Too Much of a Good Thing

When our Callie arrived 9 1/2 yrs. ago she had severe attachment issues.  One was that she hold up her hands to be picked up and within about 30 seconds was pushing away.  It was up then down up then down over and over again.  It was exhausting, but slowly and surely she spent more time being held and received touching in a soothing way rather than an uncomfortable feeling she resisted.

She never became much of a snuggler and the times she would actually sit in my lap or close by me were pretty rare.  This is why one of the behaviors we're currently dealing with is a bittersweet problem.  She is working on personal space.  She doesn't have great boundaries and her closeness and sometimes inappropriate touch makes many people uncomfortable.  Lack of boundaries is another consequence of attachment issues as are a lack of social skills.

Tolerating touch was something we worked long and hard on with Callie and now we find ourselves trying to teach her the difference between who she can touch, how she can touch and when she can touch.  Trying to explain to other typical kids in middle school, let alone adults,  she doesn't mean anything when she taps them on the chest besides - hey pay attention to me - is difficult.

As so often happens with Callie, it's a good "problem" to have.   It's a lot like when speech pathologists  exaggerate a sound knowing that once the person has it, they can back down on the exaggeration. Similarly we will continuing teaching Callie when and how to touch others.  It's a bit of the "too much of a good thing" problem, but considering the alternative that she might have never allowed touch and always been defensive towards any physical affection - I choose to deal with this.

When I'm Good and Ready

Callie seems to have overcome yet another obsession.  She had a rollercoaster book she's carried around for probably a good 6+ months.  We found a replacement online, but every time I thought I'd ordered it, I really hadn't.  I think it was God's way of pushing all of us to let it go.

Today, Callie came home and went straight to the trash compactor and put the ragged few last pages into the compactor.  She was good and ready.  I may hold my breathe when bedtime comes tonight and she doesn't have her beloved book to prop up as she has every night for the past umpteen nights, but I am pretty confident that she is ready.  She hasn't gone back to look for it yet.  I may get her a new Barbie doll just to distract her at bedtime, the Barbies sleep with her too.  That seems a small price to pay for that bacteria laden book to be permanently retired.

Callie has been decisive about the end of several obsessions or behaviors.  We often found ourselves saying, "Huh - have you noticed how Callie doesn't ______ anymore?"  Squirt lotion all over, flood the bathroom, write on walls, freak out when the blender is turned on, eat so much she vomits - and a host of other past behaviors.

It's the hope that "this too will past" that keeps us going some days.  Most of her behaviors seem to come and go, which is comforting when we're facing one that is particularly disturbing.  Right now, she is obsessed with kissing.  First she wanted other people to kiss and would put couples together and demand they kiss.  Now, she wants to kiss - anyone who happens to be around when she has the urge.  She is an indiscriminate kisser - any age, any gender, anytime.  Most people find it amusing, but when she corners someone or goes in for a kiss from a younger more vulnerable child, that's not so cool.

Someday, God willing, we'll one day look back and say, "Huh, remember when she used to try to kiss everybody in sight?"

Take a Pause

A few weeks ago Jacob's school began it's third quarter.  The teachers asked the kids to write two goals for the rest of third grade.  The examples given had to do with passing reading levels etc.

This is what Jacob wrote - exactly.

1.  Do not Get Posis in a week.
2.  Do not tock ot uf trn.

Just a reminder - Jacob has learning disabilities.  He has worked long and hard to get close to grade level in reading.  Writing is painfully difficult for him.  

The first goal states that he doesn't want to get any pauses in a week.  This is the classroom's version of time outs.  When they aren't paying attention or are disruptive, they take a pause.

The second goal says that he doesn't want to talk out of turn.  That's pretty self-explanatory.  The teacher's comment was, "Both achievable goals".  

I have really mixed feelings about these goals.  On the one hand I'm glad that Jacob wants to get along in school and doesn't like when his behavior doesn't reflect the kind, gentle young man he strives to be.  On the other, it bothers me that behavior and not academic achievement is not the first thing that comes to his mind.

Jacob gets very frustrated with himself when he isn't able to reach these goals, but from what we've seen, it's not because he doesn't want to.  Sometimes he just can't.  This doesn't mean he can't or won't at a later date, but sometimes - it's just not possible in that moment.

Personally, I know I would be a much better person if I took a pause before spouting off my mouth or judging someone else harshly.  We surely have high expectations for children - sometimes much higher than what we as adults expect from ourselves.

Everybody just take a pause today.  The world would be a much nicer, kinder, gentler place if we just followed that piece of advice.

Movie Set House

A few years ago while Mark was working on a new bathroom Jonathan commented that our house was like a movie set.  We just keep moving walls around to make new rooms to suit the needs of our family for that particular time and we are at it again.

 When we first moved in, 21 years ago,  we had 7 kids and this house had 3 official and two unofficial bedrooms.  So, we divided the basement into two bedrooms and we were set - for awhile.  Later on we sectioned off the end of our family room and made it into a bedroom for the Jacob and Christian.  Our master bedroom was split into a bathroom for Shannie and a bedroom for Ella.  We also had a half bath which we took out and made into an alcove with  desk and computer.  Right now we have 6 official bedrooms, only the boys are sharing for now and we're ready to have our basement back as a rec room or whatever they're calling that type of space now.  

The picture on the left shows the wall that's being removed.  The picture below is painted on the wall that was Jonathan's room with "Pokinatcha Punx" - which we let Jonathan paint cause we're just that awesome as parents - from the band MXPX which he loved at the time.  It was forever called the Pokinatcha kid room.  It ended up being a graveyard for no longer useful items.  Now, it's being cleaned out and we'll see exactly how it turns out.

In honor of the first day of African American History month I quote Mary McLeod Bethune,  "I never stop to plan. I take things step by step."  This works best when remodel projects happen around here.  We never know exactly what the end project will look like - it's the beauty and the curse of this old house.  

An Apple A Day

I consider myself reasonably adventurous when it comes to food.  My boys and husband who only like food so hot they sweat profusely would undoubtedly disagree, but I am.  Yesterday while shopping I saw a new variety of apples, and I love a good new variety of apple,  that I will never try.

I was choosing apples somewhat based on price and somewhat on varieties we enjoy.  I bagged up some Jazz apples - very crisp and sweet - when I saw a 4 pack of apples in a plastic container.  The package was labeled "Grapples". No, not a hybrid grape/apple, but an apple infused with artificial grape flavoring.

