Flyer Delivery

Luke never played exactly like the other kids.  He loved trucks but didn’t drive them around and make sounds; he didn’t play with action figures; didn’t play board games; didn’t have a long attention span for blocks, puzzles and other creative play.  He DOES like to pretend a lot, though, in his own way.  For instance – he always did and still does – love to pretend he is on the phone.   Occasionally he has been known to get hold of a real telephone and laughs hysterically when he hears the lady on the other end that says, “Please hang up and try your call again.”  Well, maybe it isn’t the lady after all.  Maybe he is anticipating the beeping that comes AFTER the lady on the phone…   There is a toy phone at Nanny and Papa’s house that he loves to use and if there isn’t any available, you can often find him with his finger stuck in his ear having a great conversation with any one of his favorite people.

Another thing he loved to do was pretend he was delivering the flyers.  Across the street, and to the neighbours on each side of us.  THANK GOD for good neighbours who must have heard their mailboxes opening and shutting a million times only to find nothing inside!   He would get soooo excited when the guys used to come deliver our flyers to our mailbox, rushing to the door to say hello.

One day I got the nerve (like I said, I’m a whimp who doesn’t like to approach strangers!) to call the man who was delivering our flyers and told them about Luke and his love of pretending to deliver the flyers.  I asked if they would mind giving us enough to deliver to our street and we would do them – no charge!  But he wouldn’t hear of that, he said Luke could help him with our street.

So, the next week, Paul (the flyer delivery man), came to our house and all three of us went to deliver the flyers to the houses on our street.  He let Luke carry his own bag and he was absolutely THRILLED.  He talked Paul’s ear off – was super excited and needed some help getting the flyers in the mailboxes.  He couldn’t wait till the next week to do it again.  Paul, a middle aged man in a well paid job, said he enjoyed delivering flyers in his neighbourhood.  It was good exercise and he got a chance to say hello to the people that lived around him.  Being one of those special people you meet in your lifetime, he was awesome with Luke.  He eventually got to know him and began doing things to make it a little easier.  He started bringing a mailbag with just the right amount of flyers.   He would call ahead and then rearrange his route if we weren’t quite ready.  He would save our street and do it later if we happened to be away.  He talked to Luke and showed interest in the stories he told.  He got to know that Luke loved Pepsi and would occasionally bring him a can for a treat.  

Whenever I would thank him for all the extra time he spent (because we did slow him down) and for all the times he went out of his way to accommodate us;  he said it made him happy to spend this little bit of time each week with Luke.  It wasn’t hard to see that Luke enjoyed his company as well – he was always VERY excited to know Paul was on his way.

We did the flyer route on our street with Paul and his son every week for about two years.  We incorporated his enjoyment of delivering things in his school program and he delivers mail to some of the teachers.  It has been a great job for Luke that earns him a little bit of money, and gives us many chances to try to encourage appropriate social interaction with others. 

Then they made some changes on the delivery days which conflicted with Paul’s work schedule.  We ended up taking over the entire route and Luke still will often tell me that Paul is retired now and does not deliver anymore.  We miss him a lot.  But Luke has slowly widened his delivery route from just our street to encompass the block.  He is a lot faster now than in the beginning – and even though he can’t tell me this, I think he feels proud of his job well done.

Away from Home – Final Week Four

Luke is now home for good from his four week stint at the special school which took him away during the week and home on the weekends.   It has been a roller coaster of emotions for me which I really wasn’t totally expecting.   One minute crying, the next minute full of hope.   Thought I would enjoy a break more than I did, had daydreams of  dancing down the street whenever I wanted - but there really wasn’t much pleasure in it at all.  Did get in a couple movie dates and a supper out.  Spent a lot of time working, then wandering aimlessly.

During the last week, I stayed overnight Sunday and followed him Monday to all his classes and observed his daily routine.  It was a good day, and Luke impressed me many times with his good behaviour and skills he learned.  The staff made me laugh with some funny stories throughout the weeks he was there - and the other students I met were very sweet and patient with Luke.  I especially enjoyed watching him playing the drums in music class and listening to the gym teacher tell me how excited Luke got when he made the back up noise for his bike when he got stuck.  (Of course Luke got excited about that – the back up noise sounds like the alarm clock….  it’s a wonder he didn’t get himself stuck the whole time he was in gym class just to hear the back up noise!)

