Matthew: Photographer!

Lego Island Snapshots

All parents want their child to find a hobby that inspires them; to be an author, pianist, paint or sculptor, etc.  Parents with special needs children are no different.  But when your child is nonverbal and has trouble with fine motor skills it’s not always easy to pinpoint what it is that he can do…or do well.

I say this knowing those around Matthew will quickly point out how much he loves to play on the computer, work puzzles, care for soft furry animals, and loves to read (and share) his TV Guide.  Yes, those are good hobbies and keep him busy but they are “different”.  They point more to Matthew’s obsessions than to any noteworthy achievement.  Today he achieved a new title: Photographer.

Matthew’s European Travels

Over the years Matthew has had great fun taking pictures.  I’ve shared some of them with you.  Gotta love the digital cameras.  Sometimes there would be dozens of shots of the back seat of the car or the cat hiding underneath the table or the puppy’s soft, soft ear…   We noticed long ago that Matthew’s pictures gave us a special insight to how he views things.  But it was still somewhat surprising when we discovered hidden among the expected pictures some real gems.  Grandma even thought Matthew should have a special display wall which we printed as part of our redecorating project.

A few months ago an organization called Mosaic, provider of services for handicapped kids and adults in the valley, sent an email about their special 25th Anniversary celebration.  (You can read more about their locations and services by clicking link: Mosaic.)  They invited community members to participate by providing artwork.  Since Matthew’s pictures are a such unique perspective I wrote them and offered some of Matthew’s some for display.  Not only did they say yes, but wanted to meet Matthew and see more of his work.  Well, what can I say?  We were happy to share.

Master of the Mouse!

To answer your question, no, I did not let Matthew pick all the pictures.  Had he done so they might have all been like the pictures above on the right.  You don’t recognize them?  Of course, they are from the Lego Island computer game that Matthew loves so much.  He takes pictures of the game, lots and lots of them.   He also would have chosen shots of taken as he is playing.  Sometimes he sets the camera on the table and takes pictures of his hand playing the game like on the left. Sometimes he takes pictures of himself looking at the game. And when bored with the computer, how about taking pictures of the well worn videos…  No, mom chose the pictures.

Matthew was allocated a whole table for his display!

We managed to narrow it down and selected a stack to take down to the Mosaic office.  They delightedly took all the photos and invited us to be guests at the celebration.  I knww Matthew was excited as he took a zillion pictures last week just because he was thinking about it…  Sister and some friends also joined us for the celebration with Mosaic (but you know we were there mostly to admire the pictures.)  One friend asked if we considered entering some of his pictures in photography contests.  Maybe we will.

Today Matthew is not autistic, brain injured, multiply handicapped. No, today Matthew is a Photographer.

Matthew’s Display Information

A Person’s Worth…

What value does a person have?  And how do you place a value on him?  Is value based on job, money, influence, ability, intelligence, age?  Is a person only worth something if she meets a certain government criteria?

As your own kids grow your world changes. You don’t always hear about the latest trends in child care, diapers, vaccinations or even schools.  But I didn’t realize how much things had changed until recently.

In 2008 Sarah Palin was turned into a household name. She also brought with her a young son with Down’s Syndrome.  When I first saw him, like many, I just thought how happy he looks.  I really didn’t think much about it. I watched as the Palins were met across the country by families with special needs kids.  Had they come to the valley we might have joined them.  An advocate, a voice for the handicapped, in the White House would surely be good. 

Still, I didn’t think much about it.  Oh, I did hear negative comments from some, but there are crude and rude people everywhere so no real surprise.  Until I realized how few children with Down’s there are today.  Comments by reporters caused me to do my own research.  I was astonished to read that over 90% of fetuses with Down’s Syndrome are aborted in the UK.  WOW!  UK Telegraph (I share the website so you don’t think I’m exaggerating.)  Shockingly, the US statistics are almost as high. It all became clear.  I hadn’t seen a young child with Down’s in some time.  In fact, the youngest ones I know, are now in their early 20’s.

Apparently, we’ve deemed these children expendable, with no value.  Parent’s who discover their child might be less than perfect are given the option simply have a procedure and try again. I was surprised to learn this.  Maybe you aren’t.  It got me to thinking about abortions. Yes, I know they are legal in all states and I’m not here to argue this issue.  I just want to give you pause to think about society today.  If you are like me wondering whether there is a difference between an abortion and infanticide you may appreciate this article: No Jail Time For Mother Who Commits Infanticide.  On the flip side, should parents be forced to watch their child with Tay Sachs disease die a slow progressive death?  I’m not in their shoes so I can’t answer…still for some, four years loving and knowing a child  is worth it though they lose him.

It makes you think, doesn’t it? 

At what point is a special needs child not worth life?  Because she has Down’s does that mean she can’t be loved and loving?  Can another with special needs still have a positive impact on those around?  Are we attempting to engineer perfect children who will grow into perfect adults?  If so, I hate to be the one to tell you, but I’ve seen a whole bunch of “perfect children” who grow into rapscallions (or worse) and end up a sponge on their parents and society.