Just what was it about naturally sweet and wonderfully flavored apples that made some genius decided it needed help to taste, better?  Are there really kids who won't eat a regular normal apple unless extra flavoring is added?

To say we have a little problem with our food America is a ridiculous understatement.  Can't we all agree to just leave our produce alone.  I know we can discuss the organic vs. inorganically grown and that there are definitely some food additives that should be off limits.  But honestly, can't we all agree that our fruits and vegetables do not need to be injected with flavoring to, well, add flavor.  Either you like the flavor as is or you don't.  Remember the expression, "An apple a day keeps the doctor away".  I'll take my apple without injections thank you very much.

Why the Rush?

I rarely, as in 3 or 4 times a year maybe, go to the Mall of America.  This week - twice.  Once to walk with a friend, which was great as the below temps made walking outside impossible.  Today after discussing several options I agreed to take Ella and Jacob to the mall and purchase a small lego toy if they walked around it with me twice which is equal to a mile.  So off we went.

As soon as we entered the doors we could see that there was obviously a cheerleading competition of some sort going on.  Girls in too short skirts with thick make up, including very young girls, maybe 5 or 6 yrs. old, big bows in their hair.  It's an odd juxtaposition to see the girlish ponytails with little girl bows, but adult faces with their make up.

There were several disturbing scenarios I observed.  One was a family who had matching T-shirts reading Jacey's Mom, Jacey's Dad, Jacey's Bro and lastly Jacey's Man.  JACEY'S MAN!!  These kids were maybe 16 yrs. old.  What were her parents thinking?  Don't even get me started on referring to this  kid as a man.  Sheesh.

I've never understood why some people seem to be in such a rush to have their children grow up.  Childhood is an incredibly short time.  We should cherish it and stretch it just as far as we possibly can enjoying every last second of it, not hurry our children into an early adulthood.

It made me oh so grateful for my level headed daughter.  When we arrived today we parked and had to walk through the store Forever 21, a store that would be very attractive to most girls her age.  We couldn't walk through the store fast enough for her, except maybe when she's passing the American Girl store.  Nothing there turned her eye.

I had to beg her to try on hoodies in a different store, but she tried on the first one I handed to her and she said, "that's fine".  There are times I wish she would take an interest in girly type things or the clothes she wears, but I'll take her lack of fashion interest over a girly girl any day and I will squeeze every last second out of her much too quickly waning childhood.  Adulthood can wait.

Laughing Because I Love

This is Frankie McDonald.  He has his own youtube channel.  He really loves to talk about weather, but also likes dancing and holidays.  He also, pretty clearly, has a developmental disability, perhaps autism.  When I watched the first time I wasn't sure if it was okay to laugh.  My conclusion is that it's okay if this is a population of people you really love, and I do.  Frankie is passionate about whatever he's talking about.  His parents are clearly aware that he's creating all these videos and likely are encouraging him.  All of us who have children with obsessions knows there are some battles you chose to fight and some that are not worth fighting.  I have no doubt that this obsession keeps Frankie very busy and in a much more fruitful way than many other obsessions.  He also keeps track of how many hits he has, so he really wants people to watch.

Some of the other videos I saw, including several radio stations,  featuring Frankie were clearly making fun of Frankie and were not laughing because they love.  That is my one reservation of sharing this video at all.  I don't want people to misunderstand that it's okay to laugh at Frankie.  Enjoying how he sees the world is different than laughing at him.  In this video Frankie clearly cares deeply that we Minnesotans need to be careful with our extremely cold temperatures so BE PREPARED!

How can you not love the extra body noises and the fantastic Canadian accent, this coming from a Minnasootah girl.  Frankie - thanks for the warning and I'll be watching you.

Pick Pick Pick

One of Callie's quirks is she hates imperfections in clothing.  If there's a thread she'll pull it till like a cartoon her sweater completely unravels into a pile of thread on the floor.  If there's a hole she'll pick and pick at it.  Sometimes, as today, she makes the hole, generally with a pencil, and then picks or pulls at it till the item of clothing is unwearable.   What leads her to wreck something perfectly good I don't know.  I just know with her, once it's begun there's no stopping it.

As with so many of Callie's quirks they often relate to life lessons for me. We are repurposing the recently deserted bedroom of our Christopher into an office/sewing or craft area.  For, well ever, I've had to pull  out my machine and then put it away, often on a daily basis due to some fingers that just can't stay away.  Now I can set it all up and leave it be - close the door on it, even lock it and trust that it'll still be there when I return.  We can also deal with the mounds of paperwork that this family requires behind closed doors, maybe putting all of it into some semblance of order and maybe even getting a little writing time of my own done without interruption - well, that fantasy may be taking it a bit too far.  

This weekend Mark and I shopped for a good office chair and, thinking that some bright bold color would be a nice change from the standard black we purchased a royal blue chair.  As we started putting the room together I suddenly realized the walls are a sea foam green.  Royal blue most definitely does not go with a  royal blue.  The red chair we looked at may have gone better, but also could have been exchanged with the upstairs black office chair and would have matched, but not the royal blue.  Suddenly the whole room was ruined in my mind because nothing would even slightly match and what in heavens name would I do for an area carpet that would go with those two completely opposing colors.  

As I was complaining and chastising my tirelessly patient husband about it I realized it's much like Callie's picking.  I took something that is just fine - new to me, functional, bright, clean and picked and picked until, in my mind at least, it was ruined.  How incredibly unappreciative could I possibly be?   I am going to have my very own space and every time I look at and sit in that very comfortable chair I will remind myself how very blessed and privileged my life is and the fact that I could get all worked up about the color of a brand new chair is just another reminder to be ever so grateful for the amazing life I live with an unbelievably patient man.

Get to the Point

A couple days ago Chad's social worker came over for us to complete his plan for this next year.  As we finished we also discussed our adult daughter and how things are going for her.  She has a team of providers and e-mails are sent to all on a fairly regular basis when there is a problem that needs our attention.  She said with a sly grin that she loved how blunt I was and said she sits there reading it saying, "Go Paula Go."  I took it as a compliment and that it makes her job easier when we, as guardians,  just state the facts and what our thoughts/decisions are.  It's the power of guardianship.  We get to make the decisions and generally others have to carry them out.  We have that power for three adult children, including Robby who was our foster son for 14 years.

