Box of Chocolates

Today, I have no profound news to share but, I want to tell you the story of my day.

We live in the Pacific Northwest and, as you may or may not know, we have been under a blanket of smoke for quite some time due to various wild fires in just about every direction. The air quality has been deemed unhealthy for select groups, like those with asthma and so on. Not surprisingly, E falls into that category so, we have mostly remained indoors.

Today, the air was clear and the temperature was cooler. It just screamed, “Go Outside!” After a successful doctor’s appointment, we decided to go to the zoo; enjoy the animals, get some good exercise and, generally, just breathe in fresh air. Both of the boys were on board with this idea, which is rare. Usually, one wants the opposite of the other.

As we exit the freeway, we are already seeing a long line of cars, slowly creeping towards the zoo parking lot. Then we see signs at each lot, stating that that parking lot is full. I cannot stress enough how crowded this place was. People were everywhere! Normally, I’m a person that thinks, “ugh, people…” and would head home and come another day. Today, however, probably spurred on by a feeling of cabin fever, and the boys still wanting to go, we circle the lots and head for the overflow parking. As, we are driving, E is getting quieter and quieter. We park and hop on a school bus that’s being used as a shuttle. E, still quiet, sits by the window and stares out, while C is a wiggle-worm on my lap thanks to an over-full bus. I ask E if he is okay. He mumbles that he’s fine, just tired. A typical canned response. But he is not fine. He is overwhelmed by the thought of all the people at the zoo and those riding on the bus with us. C’s activity and noises irks him. He gets grumbly.

Mind you, the ride is likely no more than 5 minutes. However, it’s just enough time to push E over the edge towards the “Tween Attitude.” When we get off the bus, C starts skipping along ahead of us towards the gate and E starts parenting him, telling him to stop this and stop that. I, then, have to chide E and remind him that I am the parent and can handle anything C does that might be wrong.

Our first stop is the bathroom. As we wait for E, C spots the “very special” vending machine. The only place he knows of to get Dippin Dots.’ (For those who don’t know, Dippin’ Dots is an ice cream snack made by flash freezing drops of ice cream in liquid nitrogen.)  I know that eating a frozen treat will make him cold, so I tell him we will grab some on the way out so that he can have the warmth of the car after he finishes it. All is well on that front for the time being.

E seems cranky but alright, and we proceed to wander. I let the boys lead and choose what we see. E loves to stop at all the educational spots: solve all the puzzles, learn all the things. Things are going well, aside from his parenting instincts refusing to wait until he has his own child. However, as we progress, maybe ten minutes into our trip, he is starting to “act out.” Now, when E acts out, it’s not your typical bad behavior or meltdown scenario. He starts growling, walking tense, and mouthing off at every turn. This is partly due to his age and partly due to his ASD. Every time I try to chat with him and soothe him, it’s like he’s smacking me but with his words. He is cranky, and I seem to be making it worse. So, I leave him be, knowing he will soothe himself eventually.

We were able to see a few of the animals that we haven’t yet seen on this visit. Usually, they are asleep in their dens or out of sight. This time however, we saw the elusive bobcats, leopards, and tigers. Now, my boys are huge cat fans, so this worked wonders to improve Mr. Grumpy Pants’ attitude.

Danger-Will-RobinsonAfter a few hours, we were all satisfied and head for the exit. C, still skipping all over creation, but getting more and more worn out, heads for the prized vending machine. I start pulling out my wallet and find that I only have a single dollar; the Dippin’ Dots are $4, and the machine doesn’t take credit cards. “Warning! Warning! Danger, Will Robinson!”

Cue meltdown moans. Quickly, I spring into action. “Hey, lets go see if they sell any in the gift shop and, if not, maybe we will find something even better!” So, we wander around and look at everything at least twice. C starts getting wild, a sure sign he is about to go into sensory overload. He wants one of everything, and can’t make up his mind. An aspect of his executive function issues is the inability to make decisions, thus becoming overwhelmed. I step in and pick something out for him and he’s happy but, he is still hung up on what to choose. Once E makes his pick, we go to pay. I ask the cashier about cash back, which they don’t do, and am directed to the ATM outside. At this point, I’ve spent enough money, and just want to go home but, C is headed for a full-blown meltdown over those dang Dippin’ Dots so, I check out the ATM. They charge a use fee of $3 to take out money, and my penny-pinching side shows up.

