I really have to tell you about the past month. Thanks to my brother we discovered kefir. You may have heard about it. Brother John came to visit a while back and was touting it’s benefits. It is a cousin to yogurt but different. It has probiotics and natural “good” bacteria that are supposed to help the intestines. Johnny was impressed that it helped with his stomach issues and an added bonus that he had lost some weight.

I won’t get graphic. (I’m reminded of the old Pepto Bismal commercial where no one would say the word “diarrhea.”) Suffice it to say, Matthew has struggled with this problem for years and years and years.  When we realized he was lactose intolerant and stopped dairy  he improved. Years later when we discovered that he had Celiac Disease and went on a gluten free diet he improved a lot more. But still, there were days…

So when Johnny talked about the kefir my ears perked up. We’ve stayed away from yogurt and similar products because of the dairy and lactose. I read up on the kefir and like yogurt it is a fermented milk drink. (I know, sounds nasty… but those old goat herders obviously were on to something.)  I went to the store and found the kefir. There is a giant label right on the front Lactose and Gluten Free. We got a bottle and tried it. Amazing things happened. The first week I called it a fluke and didn’t say anything.  The second week I told Bob about it and we got another bottle. By the third week I was starting to think this might be real. And yes, it’s been 5 weeks and Matthew has not had one bout of diarrhea since we started! Amazing. A small glass at night with a couple cookies and it seems a treat.

Like yogurt kefir has a tanginess. It is commercially produced though I have found recipes to make your own. We are getting the flavored kefir for Matthew which has a pretty high amount of sugar. (My mom tried the plain as it is lower sugar but strongly says it tastes nasty…) We found some splenda sweetened kefir online but not had success finding it in the stores. We have found several brands of kefir in the health food stores but also at some of the regular grocery stores.

For Matthew this has been an surprisingly good experience. And for once, it didn’t cost us an arm and a leg.  As always, I’m happy to share more details with you. If you know someone suffers maybe it can help them too.

The Squirrel

Just saw a squirrel sneaking around the grass in my back yard. Squirrels aren’t too common in the valley…at least not my part so I always take note. I don’t know what this guy was looking for. Sometimes they come for the apples are on the tree. Today he seemed to be enjoying some of the weeds. So today he is my friend. He also reminded me of a funny experience a few years back.

One day I was at a school board meeting at our parochial school where the teacher/principal had informed us she could no longer handle both duties and resigned as principal. After sharing this information she returned to finish up some work in her classroom. The meeting continued and we were busy discussing how we would handle this new situation when suddenly, a squirrel snuck in the open door. Once spotted the meeting quickly went to pot and the group jumped up.  Soon we were hooping and hollaring trying to shoe the squirrel back outside. It was very funny to see Pastor using the broom as others flapped their arms to chase it back. Finally, squirrel returned to the “wild” where he belonged, we shut the door and resumed the meeting.

A little while later the former principal walked back in. We told her about the squirrel. She had heard all the noise and laughing and was glad to hear what it was…she thought maybe we were having a party celebrating that she quit.

The Pizza

Last year following the first or second surgery my parents moved in to help. They had plans to spend the winter in the desert and search for gold. Instead they dropped everything, packed up all their stuff and came home. “We are family, “they said. “We’re to help.” And help they did. They entertained Matthew and kept Rebecca busy. They made sure Bob had someone to talk to and were a shoulder to cry on. They cooked and cleaned. And on one occasion they made pizza.

You may recall that our house is gluten free. That means we can’t order a pizza from the place down the street.  Because of that I keep in the pantry a gluten free pizza crust mix. We make it up and add our favorite toppings. 

One day following a chemo treatment Mom wanted to know what I could eat for dinner. (Chemotherapy can do nasty things to one’s appetite.) Surprisingly, a Hawaiian pizza sounded tasty. I must have been delirious as I remember telling Mom that it was fast and easy to make from scratch.

My parents are pretty good sports and willing to try anything so they decided this would be supper. After finding the mix Mom decided that the directions were too small. She needed help…”John, come read this for me.” Apparently, too, the directions were more complicated than they expected. Hilarity ensued as they talked back and forth questioning both the directions and then each other. “When do I add the yeast?” “How long do I mix it?” “Do I need eggs?” “You need eggs?” “What kind of oil?  –Where’s the olive oil?” “How long should it rise?” “Why is it so sticky???”

