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.

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

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

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

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

An article in Psychology Today states:

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

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

Recently I read an article on 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 let 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.

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.  

Last Night I Cried

I tried not to cry as I woke up to the sounds of boys screaming at each other. 

I tried not to cry as one of them came sobbing into the bedroom with hurt feelings. 

I tried not to cry while I had breakfast and listened to and watched my sweet E stim to calm his nerves.  

I tried not to cry as I discovered that our new puppy had suddenly gone lame and could not stand on his own.  

I tried not to cry as I headed to the hospital for an x-ray on Mr. C for another bowel impaction. 

I tried not to cry as I saw the image on the computer of a bowel so packed that I’m surprised he was able to walk around normally. 

I tried not to cry as his hospitalization was confirmed and we were admitted to our room. 

I tried not to cry every time he cried because he was scared and starving from the liquid diet restrictions. 

I tried not to cry as he was sedated before having an NG tube inserted into his nose.  

I tried not to laugh as he got goofy on the sedation and started talking nonsense and being silly. 

I tried not to cry when I had to assist in holding him down and restraining him as he screamed and cried, begging them to stop putting the tube in his nose.  

I tried not to cry when we went through that fight three more times before the tube was successfully in. 

I tried not to cry when I found out that we had to return our puppy to the shelter for long term care and potentially give him up if his health is just too bad. We’re already so attached to him. 

However, when the lights were down, and C was finally asleep, I laid down on my couch-bed in a sterile room and I cried.  

I needed to be strong, to handle what was thrown our way, and get my boy through the day that seemed unending and horrible for him but, I also needed a moment for me. I needed to release some emotion and stress. 

I’m sad that my adorable C has to go through this. 

I’m sad that this is the fourth time in the hospital for this. 

I’m worried about my dogs, both at home who have adapted to the new addition, and for the one we may not get to keep. 

I’m worried about my kids and my husband. 

I miss my own bed. 

This morning however, I feel refreshed. I’m me again. Calm, cool and collected. I will get through today and have a positive outlook. Just another reminder of the need for caregiver self-care. It’s so important to do something for yourself every day. Our lives are hard. Obstacles are thrown at us all the time. We need to have our “game face” on at all times. To be ready for anything. But, every once in a while, we need a break– we need “me” time. Even if it’s just a moment to let us feel, to cry, or to just sit and stare out the window. It allows us to carry on. 

So please mommies, daddies or other care-givers out there, remember to take care of yourselves too. 

Weighted Blankets and more

A lot of changes here on the site. I’ve rebranded as Chasing Calm – Adventures with Quirky Kids and have a new look to my blog. Please be patient as I work on these changes. You may even see a few reincarnations on the blog while I work to find a look that really feels like us.

The “About” page has also been updated. Nothing earthshatteringly new, but it was a wee bit out of date. The home page is now set and the blog posts are on their own page. Let me know how it feels. I debated changing all these things, and do feel a bit out of my league, but it also feels good to get a fresh look. Sort of like how it feels good to get a pedicure but you aren’t sure if you went with the right color.

Recently I opened shop on Etsy under the name ChasingCalm. At this point, I offer a variety of weighted blankets, lap pads and eye pillows. These products help to calm kids when their senses are overloaded, and are known to help them sleep better. Everything I offer can be customized to your needs and specification, and I hope to add more products soon.

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 Straight Poop

One of the biggest challenges we’ve faced with Mister C is regular bowel movements. At 7 years old, you’d really expect the child to be fully potty trained, and he was, at one point. As a baby and toddler, he had no issues with poop, and we didn’t notice any problems. He graduated into big boy undies and everything. It was no longer something we worried about. He was trained.

Then, as he grew, bowel movements became less frequent. He’d go once every few days. We stated keeping tabs on him because we had previously dealt with chronic constipation with E. With C, when we would notice that it had been a few days since he went last, we’d slip a dose of Miralax (polyethylene glycol 3350) into what he drank, and it seemed to help keep things flowing (so to speak). Of course, Miralax and other similar medications only work if you drink plenty of fluids. Thankfully, our boys have always been big water drinkers.