“I am not going to spend almost the same amount in fees as it is for the stupid treat; I just spent more money than I planned to at the gift shop. Stop spoiling this child and go home!”

Caleb is now quite put out. He loves his new stuffed animal, but is angry that he didn’t get everything he wanted. Granted, it sounds like I’m describing a spoiled brat or a toddler, but I’m not. I’m talking about my almost-9-year-old son who, pathologically, has no control over this behavior.

As I watch him stomp down the sidewalk, arms drooping, head down, I remind myself that he is trying his best. He is not on the ground throwing a fit. He is not yelling or hitting me. He is not banging his head on a wall or my body as I’m trying to walk. He is removing himself as best he can from a situation that pushed him too far.

On the bus back to our car, he wouldn’t sit with me and he kept sniffing in his overly-dramatic way. But, in the car he said to me in a quiet voice: “Mom, I’m sorry about this. I don’t know why I act like this and I hate it.”

Oh, gut punch. He is a good kid. He is trying his best with the tools he has. He is very aware of his actions and does not like them, yet, doesn’t know how to change or control them yet. Here’ another subtle reminder of the differences of autism– no one person is the same. My two boys: case in point. One has internal meltdowns or shuts down (I recently read a post explaining internal meltdowns here) and, the other, becomes hyperactive then melts down. I guess Forest Gump was right:

“Life is like a box of chocolates. You just never know what you’re gonna get.”

box-of-chocolates-forrest-gump

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Schrödinger’s Autism

It’s already a few days into May, and I cannot believe how much time has passed since my last post. So much has happened around here that it’s been hard to keep up.

Beginning in March, we had our youngest son, C, engage in a neuropsychological evaluation. This evaluation took place over several appointments and several weeks. First, the parent(s) meet with the doctor to discuss the situation. What are the parents’ concerns? What kinds of issues are they aware of? What do they hope to gain from an evaluation? That kind of thing. There is no set limit or plan to this appointment– just whatever it takes to get the doctor and parent on the same page. My appointment with the doctor lasted 3 hours! We had a lot to discuss.

Now, maybe every doctor is different, but for us, the doctor spread the evaluation out over two 4-hour appointments, on 2 different days, and 2 different weeks. This is helpful when dealing with children because these tests are exhausting! We went into this evaluation with the following existing information regarding C, based on previous evaluations:

  • He has ADHD
  • He has ODD
  • He has Sensory Processing issues
  • He is a Toe Walker
  • He has not qualified for an autism diagnosis because he is “too social”
  • He is considered Gifted and has been previously identified as a 2E child
  • He seems to have anxiety
  • He has a brain-gut disconnection
  • We don’t have a full picture of what we were dealing with

Our first session started out pretty good. C had a good starting rapport with the doctor, and we got down to business. I was concerned that the time frame was going to be a bit long for C’s attention span and compliance but, I assumed the doctor knew what she was doing. After only 20 minutes, C has a complete meltdown. He is crying, begging to go home. Saying he can’t do this anymore. We tried lots of different things to gain compliance. Most of the time, I couldn’t even be in the room with them during testing because, while I am a comfort and support for C, I’m also an instigator, and he reacts with more outbursts I’m around. We managed, with snacks, bribes and bathroom breaks to get through several, but not all, of the planned tests. C was emotional and exhausted. This set the bar of expectations low for the next several days.

On the next evaluation day, E also came with us. C cried the entire 45-minute drive to the office and dragged his feet all the way into the building. E and I waited in the lobby, and C managed to do well through the first half of things, despite the rough start. When it was time to finish our snack break and start again, he had another meltdown. E and I sat in the lobby for quite some time, listening to C cry and feel bad about himself and be difficult for the doctor. Finally, E gets up and offers to help. E was able to help break through the emotions, and help C finish his assessment. It’s amazing how well C responds to E when in this mood.

