A Special Palm Sunday

I joined Rebecca for Palm Sunday services in Mesa. The church had palm fronds everywhere and began with a big processional. It reminded me of a very special Palm Sunday we experienced a few years ago...

For Rebecca's graduation we planned a fun trip to Germany, France and Switzerland. Schedules worked out so that we could go during  her spring break from school. I diligently planned our route and reserved hotels for each night. I printed out town information, directions and when available, pictures of the hotels. It was a good plan but...

At the coast of Normandy we got caught up in the WWII history and spent extra time at the museum and beaches. We were reminded of all the history and mourned the loss of so many brave troops. By the time we were ready to leave it was already dusk. Bob stopped at a gas station but for some reason it wouldn't take his VISA card.It was not a worry as we still had plenty of gas. Over the river and through the dale we went, following the map to the next town. By the time we got there it was dark so we decided to stop at the McDonald's and see if someone could help with finding our hotel. Fortunately, a young gal working there spoke good English. She looked at the information and gave us some quick directions. "Just five minutes," she said. "Up the hill, around the corner, center of town, etc."  Off we went. Up the hill, around the corner, center of town... No hotel. So we tried again, thinking we'd missed a turn. No hotel. (Mind you we had already discovered that hotels in Europe aren't nearly as obvious as those in the US.) But, there we were in the center of town, Patton Square, and there was a pay phone. (Cell phones with international chips were not yet in vogue.) Unfortunately, the pay phone did not take money and I did not have whatever it took. What to do... Since we were in the center of town there was a small restaurant across the way. I went in to ask for more directions. Between my poor French and the guy's poor English I thought we had it figured out.  Straight down the road and around the corner. Again, we searched and again, no hotel. Around and around we went. And it got later and later. Suffice it to say it was pretty quiet in the car. Finally, enough nonsense and we went back down the hill to the McDonald's. Even though it was now late that young girl was still working (no one else spoke English!) But more than the hotel at this point Bob was very worried about getting fuel for the car. We could keep searching if we had a full tank. Asked the girl where the closest gas station was, "Just down the road... 5 minutes," she guaranteed us.

We got back on the highway and I confess to being near tears. The kids were silent. After leaving the McDonald's it was pitch black. We were most definitely in the country. The miles ticked by and it seemed like an eternity but... in 5 minutes there they were, lights of a town. And, what was that on the left? It looked like the sign for a Holiday Inn. Big, neon green and oval. It looked like a hotel. And look, across the street a grocery store and gas station. We pulled in to the parking lot exhausted. There was an automated pay machine and we were able to choose a family room that would have enough beds for all. It didn't matter, we would have slept on the floor at that point. The other hotel, now far from our minds we quickly settled in to sleep.

The next morning Bob got up and ran across the street to fill up the car. We were headed to Mont St. Michel, an island abbey, in the bay. But he was back too quickly. The darn credit card didn't work and the gas station was closed. Bob had stopped and tried to talk to the clerk in the lobby but only found out that it was Sunday. So we both went back to the lobby. The clerk said, "I already told you. C'est dimanche! (It's Sunday!) Quelle dommage! (Too bad). The stores aren't open. This is France!" (The guy said some other stuff... I think he said we were stupid Americans but it didn't matter... Sunday was Sunday.) So we talked about our options. We could stay at the hotel and twiddle our thumbs all day. (I had packed enough snacks that we would get by.) Or, we could test my French further and try to find someone who could help us.  There were a number of people eating breakfast in the dining area. For whatever reason I focused on a young man with his daughter. To our good fortune,  he spoke English but not only that he misunderstood our question and got his wallet out to give us gas money. After we explained about the credit card he understood and then explained to us, that because our card was not from France many automated machines would not take it. The card had to be okayed by the operator. He was from Ireland and had a credit card but was not sure whether it would work. Still, he offered to go with Bob back over to the gas station and left his daughter with me. My guess is Bob and I are not very scary looking people but still, what faith in humanity. In a few minutes they were back with a full tank of gas. Bob gave him cash and our everlasting thanks then we rejoined the kids to give them the good news. Our day was going to be great!

In a few minutes we were packed up headed for the abbey. It is a unique tourist spot with lots of tiny shops. One of the shops advertised galettes which are a French crepe often made with buckwheat flour instead of wheat. Sure enough their's was naturally gluten free which, of course, thrilled Matthew. After eating we stepped outside just in time to see people lining the tiny narrow street. It was Palm Sunday and the church goers were in a processional headed up to the abbey for services. They carried palm fronds and we were handed copies of the processional hymns they were singing. What a chance for us to stop and reflect on the Lord's Providence. Had we not gone through all the ordeal we probably would not have been there for the service. It was a great opportunity to stop and thank God, not only for watching over us but for sending His Son to save us.

We learned a few things and the rest of the trip were smarter. Kept the gas tank full and located the hotels before dark. Good thing because when I printed directions to the hotel in Lucerne, I mistakenly printed directions to the center of the city instead... Sprechen sie Deutsch???

Kefir

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.

Another Day in the Life Episode

Actually, it should be a week in the life of Matthew.  Poor guy.  Last week he woke up and the side of his face was all red and swollen.  He was complaining that he didn't feel good and kept rubbing it all day.  We've been through enough illnesses that I know when he's faking it so we went to the Urgent Care center for a check.  His ears and throat looked okay.  The doctor looked in his mouth.  She didn't see anything obvious but thought maybe it was a tooth ache.  That was on a Friday, meaning nothing could be done until Monday morning.  It was a long weekend.

