Insomnia

Not mine…. Tristan’s *sigh*  It’s currently 10pm and he is on the other side of his bedroom door kicking it.  It seems he just gets worse and worse at falling asleep on his own.  We have a bedtime routine firmly established – snack, bath, book, and bed – it used to work like a charm.  In the last month or so though his sleeping habits have been awful.

We tried melatonin and for the first week I thought it was a miracle worker!  He was going to bed well and sleeping through the night and was fabulous, then he started waking up in the middle of the night fully wide awake to start the day.  Now let me tell you, I am a bit of a bear without my rest, and I do not want to hear “I wake up!” shouted at me enthusiastically at 2am, ugh!

So we’re off the melatonin now, unless we are really desperate for Tristan to have rest, then we will give him one 3mg tablet at bedtime, and another one when he wakes up.  Somebody mentioned slow release melatonin to me, but I haven’t been able to track it down locally, so I’m going to do an internet search and see if I can find a place to order it.

I just want to be able to help my little boy get his rest!  It’s so frustrating when your 13 month old baby sleeps WAY better than your 31 month old toddler.

So I’m kind of at a loss as to what to do here.  He still has a long nap in the afternoon, and I have tried cutting it back so that he is more tired at bedtime, but it ends up that he is a complete terror from the night he is woken up to the time he goes to bed at night, no fun at all.  We’ve tried not giving him a nap but this is just not an option because he will just nap wherever he is (he was curled up underneath his train table the other day).  I was given an interesting suggestion to only let him nap for 20 minutes so he doesn’t reach the REM state of sleep, so that is the next tactic to try.

I guess something has to help!

A much needed update…

My poor blog has been sorefully neglected lately.  No excuse really, well, except for the holidays, out of town visitors, and Gabe’s first birthday.  Maybe the fact that I feel like I can’t string two words together to form a sentence.  But nevermind!  I’m back and there is lots to report!

We got word that Tristan has officially been accepted into the Preschool Autism program with the Children’s Hospital – YAY!  I spoke to one of the program directors last week and she filled me in on some of the details.  It has a looong waiting list (10 months) but once he is in then he will qualify for free preschool.  The only downside with the preschool is that because we are in a small town it will mean that Tristan will just attend a normal preschool and they will send down a special teacher’s aid for him, I’m not sure how I feel about that.  In theory it sounds good – Tristan gets interaction, he gets to see how “normal” children play and learn from them.  The problem is though that most typical preschools have a large component of group singing and sitting required, two things that drive Tristan up the wall.  Plus he hates crowds.  But, we’ll see.  If all else fails I will see if the teacher’s aid can come to our home instead and we can work on social interaction through gym classes and swimming lessons.

I’ve also got dad and I signed up for some resource classes in February and March to learn about some of the programs available in our community to help, as well as to give us some tips and tricks to use in the meantime before therapy starts.  Hopefully they have some good info!

I’ve got to call the Speech Pathologist tomorrow and make an appointment, hopefully that will only be a couple of months wait, who knows these days though, everything seems to be four months minimum.

And lastly Tristan has an appointment at the Children’s Hospital to have his sight and hearing checked to rule out any concerns there.  I’m very concerned at how he’s going to react, but I think I need to give my little man more credit, he’s pretty resilient!

And man has Tristan been amazing me lately!  He has really taken to puzzles and constantly asks all day to put them together.  He can put together a 48 piece puzzle in under 10 minutes, it’s incredible to watch!  Of course he favors puzzles that are of cars, trains, busses, but I’ve managed to get him to branch out and do a dinosaur puzzle, very impressive for him.

I am also very proud and happy to say that Tristan and Gabe have been interacting so much better lately.  I will even occasionally catch them playing together!  Tristan has learned to cope much, much better and isn’t so quick to attack when he’s upset.  Obviously he’s still a two year old boy so he’s still prone to the rough and tumble, but wow, what a change.

….

And now, to go off topic from Tristan (because really autism isn’t the focus of our lives), there have been major changes around here lately!  My husband just found out this morning that he has been laid off from his job in the Oil & Gas industry effective next week.  It’s not surprising as we’ve known it’s been coming for the past month, but what is surprising is how quickly the change in the industry has come about.  Scary times all around!  We’re trying to remain positive though and we realize that this could perhaps be a blessing afterall.  There’s nothing like living on a little to make you realize your priorities in life.

And in other big, life changing news, we are expecting baby #3, totally unexpected but we are very excited!  Tristan will proudly tell you that he is getting a baby sister even though we have no idea, but he will not waiver from stating the baby is a girl.  I hope he’s right

So now that I have all the long boring update out of the way I promise to be much better at updating so you don’t have to read these dull update posts!

Self Care

I’m sure that all mother’s can relate to that feeling of being stressed out and close to their breaking point.  Havings kids can be a trying ordeal some days.  They don’t always stick to a schedule, or listen to instructions, or eat the dinner that you’ve so carefully prepared for them.  They splash water out of the tub and spill cheerios on your just-vacuumed floor.  And yet, kids are the most lovable tyrants you will ever work for.

