but I don’t know if I want sweet or salty. Sometimes I choose and it’s the wrong choice. I went sweet, but it turns out that I really wanted salt. Other times, I simply walk away, because I just can’t decide. Is that what he deals with every day, all day? Every day there are hundreds of little choices to make: what clothes to wear, food to eat, do I have to go to the bathroom at this moment or not, activities; and yet each choice becomes this impossible thing for him so he whines and laments his inability. Then Mom and Dad get frustrated and the whines turn into overload-meltdowns because he just can’t do it! How do we deal with this? How do we help him?

I’ve been dealing with my own emptiness too: the empty feeling of burnout. I have grand ideas but, as I sit down to attempt them, I feel nothing. I’m usually a doer, a crafter, a just-get-it-done kind of person. Lately, however, I just can’t. I haven’t been able to write or do any artsy/crafty/me-time type activities in over a month. For example, the other day I sat down to color in an awesome grownup coloring book that my sister gave me. I got out my personal art supplies and picked a page that seemed somewhat easy. And then I stared at the page for like five full minutes before I got interrupted by something and then it was so easy to let those other things get in the way. Finally, I put my art stuff away and I realized that I felt relief. I was overwhelmed by the idea of committing a color to the page. “What if it didn’t look the way I wanted it to,” “what if… what if…” There were too many choices to make. Too many chances that I could get stuck with something that I didn’t like. I locked up. My art brain checked out.

Then I found that I’ve been feeling that way in other situations. I am happy when plans fall through because I just can’t deal with socializing. I just want to be left alone. Day in and day out I’m pulled in different directions by two kiddos with different (and often opposing) special needs, and it’s exhausting! I am empty. I have no more to give when the day is done. I push through the day, anxious for bedtime so that I can curl up in my wonderful bed and relax with a book, a TV show or video games – something in my own world, with no commitments.

I rarely have time for myself to recharge. It seems that everyone stresses the need to take care of yourself, but when is there time? How do I achieve this when I’m the sole at-home caretaker (with health issues of my own) and the hubs is the sole breadwinner? We have friends, but not the kind that have time themselves to jump in and help – they have kids of their own and, to be honest, we are the only special-needs family in our immediate circle.

Even the most supportive of friends don’t always “get it.” They don’t see the meltdowns that come from overstimulation. “Every kid has tantrums/meltdowns/defiance.” Not unkindly meant but, meaning that we are no different than they are. But we are. When my kid is crying because he doesn’t want the dinner we put in front of him and he doesn’t know how to express himself because he can’t get the words from his brain to his mouth, it’s more than a simple tantrum over the food. We need a different approach. We have to try to coax the information that he doesn’t know that he has out of him. We have to help him understand what his choices are and make a few suggestions because he can’t decide.

I think of it like a cookie jar. I started my journey of motherhood with a huge jar, full of cookies. Every day, every trial, every obstacle we’ve faced, has taken a cookie from the jar. I have no time to bake more, no one else is baking any to fill it up, which means that the jar is now empty.

I give freely of my time, i.e., cookies. (Bad mom moment: giggling about innuendos.) I love being a mom (most of the time), and I love my family, special needs and all. I’m just empty inside. I have no way of refilling myself to keep going but, I push on. Cookies get broken in half to spread them further, then I give out crumbs. When you have no one to turn to that you trust will just get it, will jump in and help, will try take care of things the way you would (especially when there are people that you should be able to rely on but don’t make themselves available), what do you do? How do you recharge? Where do you find that “me” time that you need in order to take care of yourself?

Exercise is really helpful; it puts me in the right frame of mind for the day but, when can I do it? Do I sacrifice the limited sleep I already get to get up and do it first thing? That’s probably a good idea but, guess what? The kids follow me to the garage and watch and/or talk to me while I’m trying to tune out on the treadmill. Want to take a walk outside? They and the dog have to come along too. Do I wait and do it in the evening when Dad is around to help with the kids? Also a good idea but, I’ll just have a harder time sleeping from the energy boost. I don’t like exercise, but I do it for myself. I just don’t find it giving me that recharge that I’m looking for.

Regular checkups at the doctor? Yes, that’s a good way to take care of yourself. Those are very important. I’ll go in, dragging my two little monsters behind me because, where else would they be? But they’ll just roam around the doc’s office, playing with anything they can get their hands on.

Recently, I went in to have a large skin tag removed from the back of my knee. I got the lidocaine shot and the doc steps out for a moment while it takes effect, and the kids are all over the place, opening cabinets and touching everything in sight. Thank goodness we have an awesome doc who just rolls with it. I know that we’re not the easiest of patients. So, there I stand, pants rolled up above the knee with my back to the doc and the ever-inquisitive Mr. C is asking a million questions about what the doc is doing. The sounds of excitement when he learned that the doc would be using a knife rather than freezing… I was almost scared! I swear, he would have eagerly grabbed a scalpel and cut the tag off himself! This little one has a dark side I think. HA! Needless to say, doctor visits with the kids are never easy, often embarrassing, and sometime traumatizing, and I hate going. So I often put it off.

What else can I do to recharge? Read? Only if I want to read a sentence or two in a few hours. Try to bake? Cook something new or be crafty in some way? Only if I’m okay with the children butting in, touching things, getting in the way, or taking over. How about going into my bedroom sanctuary and relaxing? Trying to sleep in on a given day? No to both. The children will find ways of taking that too. They love to snuggle and that means lying next to and on top of me while talking non-stop.

One place that is always part of a joke is the bathroom. Maybe I could take just a few extra minutes? That’s not really easy in our current living situation where we have one bathroom for four people. Plus, thanks to Mr. C’s resistance to sitting on the toilet for any length of time, our therapist now wants us to announce that we are going in, and to wait a full 10 minutes so that he sees and knows that everyone else does it. He learns by observation, rather than by instruction. So now, they know where I am at all times! AHHH! It’s bad enough that we all have to share one bathroom, and that the dog follows me in most of the time because he’s going to panic if he can’t see me. Now, I have to announce it and sit and wait. Oh, if we had the room, I’d put in a comfy chair and stash snacks and books or magazines… maybe I could turn my 10 minutes into 30 and find that peace. Right now though, it’s a no-go.

I could go on, but this is getting depressing. I don’t mean to be negative but, I have to state the facts as I see them: I am empty, without much hope of a refill, and I have a child who is also empty. I have to push and struggle to find new crumbs in the bottom of my cookie jar to share and help my baby learn to make choices and learn to voice what’s in his head. Maybe one of these days, we will both come out the other side and no longer be empty.

#JudgeyFace

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.

JudgeyFace.

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.