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.

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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.”

#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.

Awareness

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:

journey

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.tv
  • 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.

SPD and Me

IMG_1376

SPD (Sensory Processing Disorder) (https://en.wikipedia.org/wiki/Sensory_processing_disorder) is something we are learning about every day in our house. E has it to some extent since it goes hand-in-hand with autism. He is sensitive to the texture of certain clothing, foods, smells and so on, however, it really is one of his lesser issues. C, on the other hand— he’s a whole other ball of wax! This kid has major sensory processing issues, in my opinion. However, it seems almost impossible to find help in dealing with it.

We always knew that, once C started school, it would make or break him, so to speak, in terms of knowing for sure which behaviors of his were learned from hanging around his older brother, and which issues were actually real. It’s a really difficult situation for us to determine because all we know is what E did at that age, and he was dealing with undiagnosed conditions.

C does attend public school which, where we live, is one classroom with about 30 kids, from 8:30 to 3:00. Yes, we are in a small community but, that seems like a lot of kids in a kindergarten classroom! During the first semester, I counted almost a month of missed days: some actual sick days, and many “sick” days. Those were days when he just couldn’t pull himself together and go. Days when I couldn’t get him out the door. He didn’t “feel good” or he was “too tired.” He frequently tells us that he “hates how long school takes.” He comes home exhausted and cranky every day.

But, once home, he is like a compressed spring that is suddenly let go, and he starts bouncing off the walls. His volume is at the upper levels, which causes E’s volume and stress to go up. It creates such a din in our tiny house, I almost have to yell myself to get their attention.

C loves to run, jump and hop so much that I’m surprised that he doesn’t vibrate with the energy. I can’t imagine this kid sitting for long periods of the day focused on learning. At home, he can’t even sit in front of a favorite show without moving. He’s pacing, jumping or, in some way, moving while watching.

He is always hungry (as boys can be) but he seems to use it as something to do when he can’t think of another way to amuse himself. He is constantly demanding to “DO” something with someone. He is unable to amuse himself most of the time. Then there is the talking; He never. Stops. Talking. Inches from your face, in your ear, or at top volume; he’s constantly talking.

Then there are the clothing issues, the food issues, and the list goes on. I’ve done my reading. I’ve used the checklists. He has SPD. Possibly more. As I’ve previously mentioned, we have been told twice now that he does not have autism. They think he is too social for that. He does have markers, but not enough or not the right ones. Okay. Great. Now what? Is it ADHD? Get the forms from the doc and fill out the parent form. Yup sure enough: ADHD with a side of ODD. However, to get an actual diagnosis, the teacher has to see issues. Now, I know most people love the kindergarten teacher. He is a great teacher and, I mean no harm but, it has been months since I handed him that form and I still have not gotten a response. “C is doing great,” is the most I get. “Fantastic! but um, can you still fill out the form, please?” Maybe he is “doing fine at school,” but he’s totally not “fine” at home.

I’ve decided that the referral process is taking too long. We need help now. So I start looking online. One of my favorite places online is Pinterest. I have fallen down the Pinterest rabbit hole so many times that I’m surprised I ever look up from my computer. I love it there. So many great ideas and fun things. My limited “me” time turns into untraceable minutes as I go from one great idea to another, and on and on it goes. Sometimes, I find just what I need. Other times, not so much.

One thing that I can find loads of information on is identifying SPD. What I cannot find is how to deal with it. Everything points to getting an occupational therapist that can diagnose SPD and work with them. Great, but what about those of us who cannot easily locate a therapist that does that? In fact, the only one in our entire county that I know of works at the school. She may not even be able to officially diagnose him either.

I love the comedian Brian Regan. This is exactly how it feels.

So I speak to this occupational therapist at the school since she is currently working with E for his needs. She tells me she will speak to C’s teacher and see what he thinks. Problem again is, if he’s not having any issues in class, then there is nothing she can do.

For a time we had an indoor trampoline in the middle of our living room so that C could bounce and jump all the time. It was really great, except that everyone was always tripping over it because we don’t really have space for it. We moved it to the play area in the garage for a time but, recently, just brought it back up.

I sound like I’m talking about a dog but, we try to run him (C, not the dog), play with him, try get his energy out somehow, but it’s not enough. We simply don’t have enough energy ourselves to keep up with him. It’s like he uses all his will power to keep it together in school and just cannot control himself any longer once he’s home. Even on the weekend: his self-control has been all used up for the week.