Then came the wait (I hate waiting). We wouldn’t get the results for several weeks since the doctor needed time to review the results and form a report. This doctor also contacted the occupational therapist that we take C to to get another impression of C in daily life. We homeschool both boys, which many do not understand or agree with. Doctors are among that group, especially with the issues our boys deal with on the social scale. Due to the absence of additional outside input from say, a school teacher, it makes a diagnosis even harder to reach.

Meanwhile, we are struggling to help C get through his daily routine with as little conflict as possible. Being the mom that I am, I need to know what I’m dealing with. So, I do a lot of research and read books and scan Pinterest, all in search of some trick, tip or tool that might make the difference. I try to learn about each boy’s individual needs and what works best for those needs.

During this long waiting process, which started way before the actual evaluation (talking with the pediatrician, waiting for a referral, waiting for a call back, waiting for that first appointment), I was doing my own research. I came across an interesting article that linked me to all kinds of information on something referred to as PDA or Pathological Demand Avoidance. The bare bones definition of PDA is that it’s basically high-functioning autism with extreme anxiety and demand avoidance. Demand avoidance is a condition where the person avoids any demand placed on them to an extreme level due to their need to be in control of the situation. An article from The National Autistic Society of the UK stated:

“…those who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. This demand avoidant behavior is rooted in an anxiety-based need to be in control.”

This resonated with me. It seemed like this was the exact explanation of what we have been dealing with.

I dug in deeper and shared the information with the hubs. He also felt that this seemed to fit. I printed out information. I highlighted the snot out of it. I sent the information to the doctor explaining what I’d found, adding that to the evidence. I felt excited but, knowing that I’m not a doctor, I really wanted an official diagnosis. The drawback? PDA is not a recognized individual diagnosis and is almost unheard of in the United States. All the information I was finding was from the UK and, despite their very progressive recognition of and acceptance of ASD, they are fighting their own battles to get PDA recognized over there. Still, I had that definition in my back pocket. I added it to the huge binder I keep with notes and health files for C.

binder

 

Now, almost a month after the evaluation sessions, the day comes for our results. The hubs and I meet with the doctor to review and discuss. We were handed a 20-page report! The anxiety I’ve held in all this time starts to ebb. If there are this many pages, it must mean something! It means I’m not imagining things. There are pieces missing from our puzzle of a kid. Our appointment runs two hours long, just in reviewing and discussing the large report. Unfortunately, we walked away with more questions than answers, and I won’t go into the fine details here. Suffice to say, she diagnosed C with:

First off, I was thrown by the “provisionally” aspect. Does he have autism or not? Her response was that she found C very complex and, because she didn’t have information from teachers, she couldn’t be sure. He may simply have executive function disorder and anxiety or, he may have autism, which has both of those issues included. Her suggestion was that we first focus on helping his anxiety and then we will see what’s left. Once that’s more in control, we will be better able to know if he actually has autism or not.

It’s Schrödinger’s Autism. Until you open the box, he is both autistic and not autistic. The evaluation process was stressful and difficult on C but, it was worth it to have a clearer picture of his needs. For now, I’m saying, based on my first-hand knowledge of my child, that he has autism. In fact, I am convinced he has PDA, which, again, is a sub-set of high-functioning autism, with a base rooted in anxiety. I will proceed with this opinion until proven otherwise.

Hostages

What do you think of when you hear the word hostage? Maybe you picture someone being held at gunpoint in a bank robbery or home invasion. Maybe it’s something you heard about in the news. Maybe it’s just a vague concept to you. I used to think of it as a mix of all the above.

Dictionary.com defines hostage as “a person given or held as security for the fulfillment of certain conditions or terms, promises, etc., by another.”  Seems pretty straightforward. But, why am I even discussing hostages?

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

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

temper-tantrum

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

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

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

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

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

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

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

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

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

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

 

This Is Not the Answer You’re Looking For

Back in October, our Mr. C was hospitalized for a bowel clean out. He has chronic issues in this department, and this is not our first time in the hospital for it. You can read my post about the last time here.

When the hospital took an x-ray to determine the scope of the blockage, they discovered what could be  Spina Bifida Occulta. It sounds strange to say that we were thrilled with that finding but, in a way, we were. It answered so many questions, and seemed to solve the puzzle about his chronic issues.