Although it would have been nice if miracles could have occured and he came home able to look after his own personal hygiene (the main goal) – I was not surprised that this did not happen.   The school said his four week placement was not near long enough to make significant gains.  If I consider keeping him in school another year, I may have the option of sending him back, for a five month placement.  Humph.  I don’t know WHAT I think of that.  

So, what was the point of it all?  Well, I did get some good advice and suggestions on what needs to be worked on.  Most of it was involving a sensory diet – which Luke has been lacking in.  We HAVE been doing some things but not near enough what they are suggesting is required to actually get him where he needs to be in order to become more independent.  I have gained an ally in getting these suggestions implemented in his school program (and boy do I need all the allys I can get).  And maybe most importantly, I think I have renewed energy to keep working on these milestones that I just have not been able to accomplish.   Because a person gets tired of trying to teach someone how to brush their teeth for 15 or so years and okay, maybe I was giving up a little….   

As I was driving in Friday to pick him up for the final time, I was very excited to see him, but dreading the constant battle of trying to change the subject from his new favorite person – Jennifer.  Now, my husband and I disagree on this – but I say I have never heard Luke pronounce Jennifer correctly – he says he’s heard him say correctly once or twice.  Luke has a cousin that he often sees with that name and it has varied over the years from Jeminer to Jemither.  When we were in the car, of course the topic arose and he said something about Jennifer.  My ears perked up.  “Who did you have pizza with?”  I asked.   Excited that I actually acknowledged this statement, he happily tells me “JENNIFER.”  Pronounced per-fect-ly.  Well, I was so excited to actually hear him say it correctly, I talked to him about Jennifer aaaallllll the way home.  

It is Monday evening, and I have been trying to get this blog done because I know some people have been wondering how the last week went.  But I have either not been here or home listening to Luke’s non-stop chatter which makes it hard to concentrate.  It’s good to have things back to our normal!

Week Three – Away From Home

I had a dream about Luke last night.  I dreamt that I was shovelling snow outside in the yard and he was with me.  I realized that he wasn’t talking so I looked around and couldn’t find him.  I followed his footsteps in the snow to a house in the woods where a lady and her child were outside.  I asked the lady if they saw a boy go by and she said yes but couldn’t tell me which way he went.  I lost the footsteps in the snow and he wasn’t answering my call.  I woke up in a cold sweat with my heart pounding. 

That might tell you how I’m feeling this week.  I was a little more relaxed about the whole situation last week but when I picked Luke up THIS Friday he was irritable, didn’t seem as excited and didn’t tell me many stories except that he was screaming because someone took his magnadoodle.  (He LOVES his magnadoodle!)  Apparently he had a bit of a stressful week – and even supposedly twisted one of the teachers arms.  SIGH.  They were having trouble getting him to bed one night, he didn’t want to stay in his room after lights out.  At home Saturday and Sunday were better, no more crankiness and he seemed to still want to go back on Sunday. 

Dropped him off and he immediately went to say hi to Jennifer, who was in the office with three or four other staff.  They didn’t seem overly welcoming, and were still in the office chatting when we left Luke wandering around to his own devices…

It’s Monday and I get a call suppertime.  Luke had a bad evening – up till 12:30, wouldn’t stay in his room.  Apparently pulled one of the staff members hair. 

Oh, and no miracles yet – he hasn’t decided to brush his own hair, teeth, wipe his butt or put his clothes on the right way 100% of the time because I’m not there to help him. 

So, it’s gonna be another looooong week.  My heart hurts - I want him here with me but I won’t be here forever.  I HAVE to try these things that may help him become a little more independent.  Slowly but surely we’ll keep trying – and no matter where he goes nobody will love him unconditionally like we do.  But that sure is a hard thing for a parent to accept.

Week Two – Away from Home

I am a little embarrassed.  Maybe I was a little stressed last week – okay, I was VERY stressed last week when I wrote about week one of Luke going away.  Maybe I was a little distraught leaving him for the first week – it was VERY emotional and down right terrifying.