There are days I think about and plan to homeschool him too. I’d prefer to keep him in public school. I think it is really important that my boys have things that are just theirs. School is one of those things. C has a chance to find out who his is, apart from his brother, make different friends and have different experiences. But I wonder, is it worth it?

So, here we sit with a child that is almost beyond control on some days and we are is a loop of “I agree with you, I’d love to help, but I can’t.” What now?

It’s Not Autism.

To a parent of a “Quirky Kid,” those words can be a huge relief, knowing that something has been taken out of the equation. A weight has lifted off your shoulders because you know that it’s not this one thing. By contrast, it can bring another type of stress and emotion to the table. It’s great that it’s not this but, it’s something else. Now you have a bunch of referrals to other specialists so that you can narrow down just what you are dealing with. By this point you are emotional. You want to cry because you are happy that it’s not autism or, maybe, you want to cry because, wouldn’t it be easier if it was? At least you’d know the enemy that you’re facing. “Better the enemy you know, than the one you don’t.”

As mentioned before, we have two beautiful, brilliant children. Our oldest son deals with High Functioning Autism (ASD), which unfortunately took until he was six or seven years of age to diagnose. Now at almost nine years-old, we are managing things better than ever before, despite the “downs” that always come with the “ups,” and continue on our educational journey with him.

Our youngest son has been high-maintenance for a while, but not out of the scope of “normal.” We did our research, knew that there was a chance he could be facing similar issues as his brother, and so we wait and watch. We (myself more than the hubby) watch like hawks for signs, symptoms, indications that might mean something. Does he have autism? Should we worry? What struggles is he going to face?

I know every parent spends more than a little time worrying about their children’s health. Maybe it’s before they are born, worrying that they develop properly. Maybe they’ve gotten sick for the first time with something really bad. You worry; it’s in the job description. I tend to be “blessed” with an overabundance of worry. I am a worry-wart. I know better but, there it is. My mother-in-law, many years ago, gave her husband a little cross-stitched plaque that says, “Worry is like a fast getaway on a wooden horse.” I love that. It’s brilliant and simple. Worry gets you nowhere while using up your energy. Still, I tend to worry more than I should. That being said, I think that when a parent’s child has an issue of any sort (ours having ASD for example), that makes you prone to worry about the other children you have.

In our life, E was diagnosed later than most. We have dealt with guilt over not seeing the signs sooner, not getting help sooner, feeling that we did something to cause it… and the list goes on. Now we are facing issues with child #2 and every little detail about their achievements, or lack thereof, is scrutinized. Oh, he knows his alphabet before all the other kids in his preschool class. Should I worry? Look! he’s writing his name but doesn’t want us to know. He hides his intelligence. Is this an indication of a problem? He’s doing advanced math in his head, just like his brother. Should I worry? He’s doing this or that, should I worry? It’s really unfair to both the child and the parents. We are at a disadvantage. We have no knowledge of what having an average child is like so, we have no way to determine if C has issues or not. Everything is filtered through the lens of our experience the needs of our first “quirky” child. However, there are times when the scrutiny pays off. You may catch wind of an issue before it gets out of control.

About a year ago, we decided to see if we should do the ASD assessments to see if C was also affected. At the time, the professionals didn’t feel like he qualified to be assessed but wanted to do a follow-up in a year. Recently, we went in for this follow-up. He, again, didn’t qualify for the autism assessments. However, the doctor did agree that we could use some help in figuring out his “quirks.” She had a “no duh” type comment with considering sensory processing issues and recommended an Occupational Therapy Evaluation. Due to the fact that he almost never answers direct questions, a Speech Therapy Evaluation was recommended. Now we move on to his toe-walking. He has been wearing (or at least he is supposed to be wearing) foot braces at night when he sleeps and a different pair for the daytime. These are supposed to prevent his foot from going up on his toes, and train him to walk flat-footed. He doesn’t wear them often, the nighttime ones make him too hot and the daytime ones prevent him from running, skipping and jumping, which he lives for. He still walks and stands mostly on his toes, so we are referred to a Physical Therapist who will better evaluate if the braces are enough or if we need to try serial castings, or even surgery to help him walk flat and avoid any growth development issues as he gets older. It was also recommended that we see a psychologist to get an official ADHD diagnosis and to learn about the best way to help him cope with that, as well as getting an extensive IQ test done that might help to pull out which processing functions he may be struggling with. There is suspicion that, while he is a very brilliant child, he gets frustrated and confused when trying to voice what he is thinking; which could be why he get frustrated when trying to explain something and gives up, or never wants to answer questions.

