Inspiration/Mainstreaming Moms

I've been mulling over the subject of inspirational people ever since reading Jerry's blog entry from a few days ago on the subject.   I guess he felt some heat the day after writing this from his wife's friends who didn't quite agree with him -- I can't do a good job summarizing Jerry's point of view, so just click on those links...

Why did this strike a chord with me?   Don't I want folks--friends, relatives, strangers, etc. to be impressed and inspired by me?  Well---  I guess I would love that (who wouldn't?) but sometimes it is mixed with a kind of sympathy I don't want.  Usually, when someone says something genuine about how I'm a good parent it is ten minutes after I was a completely horrible parent--so I can't fully appreciate it.  

We special needs parents are just like the rest of you--really--we are.  Our kids are difficult/tough/trying/frustrating/exasperating.  But so are all kids.  We sacrifice a lot.  But so do all good parents. Our kids are the loves of our lives.  Just like yours.  Nothing feels as perfect as holding hands with either one of my boys--and mine still let me.  Perhaps I just want to be mainstreamed.  I don't want to be set aside in a special room; I want to be in the room with all the other parents.   There is enough about raising special needs children that is isolating--I always feel different in the store, different at school, different at church, different walking back from the bus stop because I'm the only mom on the street that has to walk my kids to the bus.  All the other kids can just walk down the block by themselves.  In the store my 11 year old acts like a three year old and I can feel the eyes on my back as I talk Joseph through the aisles...  "Yes, honey, I know you want to go that way, but we are going this way now.  Just wait honey, Mommy needs to look at this.  Oh, Joseph, you are doing such a good job being patient."   This the the public "Mother" voice I've created for Target and the grocery store.  If I say these soothing things a bit louder than I normally would, all the folks who hear Joseph making Joseph noises get the message that "This is a special needs kid, and the situation is under control.  Not to worry."  My "Mother" voice is as much for the strangers as it is for Joseph.  Maybe more so.  The examples of this are endless?  Does that make me an inspiration?  No more than the Mom whose child is getting straight A's 'cause she diligently read to him every night for six or eight straight years.  

I think the crux of it is that I would so much rather be a normal mom than an inspirational mom.  I'm not the Mom of "typical" kids.  I'm a special-needs mom.  But I'm still just a mom...  Mainstreaming is good for kids, and I bet it is good for Moms, too.  

First Day of School 2008

In honor of the first day of school I am finally scanning and posting the very sweet notes Joseph brought home from school last spring.  We moved to find a better school situation for Joseph.  It was a big hassle.  We left neighbors we loved and a house we could easily have lived in for the rest of our lives.  This stack of notes, tucked into Joseph's bag on the last day of school says it all.  The move was worth it.  The new school has been much better than I'd ever hoped.  I can hardly read these notes without crying. The children in Joseph's class really appreciated him.  He was a bit of a class project, or you might even say a class pet, and that is okay with me.  These kids learned from him.  He has something to teach us all.  Every parent should also know that there are wonderful schools and wonderful teachers that know how to foster a good learning environment for every child.

  

School Supplies

School starts next Monday.  Alex and I spent the morning organizing his new book bag and school supplies.  He has a rolling book bag for the first time and he is VERY excited.  It is so fun to line up all the new pencils, notebooks, folders, erasers, etc. etc.   Yet I know, realistically, all this stuff will be a big jumble of broken pencils, dried up markers, and lost erasers within a matter of what seems to me like minutes, but is probably weeks.  The positive???   For the first time ever Alex was able to read the list for me and help me figure out what we still need to buy.  We had two composition books and he needs six total.  How many will we need to buy???  Figuring that one out required some prompting, but eventually, he did it.  His brain works so differently than mine.  Numbers are not intuitive.   Another positive is we are trying a new medication.  Also, the medical doctor and the psychologist are going to talk next week.  I think we have finally made it clear to both of them that we need help--and that we have issues that go beyond learning disabilities and ADHD.  

Alex is a Mountain Goat

Our nickname for Alex is "Alex-Bear" or "A-Bear" matching "Joseph-Bear," "Joe-Bear" or "J-Bear."    Turns out we have the wrong species.  

Our biggest hike of the trip was a 3 mile round-trip hike that included a climb of over 

400 feet up to the iconic arch in Arches National Park--the Delicate Arch.  I let 

Dave and the boys scamper on ahead of me 

while I stopped frequently to "take pictures."  At least that was my cover story.  In reality I was stopping to figure out if I could possibly climb another inch without keeling over.   I am NOT in great physical condition--I found myself muttering under my breath about "if Rollie-Pollie-Oldie makes it back to the car it will be a miracle."  But trudge on I did.  See photos. 

We lost the trail near the end, and all ended up where we could see the arch, but we were not right under it.  Other people were right under it--and so we needed to turn around, backtrack a bit, and take the real trail.  Well, I could take a photo of the arch where we were, just not a good photo, so I was done. Joseph was done, 'cause we had already given him my iphone and he was watching Sponge Bob.  Alex said he was done--he wanted to sit and drink water.  So we three sat down to enjoy the view, and wait for Dave to go around and get right under the arch.  We were in a pretty spot, see photo. After 15 min or so we saw Dave by the arch.  See photo where he is waving for the camera.