I was contemplating on whether my bluntness is a good or bad thing and why it is that I've become more curt, particularly as the years go by.  I decided it's partly because I am experienced and feel pretty secure in my decision making when it's necessary and involves my kids.  I also decided it's due to the number of people we make decisions for  and the number of people they have involved in their lives that have to receive and carry out those decisions.  They have many professionals and others involved in every aspect of their lives.  There are seven completely dependent people in our lives and one who is on her way to making some of her own decisions, which is a whole other type of training.  I figure there are close to 50 some professional types who ask us to make decisions regarding their care, work, living arrangements, money, future funeral arrangements - made those decisions for Robby last year, medical care decisions etc.  Being blunt is simply a time saver.  Making small talk takes time.

For awhile Callie had a physical therapist who was freaked out by her impulsivity and was determined that she should wear a helmet.  The kid was like a bat - she never bumped into anything.  She might step on kids that were sitting on the floor in her way - they might have needed helmets - but she was fine.  She worried about table corners etc.  My philosophy was if they had sharp corners in a special ed. room I'm not thinking that's my problem - put protectors on the table corners then.  My other thought was, the kid already stands out in a crowd and we're trying to help her meld,  just how weird do you want to make her look?

When Chad was in his early teens we had someone on his team suggest he needed more age appropriate toys to play with - he liked and still likes - his super heroes.  My reaction was,  "Really?  I know a guy with an entire basement devoted to his toy train hobby.  He's a pilot.  I'm thinking Chad is just fine with his super heroes."  The general rule is they stay at home or in the car,  just like the pilot, know the time and the place to let your inner child out.

There are people in my life that I am gentler with.  I know they need that care and attention and I'm happy to give it.  When it comes to those who are in that "professional" realm, I tend to be the bluntest. Personally I appreciate knowing where people are coming from and I'm really good with straight forward.  It makes it easier for me to be decisive, which I'm thinking helps everyone.  I don't want to hurt people's feelings, but that being said, my emotional energy is pretty spent with the people I'm responsible for here at home and those in our immediate family.  So for anyone who's been on the receiving end of my bluntness I won't apologize, because it's how I cope and my "work" style, shall we say.  Just know it's really nothing personal.   I may just be in a hurry and trying to save both of us some time.

This is Life Deal With It

Who doesn't like getting new stuff.  Me too - usually.  The new piece of equipment that arrived yesterday - a suctioning machine - not so thrilled.  We put it off for as long as possible and will use it, for Shannie, only - only when ab-so-lute-ly necessary.  That being said, it'll be a good piece of equipment and really help her out and that's all the detail I'm gonna say because - gross.

Years ago one of the girls we provided foster care for had a tracheotomy.  Of all the medical issues we deal with ones involving the "M" word - mucus - are the most difficult for me.  I have a strong gag reflex sometimes just thinking about it.  Handling that trach was quite the challenge for me.  Christian's trach, thankfully, was removed long before he arrived here.  Shannie just needs a little help when she has a serious coughing spell - that's manageable.

I was determined from a very young age to be a nurse, or maybe even a doctor until.  One day when I was a Candy Striper in my cute pink and white striped jumper - those were the days - I had to hold the plastic dish for a guy coughing and spitting.  I just about lost it there and then.  I walked out of that room and thought - nope - not for me.  I laugh about it now thinking about all the medically gross stuff we've dealt with since I was fourteen - if I'd had any idea I might have pushed through and gotten a medical degree from a reputable institution, but no, just the college of - This is Life Deal With It  - for me.

Once we had Shannie in a local hospital for pneumonia and she needed to be fed.  Mark gets the G-tube out and the nurse's eyes bugged out.  From her reaction it appeared she'd never actually used a G-tube.  This didn't really provide the confidence in that particular hospital's ability to handle our girl and we were ever so grateful when they transferred her to the hospital where we were generally admitted.   I think they were happy to see us go as well.  This is just about as much nursing as I want to handle.  With every new piece of equipment or medical issue I learn and adjust - sometimes not very cooperatively, but what must be done must be done.

One last thing - for some reason they didn't send the tip attachment that would actually go into her mouth, so online we went looking for one.  A package of 5 - $1.06 each - great deal.  Put it in my basket - the total was $139. 04!  Whaaaaaaat?  Yup that was shipping and handling - are you kidding me?  We tried to circumvent the whole rigamarole of a doctor's order etc. etc. and just paid for the machine ourselves - $147 total, by the way.  Now Mark will have to spend a morning on the phone getting a doctor's order for our medical supply company so we can get the little attachment.  Is it any wonder people dealing with medical issues are overwhelmed, not to mention broke?  But, as I said, this is life - so deal with it we will.

Special Education - This Parent's Viewpoint

It is with trepidation that I write this blog, but it's been on my mind for quite awhile and hopefully it will be taken in the spirit that it is meant, which is to share my experience, not to criticize.  I've had children in special education for a total of 22 years now. I am surely not speaking for all parents of special ed. kids, that would be impossible,  just some ideas, suggestions or thoughts from my perspective.

1.  Very few parents of SPED kids - short for SPecial EDucation - were expecting to be parents of SPED kids.  When you're not expecting to learn about something it sometimes takes longer to learn it.  Perhaps sometimes because you're hoping you don't really need to know this stuff, this is all just a mistake.  That means we may need information to be repeated.  There is so much for us to take in and school is only one place from which we are getting information thrown at us.  Many of us have multiple health care providers to keep track of or social workers or psychologists helping us figure out what we're dealing with.  We are on information overload - all - the - time.  Receiving all this info. via various venues may be helpful - e-mails, phone calls, written forms or notes.  Different people like to receive their info. in different ways.  The first of many areas where flexibility is an essential skill for SPED professionals.  Most parents are assimilating all these details while also dealing with jobs, other family members, possibly financial difficulties and lots of emotions. None of these things helps process all that is being thrown your way.  By the way - watch the acronyms.  Not everyone is savvy to the IEP, SPED, SPOT etc. terms - which has changed more times than I can count - and, it may just be me, but I hate feeling like the one left out of the secret society or feeling stupid.  For me, that's the worst.