We are still waiting on our follow up appointment with the GI doctor that admitted C to the hospital for treatment of the blockage but, being the impatient person that I am, I called our regular pediatrician. I needed to know more about this finding and did not want to wait. What do we do? How do we help him? I had so many questions.

While meeting with the doctor, I explained to him how I had read the radiologist’s report and it said that C had this issue but no one at the hospital mentioned it to us. Did they not view it as an issue because he had something more immediate to deal with? Does he actually have this diagnosis now? The doctor was curious about it and dug a bit deeper. Apparently, Spina Bifida Occulta is extremely common. So much so that, if there are no symptoms or signs of it causing problems, they basically ignore it. The thing is, C says he can’t feel the urge to go potty, he can’t feel it when he leaks, he can’t feel it when he actually does go potty, and he often complains of his legs being sore and tired. He has these neurological symptoms that are often caused by Spina Bifida. Doc agrees that it’s worth investigation, so he decided an MRI is needed to find out more about what is actually going on in that area of the spine.

So, last week, we got the MRI done. Mr. C was so brave and he did so well but, as a mom, I struggled. All week, people have asked how I was doing. Was I worried? I thought: “Nah, I’ve had an MRI scan and it was a breeze. We’ve been through worse things. This will be a breeze too.” Then the day of the scan came, and I changed my tune. Because of the duration of the scan, he was sedated with a light general anesthesia. It is never easy to see your child be put through any procedure but, the staff was wonderful and kept me informed along the way so that I worried less. It was only took an hour but felt like forever. Before he woke up, I was taken to the recovery room to be there for him when he woke up. Poor guy– he woke with a pounding headache and was nauseated. It took longer to pass than most, but he was a trooper for being able to deal with all that on the trip home.

We were told to wait a few days before we’d have any results from the scan. That evening though, we got a call from the pediatrician’s office. “The scans for the MRI were normal,” my husband was told by the nurse. Of course, I’m in shock. What does that even mean, “normal?” Was there nothing more? Then I was furious. The scans must be wrong. Spina Bifida must be what we are dealing with. It makes so much sense. It is the missing puzzle piece. Of course, by now, it’s after-hours on a Friday night. I could get nowhere with my wrath. That was probably a good thing so that I didn’t make a pest of myself.

Sunday afternoon, I realize I’m still too fired up and unsure about the situation, and decide to email our pediatrician instead of calling first thing Monday. This allows me to moderate my questions and give the doc a chance to answer without feeling verbally attacked by a crazy helicopter mom.

First thing in the morning, I received a very brief email from him. An apology for the confusion, and a clarification. The MRI showed that C, in fact, did NOT have Spina Bifida. The only next step he could think of was trying to work with a physical therapist to strengthen C’s pelvic floor muscles.

We’re, understandably, very disappointed but, we will be seeing what the therapist we’re already working with can do for us, based on these results. The saga continues, but for now Spina Bifida was not the answer we were looking for.

Another piece to the puzzle

Last week Mr. C was admitted to a children’s hospital for bowel impaction treatment. Any of you who know our family personally, or have read past posts, are aware this is not a new issue for our family. We have been struggling with regularity for years.  

We first started working on this issue with E. Due to sensory issues related to his autism, he had issues with constipation which lead to blockage and painful elimination. This lead to fear and withholding. With a lot of work and medication, we were able to clear these blockages and retrain his body and now he has very little issues in this department.  

Now we are facing this issue again with C. We know the drill and we have tried ‘cleanout protocols’ from various doctors, yet we are not having the same success. Unfortunately, he ended up admitted to a hospital with an NG tube feeding him medicine to make things move. This is the worst-case scenario for him so far, and as unfortunate as it is, at least he is making progress to being healthy again.  

Most of what we have learned this visit is not news. He is diagnosed with Encopresis and Functional Constipation. So, we were sent home with a follow-up visit scheduled 8 weeks out and told to medicate daily with a stool softener like Mirlax and a laxative.  

Once home, I was reviewing lab notes that were available through the doctor’s web portal and learned something new which may or may not have a huge impact on how we deal with this situation long term, but was still something interesting. The x-ray that we had done to locate and officially diagnose the “fecal impaction” also caught something else. C has Spina Bifida Occulta. 