The week went by very slowly and I was really happy when Friday finally arrived so I could pick Luke up and bring him home for the weekend.

He was happy to see me and his cousin but he was also super excited to tell me all about his week.  And he never stopped – all weekend.  He told me lots of little stories, he told me names of his teachers, what he did, what he worked on in school - what he ate – it was fantastic!!!  I hardly ever get this much information out of him.  I mean, I get lots of talking – A LOT of talking - but there were some good conversations this weekend.   Now, mixed in with that was the repetitive questions and statements about the new “obsession” – one of the gals who work with him in residence.  Jennifer.  I heard that name a million times this weekend and I know it is going to eventually be a banned name in this household.  Only drawback with that is a close family relative happens to have the same name.  However, we’ve already discussed her choosing a code name for when I have to call her – so I don’t start Luke on the topic of Jennifer accidentally.

Anyway, he came home all in one piece, happy – and excited to go back.  I WAS SO R-E-L-I-E-V-E-D.  He had a communication book telling how his week went – which was not too bad – considering.

I dropped him off again this evening - for his second week.  And I feel good about it.  Jennifer was there (thank heavens – because he was really counting on that one!) – to welcome him back.  There will be more kids with him in residence this week which could make it a little more stressful for him than last week – but then again, maybe it will be a good thing – more chances to learn proper social skills (or at least have lessons)…

This week I don’t think there will be any tears shed – I will breath easier, no more pains in my stomach.  I think I will enjoy some of the silence and maybe even get a little excited about my ability to go out the door whenever I choose.  And instead of needing Friday to come to alleviate some of the dread – I will be looking forward to Friday in happy anticipation of the awesome conversations I will have on the weekend with my boy.

Week One – Away from Home

For about six months now, we have known Luke would be going away from home to attend a “special school” for four weeks (home on the weekends).  He would be staying in residence, attending classes through the day.  While there, he would be working on daily living skills intensively and hopefully become a little bit more independent.  I have been awaiting this time with a little bit of apprehension, some excitement, a lot of enthusiasm and a touch of hope.  He doesn’t spend much time away from us – a week for the past two summers at camp, in the company of our trusted friend Hilary.  This is the first time in his 18 years that he has been in the care of complete strangers, in a strange place - and not just for an hour – for a whole, long, week.

So, it was right up until the weekend of our departure, I was excited about this – planning the things I would do while I was free to come and go as I pleased.   Looking forward to the new skills Luke would hopefully learn or at least get a fresh approach on how to work on some things…

What the heck happened???   And WHAT was I thinking?!?!?

Friday night, Saturday and Sunday I had cramps in my stomach like you wouldn’t believe, running to the bathroom, feeling like I wanted to vomit…. meanwhile trying to be excited with Luke – because HE IS EXCITED. 

Finally the time came for us to load the luggage in the car and be on our way (oh, but not without one more trip to the bathroom for me).  We arrived at the school and were the first ones there.  Luke was waaaay, waaaaaay over the top excited (and maybe a little nervous too) – he just can’t tell me.  We were shown to his room and told to unpack.  Luke could not stay still for one minute, he was out his door down the hall in the office, frantic to talk to the girls who were working on his floor, wanting to know where the kids were.  When the “kids” arrived, one was a 16 year old boy over 6 feet tall and the other was probably around 17 in a wheelchair – Luke continued to search and ask where “the kids” were.   I guess they were not who he was expecting to be spending the week with.   Luke immediately started barging in each boy’s room, asking questions of them.  They have visual impairments but they are definitely NOT anything like Luke.  They seem like pretty average teenaged boys to me.  Oh my.  How will they cope with Luke?  

The staff made their first big mistake when they started telling Luke that he was not allowed to go in the boys’ rooms without knocking first.  And in their sing songy but stern voices, they would say, ”Noooo, Luke, you can’t do that.”  Oh brother.  Luke’s interpretation of that was -  “Wooo hoooo, let the games begin!”  And he was then bolting in their rooms every chance he got, laughing hysterically.  I watched what was happening, wanting to know how the staff would handle it, wanting to see Luke’s reaction – feeling the knot in my stomach grow tighter and tighter.  While the staff were in their office Luke made another run for one of the boy’s room.  This time I went in as Luke was pouncing on the poor young man lying on his bed.  The look of horror on his face broke my heart.  I had been there about 1.5 hours and wasn’t sure if I could stay composed much longer. 

