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.

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The Sensory Hangover

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

Hot Mess Mama

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…

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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

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