Thankfully the mildest form of Spina Bifida and we really don’t know yet how this will evolve as C grows and we deal with his various issues but it really does help add another piece to his puzzle. This could be contributing to his elimination issues and may even be a factor in his ADHD diagnosis. I’m constantly fascinated by all the tiny things that add up to an issue. Time to study more and learn as much as I mother can and make more notes in the ever grown health binder I keep for these boys.  

0 to 60 

Are we really moving forward, or are we stuck in a loop? That’s a question that runs through my mind almost daily now. We’ve been in our new location for almost 4 months and things continue to feel more like home.

The issue causing me worry is, are we doing too much too fast? Do we really need to be going 60 miles per hour so soon, or would a slower pace be better?

Before our move, we had the boys taking speech, occupational and physical therapy. It was hard to have all three therapies fit in one day for both boys and it was hard to take three days out of every other week to make them happen that way. We had homework assignments, but they seemed simple enough and we were able to get that done.

We are still doing these three therapies but now doing them each week and not all in one day. The appointments are more spaced out and things should be simpler but, for some reason, they are not. The boys seem to have more therapy homework and seem to be having a harder time coping with the added load. In addition to these sessions, Mr. C also has started vision therapy, which also has homework.

We moved and hit the ground running. We got our doctors in place, and got really good therapists. So far, they have seen things we hadn’t yet, and we are learning more about our boys’ needs. Different ideas are being tried for their sessions.

For example, our speech therapist noticed that Mr. C probably has an issue with chewing and jaw movement, not just how he uses his tongue to speak. She noticed that both boys have trouble with sensing time so she has us working on estimating how long things take. She has us using games to help the connection between brain and body. Not exactly what you picture when you talk about speech therapy, yet it is all part of the bigger picture.

C needs his vision therapy because it plays a big part of his processing issues. Both boys need physical therapy to help strengthen the core muscles of their body and gain strength which they are behind average on. They need occupational therapy to help them learn how to cope with their sensory processing issues and writing skills. All these are all important.

It’s amazing, it’s wonderful. We have been so excited to have access to all the services that we need for our kids within an easy distance. However, I now wonder if we’ve taken too much on at once.

They need these therapies. We wouldn’t have gotten the referrals if they weren’t needed, but now we are being told that it’s too much for them. We are being told that most people don’t do three or four therapies at once.

It’s overwhelming. How do we know if we’ve made the right choice? We feel like the boys need each one of them, but how do you choose which one to pause until a later date? How do you tell your child that they need to wait to learn how to see better because they are overwhelmed and need fewer activities? Or do you tell them that they have to wait to learn how to cope with things that overwhelm them?

As a parent trying to give my kids the best leg up I can, I’m choosing not to tell them that. I choose to continue therapy as it is, knowing it may be a bit much right now. Doesn’t that teach them adult skills as well? As adults, do we get a choice to “pause” this obligation or “take a break” from that situation? No. They are young and resilient. They may have challenges, but they will adjust. Part of that is dependent on me as the primary caretaker. If my attitude promotes success they will succeed.

So, while it may be challenging, we’ll continue this 60 miles per hour pace we’re currently at.

I just hope that I can handle it.

The Next Chapter

                “You can’t start the next chapter if you keep re-reading the last.”  -Unknown

It the past five months, our family has been working on the draft of our next chapter so to speak. Late last year, it became increasing clear to my husband and me that we were circling round and round in our current “chapter of life,” not making progress, and something needed to change.

I was taking the boys to their speech, occupational and physical therapy sessions three hours away, every other week. That therapy clinic was wonderful to work with. They understood that we could not possibly attend these appointments weekly so, all their staff sat as a team to come up with a schedule that worked for us. They put each boy’s three appointments together, on the same day, for a total of six appointments. They honestly cared and did their best to help us. The challenge was for us to make that work. We had to be there first thing in the morning, and we usually left about 3pm. Travel to the clinic sometimes required an overnight stay in order to make appointment times and ferry schedules work.