Now, after Alex saw Dave over right by the big arch he decided HE wanted to be over there.  I explained that he couldn't go by himself, he might get lost.  We would just have to sit and wait for Dave to come back.  That was not the answer Alex wanted.  Another woman had just headed over to the arch the short way, across the red sandstone, and Alex decided he would try it.  Dave cautioned that it was very steep.  Much steeper than it looked from where we were. He had contemplated taking the short route back to us.  Alex was unfazed.  He headed out, determined to get to Daddy.  I figured he is pretty cautious and fearful, and that he wouldn't do anything silly, and he would be right back by my side in just a moment...  Well, I was mistaken.  Check out that little tiny boy with the dark blue shirt on as he strides off to see the arch.  Note how he has disappeared behind the arch in the fourth photo.  

This is the part where I couldn't see Alex, and it was steep.  According to Dave, at this point he COULD see Alex, and Alex was starting to panic.  (I was in a full fledged mother panic--I couldn't believe I had let him go.)  Dave was preparing to head back around the long way so he could get to Alex and help him get back to where I was waiting with Joseph, but before he could start back, there was Alex!  He had scrambled up the steep part, unassisted.  Swallowed his fear, and did not look down.  

Now, I don't recommend hiking off trail in the National Parks.  But thankfully this story had a happy ending.  Dave and I were both proud of Alex.  I think even Alex was proud of Alex, but he wouldn't let on.  That would be, like, not cool.

So, the last photo in this long post is the one of Dave and Alex, together safe and sound! They are the little tiny grey and blue specks under the arch.  By the way, Rollie-Pollie-Oldie made it back to the car safe and sound and Dave thought it was the longest 3-mile walk he ever took.  

Thoughts on travel with an Autistic child

With our Joseph, some things are hard, some are not.  Travel brings new, unpredictable challenges.  

Sleep--The first few days were tricky.  We were in a friends house, not a hotel.  There were a lot of things to touch and play with that could be a problem.  Joseph was actually pretty good, but I was tense about it.  He slept well, but I didn't.  Considering we were two time zones west of home, the fact that he slept 'till after 6 AM each morning was a miracle.   Once we moved into a hotel/condo sleeping was somewhat easier for me.   At that point the only problem was how easily the condo door opened--he discovered that early on, and I had a bit of trouble sleeping for fear that he would get up early and wander out to the lobby and the staff would not know what to make of this odd child!   

Eating out--The photos tell the whole story.  Why can't a menu be a hat?   FYI the shirt is wet from drinking water in the car out of a water bottle.  Thankfully, he does not peel off wet clothes in public the way he does when he is at home...

Hiking--We shamelessly used Sponge Bob videos on my iphone to bribe Joseph to walk or hike.  The deal was "you make it to the end of the trail, or the top of the hill or whatever, you are rewarded with Mom's phone and a video."   We had a few strange looks from fellow travelers, and had I been in their shoes instead of mine, I'd have judged the parenting skills harshly.   At this point, letting him watch Sponge Bob gave me a chance to sit in almost quiet and 

enjoy the view and the almost peace.   At least Alex will pose for a photo! 

Naps--By the end of the trip, Joseph was so tired, he would fall asleep anywhere.  He napped on the ski lift.  He napped on the sail boat.  He slept the entire trip home on the airplane.  On one hand, he missed out on part of the experience.  On the other hand, who cares.

Hiking in Salt Lake City

We went on a short hike our first day in Utah--up a canyon right in the city. Alex and I waded in this stream. It was VERY cold. It was odd to be way too hot, but have your feet be so cold they hurt.   Alex dropped a shoe in the water, and walked the rest of the morning with bare feet.  It makes me a bit crazy to watch, but I pick my battles.

Dave and Ellie, my Salt Lake City friend's 15-year-old daughter, spent the whole walk talking about how to apply to college.  Ellie is a bright, precocious, high-school girl who has big plans.  I can't wait to see what she does with her life--it will be fascinating!!   She has interests in science and math, but loves debate team.  I can see her becoming a lawyer like her mom or a scientist like her dad.  Or maybe a professor!!!!  

First Plane Trip

I'm a bit out of order here.   Both boys enjoyed their first plane ride on our vacation.  I thought they did great.  

Once I downloaded the photos from my phone I realized they both look a bit worried--especially Joseph.

Utah is Beautiful

We had a great vacation in a beautiful place.  A week ago Sunday we left Ohio and took a direct flight to Salt Lake City.   I wanted a direct flight because I was not sure I could deal with Joseph and Alex on an airplane.   There is one direct flight from Columbus to SLC each day, and we were on it.   Both boys did great on the airplane.  No problems at all!  

We stayed with my friend Jeannette in SLC for two nights, and then headed to Arches National Park. 

These photos were from our first evening at Arches.  Note how Joseph is looking at the rocks on the ground--the little ones instead of the big ones.  

We didn't fret about that--we just let him enjoy the trip in his own way.   

Sleep

Well, I just woke up from a 10.5 hour night of sleep.  It is astonishing how differently I see the world when I am rested.  I've been deprived of enough sleep for the past month--year--decade--for a variety of reasons.    As part the "No, Alex is not ODD--Lora you need to take better care of yourself because you are starting to scare your child" prescription given at Alex's last visit to the psychologist, I've tried to figure out ways to protect my sleep a bit more.  That meant that I took a nap yesterday afternoon, and topped it off with sleeping in this Saturday morning.  Wow.  This is what a clear head feels like!  

The boys take their first plane ride tomorrow!  I'll send some photos from vacation, if I get a chance.