It’s almost an overwhelming amount of knowledge to take in. There is a huge ball of emotion that is now in my lap. I’m happy that we don’t have another child having to deal with ASD. Or at least I should be. I almost wish it was ASD. Then we’d have an answer that we know how to provide help for; a step down the right path. Instead, we have more questions, with only one question off the table.

It’s not Autism, but it is something.

What do we do now?

IMG_1607One of the things that has really been difficult in our house is having the older child have a myriad of special needs. I mean, I know it would be hard either way. What I’m referring to is doing all the work and research about all the issues E has (refer to my first post for a list), learning all the symptoms, all the ins and outs, then adding a second child to raise on top of that.

You start seeing signs and symptoms in all the second child’s actions. Are they in need of help too? Do they have special needs? My child hangs on me every waking moment, is that a symptom? Every decision you make is second-guessed. Every action the child takes is second-guessed. Is that a sign or did they just pick that up from watching big brother do it? It’s near impossible to tell and they sure as heck aren’t going to tell you.

From the beginning, E was different. He never slept, he was extremely fussy, he achieved milestones early, but not so early as to raise a flag. Then he was reading at age 3. From then on, my mother’s intuition would nag me. It’s like, I was proud of him, yet, when other people talked about how wonderful what E did was, or dad talked about how he read at an early age too, I felt like it just wasn’t the same thing. Still, I accepted that I had a smart son and maintained the status quo. He went to preschool, made friends in class and seemed to do just fine. Sure he had regular meltdowns at home or he could do math in his head. So what if he preferred school workbooks to toys from an early age. He was smart and just loved to learn. No biggie. “But, but…” my mind kept saying; and I kept ignoring it. I’m a worrier by nature. I over react. That’s all. He’s just super smart. Maybe he’ll go on to do great things with is life.

Kindergarten starts. Academically, he is the top student in his class but, the teacher isn’t happy with how he interacts with his peers. He always plays alone at recess. I’m thinking, “So what? Dad says he was the same way. He was a loner and didn’t really care about having tons of friends. He turned out fine.” Still… Conference after conference and it’s a problem. Finally, the school psychologist analyzes him. Our GP refers us to a specialist. He gets the ADHD diagnosis. And the downward spiral begins, so to speak.

We start figuring things out as more and more issues start manifesting. The guilt sets in for me. “I knew something wasn’t right. Why didn’t I push harder earlier? I could have helped him sooner.” I’m sure every parent goes through some sort of self-blame game. The thing is, we didn’t know. But, now we do and we are helping.

So now we move to our younger son, C. He has always seemed “average.” He played normal with toys, made friends, was very active and so on. He then goes to preschool and does great. He makes friends and get along with everyone fine. So what if he knew his alphabet before the other kids. So what if he could count so much higher than most kids his age. He’s smart too. He learned a lot from his older brother. Right?

Towards the end of his preschool experience, he starts having meltdowns at drop off. He doesn’t want to go. It’s a battle, but we get thru it and he graduates to Kindergarten. The public school does a screening process for new kids coming in. C tests out great but, he has a few “red flags” that they will watch. I don’t even know what those things are, but they didn’t seem like a big deal at the time. We take him to the autism clinic that his brother got his diagnosis from, to be assessed for any issues. Again, he tests out fine with a few ‘red flags’ but he’s too social for them to officially test him. “He’s fine.”

Now he’s in kindergarten and it’s happening again. He often complains about not feeling well. He doesn’t like how long the day of school lasts. He’s exhausted at the end of the day. We are having meltdowns all the time over the smallest things. He has started asking for tags to be cut out of more and more of his clothes or, he refuses to wear certain things because of how they feel. He is more vocal about what foods he is willing to try and gags at the smell of some (SPD flags!). He is in constant motion. He is never, ever still! He “forgets” what he did in a day at school. He struggles pushing through something he finds hard, preferring the tossing-it-aside-and-crying-about-it method (ADHD flags!). He uses his “outside” voice all the time. He knows how to read, do basic addition/subtraction and even some multiplication, but he doesn’t want us to know that he knows how to do these things.

There is no longer a psychologist at the school. The teacher thinks he’s just an emotionally sensitive kid who may need a bit more time to develop in some areas but, academically he’s fine. So, do we push and fight to “pin a diagnosis” on him? Or do we let things ride a while longer and see how he does? What if he really does have special needs and we don’t help him right away? What if, what if what if…?

What do we do now?

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