None of us can see the future.  Even if we could, should we choose to abort a child who has a “non-genetic” injury?  And to what benefit?  I look at Matthew.  He was tested for all kinds of “illnesses”.  No genetic problems.  Yet, to many, he’s not a perfect child.  Today there isn’t a genetic test for autism or cerebral palsy. In addition, babies can have pre-birth or birth injuries.  Babies can be born premature.  Things happen. Sometimes they are terrible.  I know.  We’ve been there.  But does that mean that this child with an injury cannot be a valuable part of society?  What if the injury happens later?  What if it’s years later?

The other day we ran into a young woman who used to spend time at a friend’s after school.  When she was in school she always had the teen pop star magazines which she loved to share with Matthew.  Like many kids, she wasn’t so keen on school work.  Today she is very grown up and was out with friends for dinner.  Her life is good.  She is beautiful and friendly.  A lot of people could take lessons from her.  I can’t imagine that someone might think she was less than worthy of life because she has Down’s Syndrome.

This weekend we took part in a 9/11 anniversary ceremony.  The keynote speaker was not the former vice president (though he spoke), nor was it a very popular sheriff (who also spoke).  No, it was an American hero who rejoined the military following 9/11 because he wanted to be a bomb demolition expert.  He loved his job but when one of the bomb’s exploded as he was working to save his fellow soldiers he paid a big price.  Lost his vision, lost his arm.  Months and months of rehabilitation.  An amazing man, he remained positive and fearless.  I saw pictures of him talking to other wounded warriors.  He showed them courage and gave them home.  He may no longer be perfect…but his life still has a huge value.

Matthew’s Impression of France…

The above pictures were taken by Matthew.  There is no doubt that he sees life differently from many of us. He doesn’t talk but he is known by many.  The other day we were walking up the road in Strawberry with Bob’s family.  A couple women drove past in their Ranger and then shouted out, “Matthew!”  It was a friend of Matthew’s grandma.  And of course, she was excited to look at his worn TV Guide.  When we go to church I always hear someone calling out, “Hey, Matt! Let me see what you have!”  The old ladies love to hug him and they know he loves it.  At the grocery store one of the checker’s knows his name and invites Matthew to pack up the groceries.  Through Matthew we are given a connection to others who we might otherwise never meet.  We can only imagine the impact he has on others.  Oh, he’s not perfect but his life has huge value.

So I don’t really have any answers.  I’m not here to say it’s easy, if your child has special needs…but it’s also not easy if your child has emotional problems, gets in with the wrong crowd, or just lives to challenge you daily.  Still, if you find yourself or someone you know in a difficult position know that many of us do believe all life has worth.  And give me a call…

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.

More Government Dealings

It was the first of August when I last updated you on my dealings with the government agencies. Ramblin Rose August 3 To be truthful I was so mad at the system that I pushed it all aside and decided to wait for a better day.

Luckily, time dims the memory and the first of September I contacted Matthew’s case worker again. Since he had offered that I could provide habilitation* services I decided to take him up on the offer.

Why do I torture myself like this? I know you are asking and there is only one reason. If I die tomorrow someone will need to be here and care for Matthew. Bob can’t drop everything and stop working. I know without hesitation that my parents would step in and do what is needed and yet, it would not be without a major change in lifestyle for all. So I continue to pursue getting these services for Matthew hoping that I can save someone else the grief.

So, following my phone call, the case worker comes for a visit to put the services into action. I am smart this time and set up the appointment when Bob can attend. It’s a good thing because he reins me in from complaining too much. The young case worker is pleasant enough. He apologizes that they denied coverage for the attendant care and I explain again that I’d like to get going with the habilitation services. “Let me make some phone calls and we’ll get this started,” he says with a grand gesture. (Bob tells me later that this guy reminds him of a used car salesman.)

Within two days I do receive a phone call from a gal who says, “There seems to be some question…yes, of course, you are ready for habilitation. Everything is in order.”

Well, I am pretty humbled and acknowledged that the case manager did his job. Until I send in a time sheet. Of course, another agency takes care of this part and sure enough I get a phone call. “We don’t have any authorization for these hours and we need a pay rate before we can process the time sheet.” I should have known.

A few phone calls and several days later I discover that there is one more agent who needs to make an assessment. After questioning the need for this “again” she looks at our file to find it’s been over a year since starting. This person is very gracious and apologetic. She manages to calm my frustration and we spend more than an hour going over Matthew’s needs once again. She finishes up and assures me that as soon as the central office receives this information they will be able to pay me to provide Habilitation for Matthew…oh wait, I am not certified for Habilitation; I am only certified for Attendant Care. I’ll need to take a class for the Habilitation… it’s deja vu all over again.

*FYI: People with special needs can qualify for services that are covered by each state. Services, number of hours allocated, and rate of pay depend on needs of the individual. Habilitation is working with the person to “learn” a particular skill. For example: Me brushing Matthew’s teeth would qualify under Attendant Care. Teaching Matthew how to brush and offering assistance and guidance would be Habilitation. Fixing lunch is also Attendant Care while hand over hand use to spread peanut butter on a slice of bread is Habilitation. Also included in Matthew’s services is Respite which is providing someone to make sure the individual is safe while allowing the caregiver a break.