The nurse wanted to meet with me in her office so I left Luke and went out with her.  I tried to keep it together as she told me how much the kids loved it there – for instance, just last week some of them went to make teddy bears at one of the local malls and they had soooo much fun.  Making teddy bears is NOT something Luke would enjoy, especially in his hyper state.  I could feel the colour draining out of my face while I tried to give some semblence of a smile.  I think she was just trying to make me feel better but she just made it worse.

I quickly got out of the nurse’s office and went to my own room in the parent’s quarters where I could finally have my first cry.  When I returned to Luke’s room at 8:30, he was in bed.  He was asking to go, they said.  So, I sat down and tried to explain how to handle situations when he does something that he is not supposed to.  It’s my fault – I am so used to having people around that know all this – I didn’t even think about that!  And it is important – how could I have not thought about that???

SIGH.

I stayed all night and went to check on Luke in the morning – he seemed a little bit calmer and they were ready to go to school.  As we were leaving, the other boys were having brand new locks installed on their bedroom doors…

I came home; feeling empty.  There is none of the giddy excitement of having time to myself that I enjoyed when Hilary took him to camp.  I feel sick to my stomach all the time – I miss him talking me to death – I am worried, worried, worried.

I call every night to check in and ask how he is doing.  What is the answer?  “He’s doing okay.”  Okay?  Okay?  What does THATmean?  I ask if there are any problems, any issues I can help with but every person I have talked with all say there is nothing.  But if there was nothing, why aren’t they saying he’s doing great or even good is better than “okay”.  Doesn’t make me feel any darn better.  Jeesh.

It’s a long, slow, hard week and Friday can’t come quick enough.

The Talking

Oh, nobody can really understand this unless you’ve experienced it.  And not just for an hour’s visit. 

I remember when I first joined an autism support group – most parents were worried their children would never talk.  Some not speaking, some only saying a few words.  I would jokingly say, “Luke is the opposite, he talks too much.”  I wouldn’t like to complain about it too much, because I knew these parents would much rather have too much talking than not any talking. 

BUT too much talking can be stressful too.  Non-stop, every waking moment and sometimes through the night, it doesn’t stop!  And Luke needs to be acknowledged when he is talking to you.  One of the few things that irritate him, is when you ignore him OR tell him to stop talking.  He DOES NOT like that!!

I wish I could explain what it is like to have someone beside you almost all the time, saying the same things over and over and over again.   Oh yes, I TRY to manipulate the conversation and expand it, but he is soooo tricky.  He can somehow get it back to the topic he wants to talk about without you even realizing what’s taking place.  And of course because he talks non-stop and I cannot, I am often heard acknowledging him with “Um hum, um hum” or “yes”
while my mind is other places.  Then suddenly, you realize, you said “yes” to visiting Nanny and Papa when you know they aren’t home…   or your husband is saying, “No, I don’t know why she is telling you that Luke, Ed is not coming over tonight.”  Oh jeeze, you HAVE to be alert all the time or you get yourself in trouble.

I often wonder how much Luke’s conversational skills would improve if I was a talkative person.  However, it tires me out, I just cannot keep up.  Maybe I have a short attention span, limited intelligence, and not enough patience.  I just cannot keep focused on the topic.  I can’t think of enough to say to out-talk him or enough questions to ask.  I try but he always ends up winning and back on his favorite subjects with me acknowledging with “Um hum”s.

He talks so much and so fast sometimes it is hard to understand him.  He talks to me so much he even shorts my name when he is on a roll, calling me “Uh” instead of “Mom”.  Nope, I do NOT acknowledge him when he does that.  He talks to me while I’m in the washroom, taking a shower, while HE is in the washroom, while I’m watching TV – I’m telling you, it doesn’t stop.  Sometimes, when he just isn’t getting anything out of me, he will sit on the couch and talk to himself, asking and answering his own questions, telling stories – out loud of course.  I wonder if he can talk to himself in his head like we do?