I’m trying lately to be more cognicent of my own moods, and not just the children’s.  If the kids aren’t quite ready for a nap but I really, really am, I will put them down a few minutes early and let them play quitely in their rooms.  I figure that it’s better to go down while I’m still able to give them a kiss and a hug, rather than when I have that urge to just plop them down and run as fast as I can.

The biggest thing, as always, is communication with your spouse.  Last week was tough (what week isn’t?), and Gabe was very fussy and clinging and not sleeping overly well.  By the time Friday came around I had reached my limit of whining for the week and I was DONE.  I had to just tell my husband when he got home, “I need a break!”  So I went to the mall for a couple of hours and grabbed a coffee and it was pure bliss.  Sometimes it’s nice just to have the alone time, not even time spent with friends, but just by myself where nobody needs their sippy cup refilled, their boo-boo kisses, or an answer to the millionth question of the day.

And when you get back home, man, it’s nice to be needed again and have your batteries recharged so that you have something to give back.  I love my kids so much, but some days I need a break to remind me of that.

In other news, I have really been trying to reinforce with Tristan that actions have consequences, so everytime he takes a toy away from his brother or hits him he goes to timeout.  We have been doing this for quite awhile using the stairs as a timeout spot but it never quite worked.  I’ve now made a chair in the livingroom timeout, and Tristan finally seems to get it!  All you have to do is say, “Go to your chair” and he goes and sits there until you tell him to move.  He whines and kicks and has a little fit, but he stays.  I always wondered how the nannies on Nanny 911 managed that, but wow, we’ve done it!  It’s a big break through for Tristan.  If he’s really in a mood and the timeout isn’t working we’ll take him up to his bedroom for awhile so he can move around and play until he’s ready to come out and be nice again.

So tomorrow is the start of a new week, and hopefully a good one!  I find the holiday season to be a happy and stressful time.  I have a lot of expectations on myself of what I want Christmas to be like and what I want to accomplish, and unfortunately with two little active boys to take care, I’m sure I won’t finish half of what’s on my list.  I need to remind myself to slow down and enjoy what I have… they’re only young once, and I’m sure they don’t care whether there are fresh cedar boughs in the window boxes or not!  They just want cuddles and tickles from their mom.

Coping

Some days I just feel like I really don’t know how to deal with Tristan at all.  He is completely unable to follow directions and it is infuriating.  I think I probably say his name 500 times a day and it does not phase him at all.  I tell him about 500 times a day not to throw his toys, he doesn’t listen.  I take the toys away – he doesn’t care, he’ll just start pushing furniture around.  I put him in his room and he just tears the room apart.  GRRRR!  I am just so frustrated today.  I try so hard to keep my emotions in check but some days (like today) I just can’t.

My mom gives me advice like, “Stop him from what he’s doing and look at him when you’re giving him directions.”  I know that she means well, but this just does not work with Tristan.  I feel like she thinks I’m just some clueless parent that doesn’t try and expects her children to be perfect.  I just feel like I have exhausted all advice and all avenues right now and I don’t know where to turn.

I know I keep whining, which is why I haven’t been posting much lately.  The referral has finally gone through so hopefully we can get the evaluation soon and get on some kind of path to sanity around here.  Even now I can still feel my blood pressure is high because Tristan made me so mad tipping the dining room chairs and jumping on the couch after I told him time after time after time to stop.

I just need some help….. maybe if I say it enough times someone will listen.

MAD

I don’t know whether to scream, or cry, or both…. I’m in shock right now.

I finally got in touch with somebody at the developmental pediatrician’s office and found out that the referral was never made.  I just keep saying that over and over and over in my head, “The referral was never made” !?!?  Frustrated doesn’t begin to describe how I am feeling right now.  I would like to go in to that doctor’s office and rip his head off right at this moment.

We went to see him on a Friday afternoon, as the last patient of the day, and apparently getting a start on his weekend plans was more important to him than getting help for my little boy.  I am just so, so upset right now.

Here I have been waiting patiently, knowing that even after the evaluations we have a long road ahead of us to start therapy, and here we are, back at square one because of a doctor’s complete incompetence and lack of caring.  I am SO MAD.

The doctor isn’t in today (of course), so now I still have to wait until tomorrow for the referral to be put into the Children’s Hospital, and then I have to (again) wait patiently to hear from them regarding Tristan’s evals.

I seriously think I need a drink…

Fed up!

I am at my wit’s end this week!  My kids aren’t sleeping through the night, and they’re also not napping.  Tristan has been incredibly violent, and Gabe has been incredibly whiney.  Is this week over yet?

I still haven’t heard from the Children’s Hospital regarding our home evaluation and I am growing more and more frustrated.  I really need help, I have no idea how to handle Tristan and we are all suffering for it.