At the beginning of the year, about the time we started our mega trips every other week to OT and PT, we stopped paying much attention. We’d ask if he’d gone and get the “I can’t” or “I don’t need to” type of answers. So, we’d add a bit more Miralax into his diet and increase his fluid intake and hope it helped. The problem is that, with traveling every other week, his body had a hard time keeping up with its own needs. Many people suffer from a bit of a “plug up” when they travel, so it’s easy to understand that a child with sensory issues would struggle even more.

Back in early April, after a few months of this back and forth therapy routine, I realized that C’s poo issue had completely slipped my mind, and I tried to remember when he had last actually “gone.” He had been “leaking” into his underwear for some time. How long had it been? I realized that he had not gone in weeks, possibly a month! Boy, did the guilt slam into me. This had previously been an issue and, back in August, he had to be flown to the ER because he was so blocked that he couldn’t even urinate. Fear flooded my mind as I imagined having to go through that ordeal again.

Hubby and I discussed what we to do. We decided to follow the hospital-directed protocol we had previously used with E for a “cleanout.” This cleanout consisted of large doses of Miralax and a laxative each day until he went, consistently encouraging him to drink water and scheduling regular, timed trips to the bathroom. After a few days, he was obviously not doing well– he was constantly leaking, and smelled of poo all the time, plus he wasn’t eating well, which caused him to not feel well. We couldn’t leave the house with him because we were waiting for the “big moment,” didn’t want to embarrass him since he smelled, and usually needed fresh clothes throughout the day. When this process wasn’t showing results, we tried an enema, per our pediatrician.

We did three or four over a course of a week with NOTHING to show for it! We’d been using every tool at our disposal and no rewards. So, we finally make the decision to take him to the Children’s Hospital ER. That, in itself, was not easy– an hour ferry ride plus about a two-hour drive. We could have gone to a much closer hospital but, we wanted child specialists; a place that might understand the sensory issues involved.

Once at the hospital, we spent several hours waiting. We had an amazing nurse that was very understanding and seemed to really want to help. He even went to bat for me with the doctor when we were being sent home and I wasn’t in agreement that that was the right move. Basically, the doctor said, because he could still pee, C was not an emergency situation, and there was nothing they would or could do until we tried their cleanout protocol. It was basically what we had already been doing but, with a specific laxative. I was told to go home and keep using their protocol for cleanout and come back in three days or so if there was no change. To that doctor, it did not matter that we had been trying for a week, that there was a history of blockage, or that there were sensory issues involved. Needless to say, I was not a happy mommy. C was thrilled to go home though. He was bored sitting around with nothing to do. So, we spent the next week doing the same thing but according to that hospital’s rules, with another enema, all with no results.

So, we headed back to Children’s Hospital and, thankfully, we got a different doctor who seemed inclined to be as helpful as possible. They dosed C with more laxative and waited a bit to see how things progressed. Eventually, after much waiting, they tried a special enema, and we waited some more. Now, my experience with hospitals usually involve rooms with private bathrooms. This place didn’t have that. The poor little guy had to walk down the hall in a ridiculously short hospital gown, trying to stay covered in front, me keeping it closed in back, all the while needing to potty really bad! Eventually, he was able to go some, how much was unknown though. After he finally went, they decided to get an x-ray to look for blockages. Because they had no previous scans to compare it to, it was judged that he was cleared out, with only pockets of gas remaining, and we were sent home.

In theory, now that he was cleaned out, we should be able to keep him on a schedule and I even started a “Poo Diary” as I called it. I needed to be sure that he was going regularly. We did not want this to happen again. Again, despite this kid eating normal and staying hydrated and being given medicines to keep things soft and flowing, he was not going daily, or even every other day. And, he was still leaking into his underwear.

It was around this time that we decided to sell our house and move to an area that could better serve our children’s needs. So, now, four and a half months later, we are settled in our new home, have found a wonderful pediatrician for the boys, and even have all their various therapies lined up. On our first visit with the pediatrician, we talked about C’s issues with regularity. After all this time and effort on our part, he is still having issues. His leaking was so bad that we had to switch back to pull-ups to contain the leakage and keep it from staining his pants and any furniture he sat on. He still doesn’t want to sit on the toilet, “afraid he’d miss something” or, “it takes too long.” It doesn’t matter if we sit with him or even give him the iPad to play games on. Nothing can make this kid spend time on the toilet. Part of that is connected to his ADHD and part to his ODD. The pediatrician offered yet another “cleanout protocol” for us to try. He wants us to keep up with it and, if things don’t improve, we may need to see a GI specialist.