When he is finally in bed for the night, I just breath a sigh of relief and close my eyes and listen to the quiet for a moment before moving on. 

There have been times when he is not talking constantly.  For instance when he is obviously very sick, he doesn’t talk that much.  Two summers ago, he went to summer camp for a week with his friend, and personal care worker, Hilary.  When he came home he was soooo uncharacteristically quiet for about a month that I was convinced he must be very sick - he just did not have any obvious symptoms.  He had no fever, he was eating, sleeping okay but WHY was he so quiet?  I was waiting for any sign that I could take him to the doctor so I could say something other than he isn’t talking every waking moment…  I was so worried I couldn’t even enjoy it – and then it just started up again.

It was then that I decided, no matter what, I would enjoy the next quiet spell and NOT worry.  I’m still waiting.

Marriage

The incidence of divorce rates among families with special needs children (specifically autism) is almost 80%.

Tim and I have been married for almost 21 years. 

No question about it – there has been rough times but we are still hanging in there.  These days it seems many parents of “normal” families are also splitting so we all know that even an average marriage has many challenges.   I guess this would be my perception of the “extra” challenges we face as a married couple.

1.  The ability to have a conversation.   This is very often impossible when Luke is anywhere in the vacinity.  Unless of course, the conversation includes Luke – which means it is about summer camp and who he sees at summer camp and what he is having for breakfast, lunch and supper and who will be getting him breakfast, lunch and supper and what happens then……  Any stories to relate about our days have to be done in between answering the hundreds of repetitive questions while Luke is 2 inches away from your face waiting for his answers or while he is demanding you find something he has put down and can’t find because he can’t see that well anymore.  I find it very hard to listen and participate in two different conversations at the same time so I prefer to avoid it whenever possible.  So, really, uninterrupted long (and I’m talking more than two minute) conversations really only take place after 9:30 pm when we are both at home and have the desire to talk about anything when there is the first bit of silence of the day…

2.  Family Outings - We have had family outings but it is definitely a challenge.  We have done a weekend away a few times.  But it usually means no sleep at all for anyone unless Luke has a separate room all to himself (and that is impossible to do in a hotel and hard to at someone’s house).  If you try to sleep in the same bed or even in the same room as Luke, he will NOT sleep but instead talk and laugh and sing all night long, while poking your eyes, and needing answers to questions.  So, for many reasons long and short family outings just dwindled and we have to be content with staying close to home.

3.  Getting out as a couple - I think the way we were before we got married has helped us get through this today.   We did a lot of things together when we were “childless” but we also had our own interests and activities that we did on our own.  When the kids were smaller, Tim was the one often leaving to do his own thing while I stayed with the kids and really didn’t mind too much.  Like most mothers, you kind of put aside your own interests and hobbies and focus on home and work so I really didn’t have anything that was “mine” to do. 

But as the kids get older and don’t need to be tended to quite as much, I have found some outside interests and am enjoying socializing with girlfriends more and more as time goes on.  So, Tim and I have our own separate social lives outside of the house.  This DOES take a lot of cooperation, trust, understanding, and some biting your lip but it works for us.  Both of us enjoy getting out and being active – and if we had to wait until we could go together, our outings would be rare.   Some day, we know we will be able to do things together again – and we can wait.

4.  Stress – Everybody has stress to deal with – ours is just different than the “normal” family.  And I’m not sure which I would rather be dealing with, to tell you the truth.  We don’t have to worry about drugs, alcohol or sex – but we do deal with an 18 year old who has trouble controlling bodily functions whenever he is not feeling well, who still needs help bathing, brushing his teeth and dressing etc.  Well, I could go on – but you get the idea.  Maybe the idea of having to look after someone that way even after they are an adult – can be hard on some marriages.  Because if  it were just ONE person in the marriage assisting with the daily clean up and caregiving – I think resentment would set in.  Thankfully, this is another area where we work as a team.

Hopefully our love for each other and for BOTH our kids, as well our respect and support for each other’s need for freedom and the desire to pursue our own interests – will carry us through the challenging years to come.