2.  IEP - the Individual Education Plan - often an experience that is overwhelming for parents.  First and foremost every person around that table should introduce themselves and yes explain what the heck you do - specifically.  Doesn't matter if you've met the parent before or talked to them on the phone.  When you're sitting at a table with maybe 8 or so professionals your mind may blank out and it's awkward if you can't remember someone you should clearly know.  Also - who are these school rep people and what is their job?  I'm still not sure I know the answer to that.  I only figured out two years ago the hierarchy of SPED teachers - it was the first time I knew what a "lead" teacher, sort of the middle management teacher who supervises the SPED teachers at a certain level - was - after 20 years!  That's ridiculous and I'm a reasonably intelligent person who is generally not overwhelmed by my own life issues, I can't imagine how a single parent or one challenged in their own ways handles it.  Statistics vary, but some state up to 90% of parents with special needs children face divorce.  Compassion seems like a quality most SPED professionals would all have and realizing the stress marriages may be under when you are dealing with your students' parents is just one area where that compassion would be essential.

3.  I am a realist.  This may not be true of all parents, but I am very realistic of what my kid's adult life is likely to look like.  This is partly because I have parented 3 adults, all in the DCD category - Developmentally Cognitively Delayed - so I know what it looks like when they leave school and the options that are available.  School is completely different from real life.  In real life every 30 min. or 45 min. or whatever the time period is will not/is not scheduled and controlled.  That's not how the world works.  The majority of people who interact with my kids are not trained professionals who are used to their quirks and can decipher their speech.  When I look at my kids I am looking for how they interact with others and how they adapt and what personal care skills they have or don't have.  Frankly, if a kid doesn't learn to mind other people's personal space, i.e. stay out of their bubble, writing their name or adding numbers isn't likely to help them get a job.  Social skills are everything in the real world.  Academic skills mean nothing if a kid can't speak clearly enough for a complete stranger to understand them or doesn't follow directions.  Every academic skill, especially by the time they reach middle school, should be a vehicle to teach social and job skills.  Again, I'm a realist, only one of my SPED kids will be their own guardians so having a signature will never be needed, but waiting quietly while someone else fills out the form - very important.  Learning how to act around "typicals" is very essential to their adult life and often lacking in our how our special ed. is set up today - see #8.

4.  Independent - not relying on another or others for aid or support.  Apparently this is a word which is defined differently in a school setting than I would at home, or frankly than the entire rest of the world would define it.  An example of an independent skill is to give an instruction, say, wipe the table, and the kid would get a cloth, rinse it out, wipe the table down thoroughly, rinse the cloth and then put it away or hang it up.  That's independent.  I've been told my child does certain things independently at school which, in reality, seems to mean someone pointing, instructing and redirecting  while the child proceeds with the "independent" skill or else they have amazing talents they express no where else.  Either way, these "independent" skills are useless if they don't transfer out of the school setting.  If there's really that large of a disconnect between their school abilities and their out of school abilities we may have a problem.  If they way we define the word independent is the issue, then let's define it together so we're all on the same page.

5.  Perhaps a continuation of #4, but I prefer my kids are praised for "real" accomplishments, not concocted ones.  There was a video recently that showed a "wrestler" who had severe CP.  His coach carried him to his opponent and they "wrestled".  Of course the kid with CP "won" and everyone cheered.  It was completely patronizing and demeaning, in my opinion.  There have been times my kids have brought home art work from school I'm pretty certain they had nothing to do with.  I'm fine with that, but don't want them having "their" art in a show if it's something they had very little input on.  They are capable of having real achievements on their own.  Just as I'm not a fan of "participation" ribbons in kid's sports, I'm not a fan of fake achievements for my SPED kids.  Not everyone is a "winner" and that's just fine.  It makes their real achievements even sweeter because I know they worked hard for them.

6. School is often a big black hole.  My kids are not able to come home and tell me how their day was.  Some because they are non-verbal, but others are not able to have a conversation which is in any way informational.  Sure, other people will say their kids never tell them how their day went either.  I have typical kids too, so I know about that, but I get pretty much zero info. unless a teacher takes the time to tell me.  I can't even know the names of my kid's friends if they can't tell me, usually can't, and teachers can't due to confidentiality I suppose.  It's a really odd position to be in.  I will tell you the stories I want to hear more than anything else are not generally about their academic work, it's about the regular ed. kids who had lunch with them.  I got pictures from the DAPE - adaptive physical education - teacher of my kids climbing the rock wall.  That was awesome!  Parents are often told they are part of the team, but the part who has absolutely no idea what the other players are doing most days.  I know the end goals, but often feel left out of the game.  Any stories that let me know how my kid was at school, what kind of day they had, do they have friends -  anything is great to fill in that black hole.  I don't need a daily phone call, but an occasional e-mail with a personal story - love those.

7.  It is a shame that paraprofessionals are not considered part of the IEP team.  It's a terrific shame when a teacher doesn't realize how very important those paras are in how well our students succeed in school.  Most of the SPED teachers I know are very aware of what an important part of the team the paras are.  The few I've known that didn't know that, well, the classroom environment suffers because of it.  They are the ones who observe those reg. ed. interactions that I'm so curious to know about.  They are generally the people who are responsible for teaching my child proper interactions with typical peers - an essential skill in my opinion.  They are the ones that care for my child's personal cares - a very important and personal part of my child's day.  A great para is priceless and often under appreciated.

8.  It was thirty years ago when our son Chad moved in with us.  Obviously special ed. has changed quite a bit from those days.  One of the things that has changed and yet not changed is integration.  In elementary school, the early years there is a reasonable amount of integration.  As the years go by it lessens and in some cases becomes nearly non-existent.  When Chad was in high school in the early 90's he played the bass drum in the regular school band.  It was not by any means a big fight for that to happen.  We just said he loved music could he do something in band and the spec. ed. teacher made it happen.  It was wonderful.  From what I've seen I'm thinking that would be quite the achievement these days.  We seem to be much happier with keeping special ed. students in their own space and away from reg. ed. students.  During lunch, to my knowledge,  my kids are at a table with a para and at least one other SPED student.  This is counted as integration time.  Knowing what my kids look like when they're eating, it's not what I would consider really prime time for making relationships with reg. ed kids.  Sometimes they gross me out when they're eating and I'm quite used to it.  It's not exactly the time their best foot is forward.  I assume some, if not all,  of it is cost effectiveness, which teachers have no control over.  When Chad went to band a para went with him.  Now, any integration that happens is never one on one, therefore sort of negating the whole concept of having our kids form relationships with typical peers. It's difficult enough when they need an adult close by, but if they have a SPED peer there too, what typical kid is going to approach them then.  I'm sure some do, but it would be the extreme exception.