The boys did well in their sessions, but it took so much out of them. It would take them about a full week to recover from their three days away from home. We termed these “hangover days.” Those were days with many meltdowns and angry outbursts due to over-stimulation and heightened anxiety. On those days, it felt impossible to leave our home, even to make a quick stop at the market. What made this harder was integrating school into all this. On therapy weeks, E would go to OT at the school, the boys would meet with their teacher for their weekly check-in, then we would rush to catch a ferry for their appointments the next day, staying with family that night. We occasionally would come home the day of therapy, but that was so hard on the boys, who were worn out after three therapy sessions in one day, that we usually stayed a second night.

This left me with very few good days out of every two weeks. Good days were needed to take care of my other responsibilities. I was more than exhausted; the children were unmanageable; it could not go on.

So, after much deliberation, stress, and tears, we decided that we needed to sell our house and move to a more suitable location. This was a very painful decision. We’d been in that small community for more than 20 years, and in our home for about 9 years. My husband had grown up there. We’d planned and designed that house. Hubby’s father had built it. So many special memories. However, family comes first, and we needed to be where we had easy access to the various services that our boys needed– somewhere that could offer them more resources and a calmer routine.

Our house sold in just three weeks, and we had about a month to pack, find a new home, and a new job for my husband. On the weekend following accepting the buyer’s offer, we put our dogs in a kennel, packed up the kids, and headed off to find a home. One of the homes we saw, we loved, and made an offer on. While on our return trip home, we found out that we had lost that home in a bidding war. The real estate market in the area was so “hot” that homes were selling for about 10-15% above listing prices. Many homes were priced out of our budget. It was going to be a challenge to find something.

We needed to go back and look at more houses– the pressure was on and the clock was ticking. How were we going to do this? We knew that the kids couldn’t handle a weekly journey full of house shopping, so the hubby and I decided that the best choice was for him to go down on weekends, work with a realtor, and video conference with me at the homes so I could “look” as well. That allowed me to get a head start on packing, and we didn’t have to kennel our dogs again. We spent our evenings online together, making lists of homes that we wanted to look at. Our agent was awesome and worked really hard to find a good fit for us. One weekend, we put another offer in and, again, lost to a higher offer. While hubby drove home, I went online once again to put together the next list of homes. Stress was at the max.

The boys were acting out, reacting to the unsettled mood of the house, familiar things packed up, moving boxes everywhere, the loss of their stability and the only home they had ever known. We suspended our therapy schedule. I just didn’t have time to make that trip and pack up our home.

When hubby was home, we reviewed the list of homes, talked about others he had looked at, and we came across a home that we hadn’t seen– fresh on the market. It was the right price, the right location, and the right size. We called our agent and the next day she arranged a video tour for us. We love it and put an offer in without seeing the house physically in person. Scary! The sellers accepted our offer; even more scary! What are we doing? Are we crazy?

Hubby went down that weekend and walked through the house for the first time while the mandatory property inspection was going on. Everything was good, only a few minor issues. Finally, we had a home to move in to. Everything seemed to be working out. And it did!

The house is wonderful, and we are slowly settling in. The boys have their own bedrooms, which makes giving them space on rougher days so much easier. The house is carpeted and has regular, flat ceilings (verses our previous hardwood floors and vaulted ceilings) so the noise level is much lower and easier on everyone. Everything we need is within about a 30-minute drive. 

We already have established ourselves with a wonderful pediatrician and in the past month set up appointments to start speech, occupational and physical therapies again. We were able to get C in to an optometrist that also does vision therapy, for a second opinion. It turns out that, not only does C have Binocular Convergence Insufficiency  but, he also has double vision. The doctor said that his condition is moderate to severe, and he definitely needs vision therapy. This was an a-ha moment because we are still struggling with getting C to engage in school work. If he sees double words, double lines to write on, and so on, it’s no wonder that he hates school. So, one more therapy is added to our soon-to-be weekly schedule. Just another plus to living in our new town.

The job situation is still in flux and the hubs has been commuting back to our old town and staying with family during the week, which is hard on him and the family, and makes settling in more challenging. We still have routines to establish, things here and there to tweak, and personal touches on the house. Needless to say, these two months have flown by in chaos but, we survived and already have a good feeling about the next chapter.

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.

#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.

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