With one reading and one helping and a third searching for ingredients I thought I should help. Instead I feigned sleep and lay quietly on the couch snickering. It seemed like it took forever to get made but I’m pretty sure my memory was dimmed by the chemo and most likely I took a nap. I know it smelled delicious as it baked and everyone enjoyed it.

Now when I make pizza I always think about the one my folks made. It was funny watching their efforts. But,  what I remember most is how they dropped everything to come and keep some semblance of order in our suddenly chaotic lives.  Family–yep, glad we have them.

Want Company?

Do you know someone with a special needs child? Do they come visit very often? Chances are the answer is no. As parents of a special needs child we know all too well how challenging it is for our son to follow all “our house rules” let alone those at someone elses house.  When Matthew was younger we rarely visited people unless they were very familiar with our needs. Even going to family’s homes could be traumatic.

When Matthew was young we visited my sister. Normally this was a pretty safe bet as she and her husband were good about helping monitor our then hyperactive child. This trip though he zipped into the other room and before I could react had opened the new inherited Grandfather clock causing it to tip over with a crash. Fortunately, he was not squashed and the clock was repairable. Trust me though, I wished we could dissolve into the floor at that moment… It served as a strong reminder that other’s homes were not usually Matthew proof.

He doesn’t look like trouble…

We were reminded of younger days recently when a friend came by with her challenging child. This young person often acts rashly and as a result doesn’t get to practice appropriate behavior. It’s tough to be the parent.

The sad part is that the only way our special needs children can learn to behave appropriately is if offered opportunity. Fortunately we have family and friends who actually would invite us over. And over time Matthew learned what he could or couldn’t get into.

Maybe you know someone with a special needs child and would like to help. You would be a blessing but there are some things you should know.  There’s often little privacy–our kids may look in the medicine cabinets, refrigerator, laundry room, at your magazines, etc. They may want to touch everything. If they decide they are hungry they may just go into the frig or cupboard and look for a snack. If the parent comes to visit with more than one child you can expect that the kids will go in two different directions and you might have to help a bit.

If you invite your friend over try to be understanding if the child’s needs suddenly jump and the parent has to leave. We parents don’t like our children to misbehave or do foolish things. A five minute visit might be all the child can manage for the first few (or even many visits).  Preparing for a visit is much like when a friend brings a young child–if you know the child likes to touch things and you have a favorite collection it might be easiest to sit in a different area or close the door to the room. Grandmas are used to putting up fragile items. If the child likes to watch television maybe a planned visit when his favorite show is on or invite him to bring a video. With Matthew it won’t keep his attention–too much else to look at when at someone’s house but it often serves as a good redirect. If you want to serve food it’s a good idea to ask ahead of time if the child has any dietary restrictions. There is nothing worse than accidentally offering a goody only to find that the child has a food intollerance to it. Taking the food away once given still causes a meltdown with Matthew.

After lots of practice, patience and time we are now able to visit many friends. It’s good for us.  It’s good for Matthew.  And I think it’s even good for the friends.

The Guessing Game

Knowing what a nonverbal child (or adult) is thinking can be a real challenge. With my son I generally can guess what he is trying to tell or show me (it’s the usual: Batman, Superman, Mr. T, or reading the TV Guide with Matlock, NCIS or another favorite show). But some times even mom is challenged…

A while back we had an electronic device that plugged in to the computer and  you could download information to special chips. (I think it was part of a reading program). We hadn’t used the device but thought we might one day so it floated around the house. It was a little bigger than my hand, green and had a cable. I didn’t think twice about it until one day when Matthew started carrying it around. He showed it to me and I responded that yes, it went to the computer. But I could tell that wasn’t what he was seeing.

The next time I saw Matthew with it he carried it outside and set it on the porch. Then he looked at the sky. It made no sense. I asked him what he was doing and of course his only response was to show me the device again. This went on for weeks. What in the world was he thinking? I had no good ideas and it seemed all my guesses were wrong.  But one day it struck me. I realized I had seen that very thing and I had seen his actions…in a movie.  It was Ghostbusters. And the device (to Matthew at least) looked like the ghost catcher from the movie. He was setting it down, stepping on the cord and pretending it was catching a ghost.

I laughed as I called Bob to tell him I had figured it out. Matthew was happy that I finally had. Now he could show company his treasure and mom could explain just what he was imagining.