9.  Holistic - this may sum up my ideal view of special education, but, unless a holistic approach is taken our kids will not be prepared for adult life which is, after all,  the goal.  All of my special ed. kids are adopted and many came from difficult situations, so that's where I'm starting from.  However, I believe this is true of all SPED kids.  Physical, emotional, intellectual and social development does not happen individually.  It happens when the child is taken as a whole.  If my medically fragile child is recovering from pneumonia it may not be the best time to start a new communication program.  If my child has a meltdown at school it may not be the best time to move desks.  If you want to work on social skills get them out of the classroom and into a regular ed. room and work on those skills.  Don't sit in a private room and make up a pretend conversation - that's not the real world and they may not be able to transfer those skills from a made up situation to a real world situation.

If we want them to learn bathroom skills then boys need a male para to go with them.  If you can't provide that, then they are not going to learn those skills at school - period.  Every skill they learn should be multi-layered.  Learning the value of money should be taught more because they need to learn to follow directions and speak clearly and learn personal space.  The likelihood that they will ever pay for something on their own with cash, in my experience,  is next to nothing.  How many of us do that anymore?  Someone else will handle their funds and no cash will exchange hands.  This is even more true as time goes on.  Therefore if those skills are being taught it is because of the side skills they can learn with them - social skills, personal space, speak slowly and clearly, stand still, make eye contact, listen, be respectful,  follow directions etc.  I can tell you from my experience if those skills are not in tact no one cares if your kid can read, write, tell time, or count money.  They don't want them around and there's no chance a company is going to hire someone without some decent social skills.  Some of the quirks people find charming in kids, not so much in adults.  Our kids need even more time to learn adult behavior - like from the very beginning.  Everything takes them longer to learn, there is no time to waste.

10.  One last point.  Most teachers know that parents often get the brunt of our kid's attitudes when they've worked so hard at keeping it together all day long.  They're exhausted by the emotional energy of it all and can't wait to get home and let loose.  Please remember that you often see the absolute best my kid has to offer and we get the leftovers to deal with at home.  Often between dealing with behavior issues and working on personal care skills, table manners, social skills, going to special olympics, sports, church activities or music lessons and the emotional baggage they are carrying - we are exhausted.  I'm sure that there are some parents who welcome homework for their kids.  For us, it is often too stressful.  I also put homework under the category of "independent".  My older elementary typical kid does not need my help or gets help from friends.  My SPED kids will never be able to do their homework independently. This often feels like I have homework to do and I'm often less than thrilled to have homework, especially when it inevitably will cause a massive meltdown.  This is another area where it helps if you can put yourself into our shoes.  Imagine the day you just had at work and then picture yourself going home to spend the evening with a cranky, if not completely belligerent kid who just wants to play and your job is to call them inside or away from their game and sit down - again - to do paperwork.  How many of our kids are already struggling to sit still at school?  I have a kid who generally has to stand at the dinner table because he just can't sit anymore after sitting - all - day - long.  That is just asking too much.  Flexibility is essential in parenting, as it is in teaching our kids and that should include the flexibility to just say no to homework when their mental health, as well as our own, is at stake.  We need to have some time to positively connect with our kids before we kiss them goodnight.  If that means no homework - then so be it.

My hope with this blog is not to offend or even call SPED professionals to task.  I have the utmost respect for most of the professionals my children have encountered and I hope they know that.  It is my attempt to express my parental opinion - mine, not every parent's opinion.  Most of my kid's professionals have been just that - truly professional.  Not perfect, heaven forbid that would require me to be a perfect parent and that's way too much pressure.  I'm thrilled when I know my kids have a teacher who is optimistic, energetic, creative, and flexible.  What more could I ask for.  There's nothing better than sending your child on their school bus every day knowing they will have the best day possible because from the time they're greeted on the bus until the time they get back on that bus they will be with people who are loving on them all day - no matter what kind of day they have.  For all of you, I will be eternally grateful.

Juxstaposition

Today we had a winter storm.  Lots of beautiful, heavy snow.  Callie, Ella and I went to a dance practice for next week's church service.  Callie, as expected, learned the moves much more quickly than I did - including the boy's moves I think.  She exudes such confidence when she is dancing or singing.  She has non of the fears of messing up we other humans all tend to have.  It's always beautiful to watch.

When we left the building the snow had continued to accumulate and the parking lot had not been plowed.  As I pulled out the tires spun a little and we were stuck - not horribly, but it caused Callie great concern.  Even as I was able to pull us out of it she was bailing.  She opened the door and Ella tried to grab her from the front seat back into the car.  I was torn between what every Minnesotan knows - once you're moving don't stop.  You can barely be moving, but you never stop.  Obviously, I had to stop.  I also had a friend who's van was stuck about 30 ft. in front of us.

Callie got out of the car and refused to get back in.  I tried everything to convince her to get back in her seat.  A group had gathered to push my friend's vehicle in front of us.  Callie started pushing me, got into my seat and kicked at me to get me away from the car.  Ella, wisely, turned off the car and grabbed the keys.  We've been in this situation before, but never in the middle of a snowstorm.  Finally she started walking towards the friend's car.  She added her push to the back of the vehicle and we helped, as best we could.  Finally their car went on it's way.  I didn't know what Callie would do, but thankfully, she got in and I had somehow managed to engage the child locks on both back doors.  Hopefully, no matter what happened, we could keep her in the vehicle and make it home.

God was very gracious to us and we made it home with little spinning of the tires, which also sets off a beeper in our car - I know what spinning tires and swerving cars are - Minnesotan here.  They are also very un-Callie friendly.

The juxtaposition of Callie's confidence in singing and dancing against the inability to conquer her anxiety of the car spinning out was so typical of Callie's life.  She can be so very confident and unshaken in some things and just can not deal with other unexpected and un-welcomed surprises in life.

Just like driving a car in a snowstorm, we will continue the slow constant driving - pushing along and not stopping.   Sometimes confidently and sometimes with great insecurity in our ability to stay on the road we will just continue moving forward.  Turning around isn't an option.