Family and long time followers may remember that after much stress we had found a dentist who would work with Matthew.  Unfortunately, they were a pediatric office and our last visit they talked about how they really weren't set up to handle a "big person".   At 150lbs Matthew was right at the limit of their equipment.  Still, as difficult as it was to find someone who would take both our insurance and Matthew was one of those tasks that I put way down on my priority list.  Until now.

Monday finally rolled around and I was on the phone early.  A friend had suggested one of the dental schools since they had a special needs program.  They said yes, they could see Matthew on an urgent basis but at their Gilbert office.  Could I be there in an hour?  Fifty miles.  Morning traffic.  But we jumped into the car and sped off.  After a pit stop at the gas station (lesson learned--don't let the car run too low on gas) we breathlessly made it.  It's a beautiful clinic and they are set up to see lots of patients.  They tried to do an exam of Matthew but without success.  Even with the most modern of x-ray equipment they weren't able to see his teeth.  So as, in past experiences, they told me the only option was for Matthew to be given anesthesia and then they could take care of everything.  Unfortunately, they did not take insurance and the cost just for the anesthesia was $1500 to start.  They would schedule Matthew for their first availability which would be in three weeks.  Seeing that I was discouraged, the office worker recommended that I might try to find someone who took insurance.

When we got home (yes, driving much slower than the earlier trip) I got back on the phone.  A little searching and I found a dentist on the insurance who worked with special needs kids and adults.  When I called they offered to get Matthew in the next day.  I was excited that it could be this easy.

Even though we were a few minutes early on Tuesday the assistant did not keep us waiting.  I was surprised when Matthew willingly sat in the dental chair.  Until the assistant tried to lay it flat when the dentist came in.  Then it was "NO".  And in no uncertain terms Matthew became Matthew.  No, he wouldn't sit in the chair with it tipped back.  No, he wouldn't cooperate.  No. No. No.  "Sigh."  The dentist folded his arms and turned away from us.  I could get Matthew to sit in the chair but he wouldn't tolerate lying down.  The dentist finally turned to me and said, "You apparently cannot manage your son. I cannot even look at his mouth unless he is supine.  The only thing I can do is take him to the hospital for work under general anesthesia.  You are done."  With that he left the room.

Well, as you can imagine, that was pretty stressful.  We have friends with autistic and other special needs children.  Matthew is one of the most compliant of the group.  But he does have fears.  And like most of us, he has irrational fears.  I know that I am perfectly safe walking to the edge at the Grand Canyon and looking over the rail.  And yet, I can't.  My feet will not work.  I also know that a cockroach will not hurt me but I scream and run like a crazy person when I see one.  For Matthew he fears, not the dentist, but the chair moving and his loss of control.  We talk and talk about it--but don't tip his chair back.

So.  What to do next?  Interestingly, last month when checking out at the grocery store the cashier took a shine to Matthew.  She worked with him to bag our groceries and asked him about his cool shirt, etc.  She explained to me that she too, had a handicapped child.  And for whatever reason told me about her experience at Gomper's Dental Clinic.  She said her daughter's multiple problems caused other dentists to refuse to even look at her.  (Does that sound familiar?)  But she had success at Gomper's.  I pulled that out of the back of my mind as we drove home from dentist #2.  When I got home I called to get some information.  I explained our predicament to the director of the program.  They had a cancellation on Thursday and she wondered if we could make it.  I'll be honest, crying might have helped.  Plus they take insurance and if insurance doesn't cover the procedure or if you didn't have insurance they charge at the lower AHCCCS (Arizona's medicaid) rates.  They did need a whole bunch of paperwork filled out showing proof of disability, medical history, etc.  BUT within minutes of receiving it the office called and asked if they could prescribe some sedation medicine prior to our visit to make things go easier.

This time Bob decided he'd better come along with us so that he could provide moral support.  Thursday morning I gave Matthew his pills (he's had several different "sedation meds" in the past) and "one more time".  At this office an experienced hygienist came out for Matthew.  I explained he was very nervous.  "Let's see what we can do," she showed us where to sit and took him in the room.  It was a straight view in to the room so I could observe everything.  The hygienist had an assistant and they spent several minutes just talking to Matthew (and of course, looking at his TV Guide).  She tried to sit him back but when he balked she immediately told him it was no problem and began to take x-rays.  Mind you, Matthew has never managed to have a successful x-ray of his teeth while awake.  We watched her take the first one (of the sore area) and breathed a sigh of relief.  At least that one was done.  Then she set about to take x-rays of all his teeth.  It was not a new fancy x-ray machine but she was efficient, her helper worked well with her, and they managed to get them all...with no repeats.

Bob and I looked at each other in amazement.  Matthew is 28 which means we have been going to dentists for at least 26 years and each time it's been a struggle.  Could it be that it was as simple as finding the right person? 

After the x-rays were finished the dentist came in for his exam. Matthew continued to cooperate like it was something he had done many times before.  Wow.

So, his sore mouth?  Well, it turns out it wasn't his teeth.  At the clinic they had given him an antibiotic in case it was an abscess and by Friday he was feeling better.  Maybe he had a sinus infection?  Who knows, but in two weeks we will go back and get his teeth cleaned.  We'll see.