Regardless, nothing was helping. At times, we’d send him to the bathroom to try to go and he’d have already gone in his pull-ups and not even been aware of it. He can literally sit in his own poo all day and not realize he’s gone. He tells us he can’t push it out, he never knows when he needs to go, and he doesn’t even feel it when he has gone in his pants. So, this is our new normal: tactfully telling our son that he stinks and needs to be cleaned up, cleaning him up several times a day, making us feel like we have a toddler again. Nothing seems to help, and we are planning on consulting a GI specialist to see if there may be a physiological disconnect or something else preventing him from being regular.

While we work on the investigation, I’ve started trying to incorporate a more natural lifestyle in the hopes that it’ll help: fewer chemicals, eating healthier, and so on. One of my new favorite things are essential oils. It started out with a roll-on stick that I got at a local farmers’ market before moving. It has peppermint and lavender oils and I use it to help with persistent headaches. For me, it worked just as well as taking a handful of pills. I’m sold. I promptly went out and bought some oils and a diffuser at our local drug store. I noticed that E seems a wee bit calmer when I diffuse certain oils. Interesting. Then a close friend talked to me about a specific brand of organic and pure oils. We talked back and forth about what we’ve learned and what’s been helpful. After some time and research on my part, I found that there are a lot of oil combinations that are said to help focus the mind, calm anxiety, and aid with so many of the common sensory and autism issues in our house. I have had so much fun experimenting to find combinations that help my boys. They love picking what “smells” we have for the day. My husband is less enthusiastic but has been very supportive.

So, after a while, I found that there is an oil that supports digestion. I’ve tried it, it works. Then I discovered a blend for helping kids with tummy issues. So, I got it and tried it on E one night, when his stomach ached at bed time. He calmed right down and fell asleep easily. Very interesting.

Now for something really amazing: Two nights ago, C asks me to please put those two oils on him at bed time because he’s been so miserable and embarrassed about his poo issue. So, I slathered him up with the tummy oil on his tummy and put the digestion oil on the appropriate points of his feet. The next day, C had a nice large poo. I didn’t think much of it because he has been having regular doses of Miralax, though not daily. Last night, he asked me again. He said he thinks it helped him and wants to do it again. So, he gets the oils again. Today, another large poo! I’m ecstatic. He is thrilled, and asked me to do the oils again, tonight. I am convinced that these oils are going to be the tipping point to getting him in a regular habit. Only time will tell but, I think I see the light at the end of the tunnel.

If you are interested in hearing more about how aromatherapy has been helping my family, send me a private message and I’ll be glad to talk with you.

The Sensory Hangover

This. This is a great way of describing our “sensory hangovers” that I spoke about in my previous post.

Love & Wildflowers

Too many people, too much noise, too many colors, too hot, too windy, feet hurt, weird smells, aaaggghhh! Kind of annoying to even read that, huh?

Recently, my husband and I braved our own social anxiety to take our kids to the most crowded, overwhelming Easter Egg hunt ever. There were people everywhere, parents shoving kids aside to grab a dozen eggs, and children in every direction getting separated from their families. It was hell. And the poor kids had nothing to show for it because we couldn’t push past the throng of overbearing helicopter moms for my own kids to grab a damn egg. This was strike one.

After the failure of an egg hunt, we decided to make the most of it and stay where we were, which was a popular local boardwalk. Lots of rides, lots of memories. Our kids had never been, so we decided it…

View original post 762 more words

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.

Too Much Information

Written by Beatrix, aged 8.

To some of us autistic people it’s like a big dangerous world out there that we just don’t understand: having Asperger’s is like constantly having a heart attack that can’t kill you. Walking into a room full of people is like trying to look into the sun. I would just […]

via Too Much Information — Dirty, Naked

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.