National Adoption Month 2012 - Final Thoughts

As this year's month honoring and recognizing the importance of adoption closes I wanted to share some thoughts.  Adoption has been a part of my life, most of my life.  I have to remind myself sometimes that it is still a "foreign" idea to some people and one that they struggle to understand.

As a young child my parents had close friends who's two daughters were adopted.  My mother would often comment on how great it was that the adoption agency matched them to children who matched their physical traits - eye color, hair color, of course skin color.  This way no one would know they were adopted.  Clearly, the message was, adoption is a secret and somehow a shameful thing.  It seems so old-fashioned to me now, but when you see how many people spend thousands to achieve a biological child, even to the point of having a surrogate carry their biology, it's not so old school.  

I understand the desire to experience pregnancy and birth and as someone who was easily able to achieve that I don't want to be insensitive.  For me, the end goal would have been to be a parent, not of a child who looked like or had personality traits similar to my own,  just to be able to be a parent and have children that were mine.  May I add, having biological children is no guarantee that your offspring will be like or even look like you.  We all know people with bio kids who we've thought - wow how did that happen?

Just last week I helped out in Jacob's classroom and heard quite a few kids ask Jacob incredulously, "Is that your mother?"   He'd reply yes and then the obvious follow-up, "I didn't know you were adopted." Oh how Jacob loves those conversations.  In a few years it'll move on to the, "Don't you want to know who your real parents are?" or "Don't you miss your real parents?",  Comments my older adopted kids have heard.

My point is - for those who are sick and tired of hearing about adoption, I'm sorry, but until the day kids meet our family and rather than questioning our relationship they will simply say, "Cool."  It may take another generation of teaching and so I will continue, like I have a choice.

My request, plea really, is that you take the time to talk to those you know or parent and discuss family and the variety of ways God makes families and that it has nothing, absolutely nothing, to do with how you look or even what you like to do.  

It is fiercely, and I mean fiercely,  pursuing connections with each other and claiming over and over again - we are family.  We are a chosen family - God made us a family and chose our family by picking each and every one of you specifically for this family.  He chose us as your parents and each of your siblings to be your brothers and sisters.  You may question why, as every child in every family does, but we were meant to be together - so deal with it.  No one's going anywhere and you can count on that.

Another One Flies the Nest

It's always a bittersweet day when my kids move out.  I'm happy for them, but know it'll never quite be the same again.  With this particular kid it is a definite shift in the dynamics of the family.  Although Ella is the third eldest of the next group of siblings, she is the eldest in the ability to lead as an older sibling.  She will be, and already is in many ways, the heir apparent to the throne of sibling hierarchy.

Christopher is our bridge - 6 years younger than Melissa and 6 years older than Shannon.  He is truly the middle child - five are above him and five are below him.  He is the only sibling who doesn't have a close in age brother or sister.  He is the "Boss", as Ella nicknamed him.  He was the first and still so far the only sports enthusiast of the siblings. He has never caused any serious trouble - at least that I know of so far.  It's amazing the stories some of your kids think they should tell you long after it's happened.

We are grateful he will still be near by and will still be a PCA(personal care assistant) for the younger siblings who need his services and that he will be desperate for extra cash due to his high rent.  Works for me.  I loved to tell people when Chris was old enough to watch the kids by himself that I didn't know any adult that could handle these kids by themselves.  They'd be overwhelmed.  Now, of course, the screen did much of the babysitting, but he could G-tube feed Shannie by the time he was 10 and her seizures didn't seem to freak him out either - all of which he did while also keeping track of Chad, Callie, Christian, Ella and Jacob I might add.

He has a soft spot for Shannie, although his roughhousing with her when she was little freaked people out.  I would always point out the humongous smile on her face as he as roughing her up.  Callie won his heart as well.  What he loves about her most, he often says, is that she doesn't care what people think of her.  She just does what she wants.  He always "makes" her give him a hug when they see each other for the first time.

He's been a little nostalgic the last week or so and joking about how he'll miss the constant noise and messes that come with this family.  Melissa told him how she had to have the TV on all the time when she first moved out because she couldn't stand the quiet.

Letting go is what parenting is all about.  I think I'm pretty good at it, but that doesn't mean it isn't still hard to do.

Adoption story #3 - Melissa

Every girl should have a sister and Mark really wanted to go to Korea - why not combine the two! We started the process to adopt a little girl from Korea when Kelsey was about 18 mos. We were open to special needs and were hoping she'd be under 2 yrs. old.

When her paperwork came I remember holding it thinking - I hope her BD is in the spring - already 5 family BD's between Aug. 28 and Oct. 4. Well, it was Sept. 1 - oh well it'll just be the time of year for BD's I guess. Of course we immediately fell in love with Ka-Sil Lee when we saw her. Mark wanted the name Lisa, but I wanted to keep Lee as her middle name - mine is Leigh as well, just not the Korean spelling. So, we compromised with Melissa and called her Lissy or Lissa.

Melissa had qualified as a special needs child. At 3 mos. she developed a subdural hematoma which required surgery to relieve the pressure of the blood leaking into the space between her brain and her skull. Why she developed this hematoma was unknown. It is generally from some sort of head trauma, but her foster mom said there had been no falls or bumps and there was no reason to suspect otherwise as she had a long history of taking great care of her foster children. It is a mystery to this day. Korean doctors recommended removing the shunt placed in her skull leading into her stomach after she arrived in the US. They neurologist here recommended leaving it alone as it was causing no trouble for her and it remains in place to this day. The only time it's caused any trouble was during her pregnancy - it seemed to be a situation no one had encountered and after much consideration it was again agreed to leave it be.

Although not a typical special need Melissa's conception was not ideal to put it mildly. Melissa's birthmother was a 16 yr. old farm girl from a small village outside of Seoul who was walking home from school and a Korean soldier "forced himself upon her" which resulted in her pregnancy. It was information important to her story, but made no difference to us. Regardless of the soldier's decision, ultimately God alone decided that Melissa should have life and nothing else was important to us. We knew she was meant to be our daughter. I will say that I grieve more for her birthmom then any other due to these circumstances and all that she had to cope with as a young innocent girl. I wish she could know what a great daughter she created and what beautiful grandbaby girls she has. Since that is more then unlikely, I pray she has found great joy in her life.

