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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They Are Champions

Recently, I took my boys to see some of my family. It’s about half a day’s drive; not too bad but, you just never know how it will go. I packed us up: car activities, movies, tablets, snacks, and hit the road. I’m a huge fan of road trips. You get to see so much that you’d miss if flying. This wasn’t so much of a journey as a get-from-point-A-to-point-B kind of trip, although the scenery was beautiful.

This week-long vacation was a bit new for us. In the past, dad came along with us and we had stayed at my parents’ house but, this time, we would be staying with my sister, which meant new surroundings and one less parent to lean on for support.  So, I braced myself for trouble. I fretted pre-trip and worried each day as to how the next day would be. As you may know, new surroundings, new circumstances, and non-typical people all can throw a wrench in the works for our kiddos. But, it wasn’t as bad as I thought it would be. The boys got to see their Nana and Papa each day and had two aunts to play with.

Each day started early, relaxing with coffee on the patio. We visited, listened to the coo of mourning doves and enjoyed the cooler temperatures. As is typical of the high desert, by late morning it was very hot so, we spent most of our time at the pool, where there was a beautiful, shaded lounge area off to the side, along with music, snacks, drinks and laughter. The water was warmed by the sun and we were the only ones around to enjoy it. The very definition of summer fun.

Now, E had taken swim lessons a few years ago. He got quite good and loved it, until one fateful day he was practicing with a small float board that darted out from under him, and he thought he was going to drown. Though he did get back in the water after that day, he seemed to enjoy it less as his worries and fears got in the way. Mr. C never did end up with much in the way of lessons. He hated the feel of the water on his skin, he hated that it felt cold, etc. I now understand that this is part of his sensory processing disorder but, at the time, I just didn’t get it.

But, I digress. These previous experiences added up to a new set of worry for mama bear. Are they going to enjoy it? Will they have fun, or will they find something new to be afraid of? Will they be able to use life vests or floaties? Lions! Tigers! Bears! Oh, my!

Thankfully, all my worry was for nothing. The boys did amazing! E preferred to use a life vest so that he could have full use of the pool without the fear of sinking. C didn’t care if he had it on or not. By the end of the afternoon that we arrived, C had his face in the water with a snorkel and mask, swimming from one end of the pool to the other. By the end of day two he could do it without his life vest. This is a kid who was nearly eight before he could stand to get his face wet in the bath. When speaking to his aunt about how he learned to swim so well, he said, “I just watched the techniques and practiced them. I basically taught myself how to swim!”

This kid cracks me up! No humility there. And boy, is he fearless! He went from not really having lessons, to snorkeling, to trying to dive and swim under water. He even tried surfing on a boogie board!

On a few occasions, friends from the area came over so their kids could swim, and C would appear to be happily swimming by himself at one end but, we caught him slyly watching the other kids. He would see something new and then want to try it. He even asked them for pointers. Thankfully, the other kids were wonderful, and had great manners so, it went very smoothly. Social skills practice? Check!

E took a bit longer to feel comfortable in the water. In fact, it wasn’t until our last time in the pool that he braved his fear, and took the life vest off. I’m so happy that he did. He did amazingly well– his skills came back to him easily. He was even able to swim short distances under water.

On another day, we decided to play at the nearby lake. Again, local friends to the rescue. We were provided with a private beach to play at, which included a shaded cabana, giant buried trampoline, kayaks and paddle boards. Now, I personally have kayaked only once in my life but, I remember loving it. Unfortunately, I’m still in recovery mode from my back surgery in May and didn’t feel comfortable joining in the fun. I had to satisfy myself with wading into the water or lounging in the cabana with drinks. (Awe, shucks!) It seemed like a too-good-to-be-true type of place. For E though, it was. There were dragon flies, regular flies, bees and other flying things out. It didn’t really bother me but, for a kiddo with phobias (Entomophobia), they were swarming! He had a mini panic attack. Thankfully, we were allowed use of the friends’ house as well, and E was able to be inside in the cool air, away from the “horrific” bugs.

As a mom, that day was frustrating and hard for me. I wanted him to have the same experiences as everyone else but, I knew he just couldn’t. I was frustrated that I had to monitor him, and broken-hearted that he just can’t have fun like the rest of us. Having my family with us was a great support though, and they shared the responsibility so that we all could have moments of relaxation and fun. What really surprised me though, was, that despite his fears, E would, occasionally, make the trek from the house to the water and jump in a kayak or on the paddle board, and head out onto the lake. For a little while at least, he could lock those fears away and try something new.

Both boys just blew my mind. They had never been in a kayak or used a paddle board before, and yet, they were so good at them! E loved being out on the water. He’s always been drawn to water. Seashores are his favorite. He finds it soothing and peaceful, which is a wonderful thing for someone with an anxious mind. It was such a confidence boost for these kids to excel at something.

All in all, we had an amazing getaway, and I have been beaming with pride and awe at how well my boys did. They are champions! I am such a proud mama!

 

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.

We Got This

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

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

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

houston-we-ve-got-a-problem-1

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

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

An article in Psychology Today states:

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

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

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

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

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

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

Healthguide.com also had some good information. You can read it here. It says:

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

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

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

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

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

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

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.

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.

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