Mark's first international trip, other then Canada, was to pick up Melissa. He was excited and probably just a little nervous. An adoption escort, a person who brings back children to their adoptive families, asked Mark to help her move 26 boxes through customs in Korea. They loaded 2 large carts, each pushing one, and customs split them into two lanes. Customs asked Mark what was in the boxes and he replied explained he didn't know they belonged to "that lady" who had already passed through customs as she was a frequent visitor. He explained the boxes had supplies for the orphanage. They opened up one box and to Mark's dismay they were full of syringes. They then removed him to the a small room with a bright light over the chair like a movie scene of an interrogation room. They proceeded to open the boxes finding tourniquets and syringes. After about 6 boxes they called in a supervisor who was very angry and shot questions at him about what these supplies were for and why didn't he know what was in these boxes. The 13th and final box had baby clothes and formula in it - thank the Lord. Then he believed Mark's explanation and let him leave. Not a great introduction to international travel, which I might add never seemed to dim his enthusiasm for it.

Mark had some paperwork to finish up the first day in Korea and was ready to meet our little girl.  He went with Miss Park, the social worker, to the foster home where she'd been since she was born, other than when she had surgery.  Mark meet the foster parents, two other foster girls that lived with them and their biological 20ish daughter.  He was able to coax her over with an Asian pear, apparently her foster mom did not think that suitable food for a toddler.  The irony is Melissa had terrible onion breath from some onion chips her foster mom had given her.

After a bit they all went outside to walk around the neighborhood.  Many of the neighbor ladies seemed to be giggling at Mark.  He wasn't sure, but wondered if it was odd to them culturally that a man would come to get a child.  We'll never know I guess.

The next day he went back to social services to finish some more paperwork.  The building was huge, but overcrowded with hundreds of kids, foster parents and social workers.  They had a tiny elevator and it was stuffed with people.  Mark, who is generally not claustrophobic, was anxious to get out. They told Mark he would need a full fare ticket, a cost we had definitely not planned for as he'd brought an employee pass for her.  Finally, all was in order to go home.

Early the next morning the foster mom, social worker and Melissa met Mark at the airport.  The foster mom, who had been very stern and stoic looking up until this point.  Cried non-stop until Mark got onto the airplane.  He was a bit shaken by that as she'd shown no emotion previously.  In hindsight it was, of course, a good sign that she was attached to Melissa.

Melissa seemed quite bewildered by the whole situation.  While waiting for take-off Melissa fell asleep.  About an hour later she woke up and started crying and screaming, "Ahma!".  Mark didn't know what she was saying, but a Korean woman nearby explained she was crying for her mother.  He felt so sad for her.  Of course in those days we had not thought about attachment or how terribly traumatic this was for her.  Seems ridiculously ignorant, but we adopted through Children's Home Society, a very reputable agency and taken all the classes required and not once do I recall anyone mentioning the fact that this would be an emotional and heart-wrenching loss for her.  It seems so ignorant, but we all just thought we were doing a good thing and were excited to have this new daughter in our family never really considering the impact it would make on her to suffer such a loss.  Loss of the only mother she'd known, the only country, culture and language she'd known.  All of that was left behind.

After about two or three hours she finally cried herself to sleep and the rest of the trip went smoothly.  When they arrived the other kids - Chad, Conor, Jonathan and Kelsey - and I met them at the airport.  Some dear friends were also there to welcome her home.

None of her early health issues have caused any problems for her and for that we are so very grateful.
She's a beautiful, strong, smart young married woman now with two beautiful girls. I found a Korean proverb that says  - Even children of the same mother look different.  How true that is in our family.  Melissa once told me she would forget that she didn't look like us until she looked in the mirror and was reminded we didn't resemble each other. Her daughters, Kaia and Brynn, have given her faces to look at that resemble her own, something she'd been missing a long time, which I'm sure have healed some of her loss in a way nothing else could.

Thank you God for choosing us to be her parents and thanks Melissa for being our daughter.

                                                          We love you Melissa!

Menial Means Meaningful

Gratitude.  Thankfulness.  Contentment.  Satisfaction.  All great words for the month of November. Many people are submitting daily, or multiple times a day, things or people they are grateful for on facebook.  Maybe it's just inherent in the life I lead, but thankfulness is a feeling I never have trouble realizing.

Today both Shannon and Chad needed showers.  I helped Mark lift Shannon, he showered her and I dressed her and braided her hair.  Mark ran Ella and Jacob to school and I got Chad into the shower.

Every time and I mean every time I perform these, menial if you will, tasks I am overcome with gratitude.  I'm grateful that I can do these things for myself.  I'm grateful that today Shannon enjoyed her shower pain free.  I'm grateful that Chad, generally, has a wonderfully positive attitude and enjoys the process of showering, shaving, lotioning and dressing. I'm ever so grateful my body is strong and the process generally never causes me any physical pain.  I'm grateful for warm, clean water that's there whenever I need it.  I am sometimes absolutely overcome with gratitude and reminded yet again how incredibly blessed I am that I live a life that is so full of meaning and significance.

Super Storms - Super Scary

I am not a worrier at heart.  I'm really not - but - watching this monster storm, Sandy, hit the east coast creates just a bit of panic in me.  I wonder what in heavens name we would do if it happened to us.

Years ago, before our final 3 kids arrived, we lost power after a terrible thunderstorm for about 4 days.  We lasted about a two days before we packed up and hit a hotel.  Last winter we lost power a couple days and ended up at a hotel pretty quickly due to the cold.  I spent the night with Callie as I thought she'd do better at home and Mark stayed at the hotel with the kids that were left.  It was below 50 when we woke up and ran to our car hightailing it to the hotel.  Thankfully, by the time church was over the power returned and I'm even more thankful we could afford to go to a hotel, although it did blow the budget temporarily.

For us, loss of power means loss of water - we have a well, which is a lot more difficult to live without than just lights and electronics.  No water means no flushing, no showers or water to clean various people at all for any reason - catching my drift? No way to make Shannie's liquid diet, nor keep it safely refrigerated.  It's pretty much a disaster for us, but again, so far we could afford a hotel in a pinch.

So my thoughts and prayers really go out to those I know and love in the east coast, but especially those with disabled family members who have medical equipment that depends on electricity or medical disorders that make it difficult to regulate their body temperatures.  For some people it's not simply an inconvenience that'll make for awesome story telling some day.  It can be life or death and that's why I feel just a little bit panicked at the thought and ever so grateful that we are safely in the middle of this great country.

Ode to Aunt Jo

A week ago my Aunt Joanne passed away.  I've been trying for the past week to put into words what Aunt Jo meant to me and to my family.  

When I was young, people who knew the Smith side of my family would call me little Joanne.  Not, as you might think, because my mother's name was JoAnn, but because I had an energy much like my Aunt Joanne.  She was full of energy and was athletic long before that was a "proper" activity for girls.

Aunt Joanne had many many fine qualities.  She was the hostess with the mostest, as we would say.  When she prepared a meal it was a thing of beauty.  I remember when we were together in New York, to take care of my dad as he was recovering from a bad infection, and I had flown out for a few days.  She made my dad a simple lunch of cheese, crackers and fresh fruit.  The way she arranged the foods on the plate and added a sprig of something or other made the simple meal a work of art.  As I commented on it she seemed surprised.  She made the common something special.  

She made my kids feel special as well.  She found out how much my Melissa loved horses and invited her to spend a couple weeks at her ranch.  Although Melissa was a little homesick, she had an amazing time.   Joanne filled her horse love to overflowing with lessons and non-stop time to ride, groom and just love on horses.

For my two youngest, Ella and Jacob, she was the grandmother they didn't have.  We were able to spend time in Idaho three of the last 4 summers.  When I gave them the choice of going to Y camp or going to Aunt Jo and Uncle Dick's house - there was just no choice for them.  Idaho won hands down. They absolutely loved being there, and I did too.

She made me feel special too.  My mom died when I was 19 and the older I got, the more time I was able to spend with Aunt Jo.  She filled a spot I hadn't realized was empty.  I was able to spend a few days with her this past Nov.  Unfortunately she ended up spending much of the time in the hospital.  She was more concerned that it was ruining our time together than about how she was doing physically. She had planned massages, something we were to do together, but insisted that I still go ahead with mine.  It was so very thoughtful, just what you'd expect.

Two and a half years ago when Melissa was married, Aunt Jo came to Minnesota.  It was a DIY wedding and even though she had only recently recovered from a serious lung illness, she couldn't wait to come. She helped me choose the salads and sent me some of her favorite recipes, which I will especially cherish now.  We spent the afternoon before the wedding preparing the salads and she helped, as she had helped so many family members so many times.

Along with her horses she loved her adopted state of Idaho.  She loved everything about Idaho and the BSU football team.  A year ago when I was out to visit by myself she had her royal blue and orange outfit on the night before a game, including the scarf she had made as she'd taken up knitting again as her energy level was lower.  She was never idle.

She was fiercely loyal to family.  Not just her nuclear family, but her extended family as well.  I knew something wasn't quite right this August when for the first time I didn't receive my usual birthday card.  She had never forgotten my birthday and mailed me a card even when I moved nearly every year for about 5 years.  She was always sure to get my new address and never missed my birthday.

One of our last conversations included a discussion about my cousin who had recently had brain surgery, but had complications and has been really struggling ever since.  It was so frustrating for Joanne that she was not able to go and help.  Doing, helping and supporting others both in a physical sense and in an emotional sense was who she was.

 Last Mother's Day I sent her a card which, unbeknownst to me, was really meaningful to her.  She pulled it out while I was there this summer and told me how much it meant to her.  My note read something to the effect that I learned much about unconditional love from watching how she treated others.  I hadn't even remembered what I had written, but she sure had and I'm especially grateful now that I sent that card.

Thoughtful, loyal, generous, giving, hospitable, caring, she loved greatly and greatly loved others.  I will miss you so much Aunt Jo and whenever I entertain you will be close beside me in spirit because no one could make people feel welcome and comfortable like you could.  Thanks for teaching me that and so much more.

Thoughts on Callie Turning 12

We've had a little over 9 years with Callie girl and they have been so full - very full.  This past year we had some highs and some lows.  We survived the lows and relished the highs.

Callie's level of anxiety became unbearable and was stealing her joy in life and spreading anxiety and concern to those of us who love her.  We finally felt we were at a spot where pharmaceuticals were no longer avoidable as a tool.  It was a timely and appropriate decision.

As she prepared to enter middle school this year we were especially concerned with the increase in noise level and number of bells she would have to endure on a daily basis.  From all that I've heard she has adjusted very well.  On her birthday Fri., I heard that a group of girls came to her table and serenaded her with the Happy Birthday song.  She was thrilled and gave hugs all around.  How cool is that?

She also was able to enjoy roller coasters - really enjoy them.  She is participating in Special Olympics and, for the most part, handling the sensory overload that is involved very well.

So as we finish out her preteen years who knows what is to be.  I've been toying with writing a book, specifically about Callie and her amazing story.  Myrikle in the Making is my "working" title.  I guess since I haven't written one page it's really an "un-working" title.  If you don't know the story Myrikle was the name her birth mom gave her.  As I've said before her name was far more prophetic that I could have imagined.

Watching how God works in Callie's life has and I know will continue to be one of the most exciting adventures of my life.  I learn so much from her and am always amazed by how much influence she wields on so many people.  She's effected so many others by her huge personality.

                                    Here's to an awesome 12th year full of amazing adventures!
                                                          We love you Callie Girl.

Just another Friday night

Tonight we have the privilege of having Dominic for an overnight.  It's a rare honor and we love it.  Tomorrow when he wakes up hours before everyone else does my opinion may change, but now while he is sleeping in the other room - priceless.

We don't know why, but Dominic's happy spot in our house has always been under this piece of furniture.  Usually he would lie on the shelf there, but tonight he fell fast asleep up against the wall underneath.

When Mark and I were having our first meeting with a psychologist for one of the kids and we were discussing our family Mark commented on the fact that for some reason we really hadn't considered the overlap in grand parenting while still actively parenting.

 We may not be able to be as available as some grand parents are, but on the other hand we didn't have to re-childproof our house, we never un-childproofed.  We often hear from other grandparents our age how exhausted they are after their grandkids visit.  We're still pretty used to the exhaustion that is parenting, albeit we do enjoy our down time much more these days, and frankly require much more of it.

Best finish up it's tIme to send the aunts and uncles to bed before the grandson's night is half over.