Gabe has really started cruising around and trying to take steps, but for some reason it’s really upsetting Tristan and he constantly pulls and pushes him down.  It’s awful because I feel like I have to be Gabe’s bodyguard most of the day, and I think Tristan feels like I am favoring Gabe over him.  Maybe I’m just reading too much into it.  I just want the boys to get along and be able to play together, but we are so far away from that I don’t see how it will ever happen.

I see other people’s children interacting with each other and I envy them – their bad days are our every days.  Gabe actually flinches in preparation for being hit every time Tristan comes near him.

I’m sad, and I’m scared, and I just want some help!  I know that it can take months for evals, but what on earth am I supposed to do in the meantime?  The only words of wisdom from the pediatrician was to put Tristan in his room when he acts violently – well, leaving a 2 year old in his room for the day isn’t an option.  I just don’t know what to do.

Home Sweet Home

We have been spending a lot of time at home lately rather than venturing out.  I’m sure that in a lot of ways this is probably not the best course of action – Tristan does in fact need socialization, even if it is difficult.  In terms of my sanity though, it is truly for the best.  Tristan is so much calmer and more relaxed when we are left to our routines within these walls.  The boys nap when they’re supposed to, eat when they’re supposed to, and for the most part their behaviour is pretty predictable.  Of course we still deal with the stress of Tristan’s agression towards Gabe and random temper tantrums over wanting a snack, or deciding that he wants to randomly go to Grandma’s when she’s at work.  Somehow everything seems more manageable here though, for everyone.  I am not at the mercy of what other’s expect of me… I don’t feel people’s eyes on me judging my children or how I react to them.  It’s safe here.

I hope that once we start doing more therapies with Tristan that we will be able to venture out more.  I miss being able to take the kids to indoor playgrounds and playgroups…. in a lot of ways I miss the companionship of other moms because I don’t see my friends as much as I used to.  But I’m comfortable here.

Really though, I have always been a homebody.  It’s perhaps a miracle that I am married with 2 kids.  There was a time when I was single where I worked 2 jobs, and the rare night I had off would be spent working out at the gym, followed by a glass of wine, a bubble bath, and a book.

So this all leads me to wonder – is it really Tristan that copes better at home, or is it really just me?

Update

I can’t believe it’s been nearly 2 weeks since I have written an update!  It’s been a bit hectic around here, but with nothing really exciting to report.  I still have not heard about our referrals to the speech pathologist or the Children’s Hospital and I’m feeling very frustrated because I just want things to GET MOVING!  It’s hard to be at a stand still, I want to see some progress!  I think I may call the pediatricians office today and harrass them.  I really hate doing that because I’m sure that they’ve passed along our information, I know I just need to be patient, it’s difficult though.

I’m seriously questioning though why we are going to see a speech therapist.  Tristan is definitely in the normal (if not advanced) range with speech at his age.  We sing “Wheels on the Bus” together, and the other day while we were driving he saw a school bus and he asked, “Is that the bus with the round and round wheels?”  mhmmm…. speech delay?  I don’t think so.

Tristan’s really been enjoying watching “The Backyardigans” lately and asks for the episodes he wants to watch (the Soccer Monster and Cowboy episodes are his favorites).  He was going around yesterday singing, “Save the day!  Save the day!”  Definitely put a smile on my face.  He’s amazing at remembering songs – both words and music.  If Nick is humming a song, Tristan can repeat it  back perfectly.  I think we’re going to have to find a music class for him soon!  His daddy was a singer in his youth, and it looks like Tristan might follow in his footsteps.

Oh – and we have had a HUGE development this week!  Randomly the other day when Tristan was upset he said, “I’m really mad!” I didn’t think I heard him right, so I asked him, “What did you say?” and he said, “I’m really mad at mommy.”  WOW!  This is sooooo amazing that he is not only recognizing his emotion but able to express it.  Now hopefully being able to control it will come next.  I’m so proud of him!

So that is my random nothingness update   I will try to post more, lately this past week I have just been trying to survive a teething baby and a toddler that is a handful.

Some days are just like that

Yesterday was a CHALLENGE!  Oh my goodness, was I ever wishing for bedtime.

Tristan had an awful sleep on Wednesday night and maybe got 6 hours tops – he is definitely not a child that functions well when he is sleep deprived.  Truly nobody in our family functions really well without our rest.  Of course that meant we were already starting the day off with a strike against us.

Then our plans to meet a friend at an indoor play centre fell through when she slept in and couldn’t make it on time.  I figured no problem, we would make the drive into the city and pick up a cake pan I need and meet her for a walk.  Tristan was an absolute angel in the store – he walked with me, he followed directions, and he held my hand in the parking lot…. I love it when that happens, it’s so rare but wonderful.  I thought, “Hey, maybe this day won’t be so bad.”  I should have held that thought!

We went to J’s to meet her and her 1-year old daughter for a walk, and immediately her dogs started jumping on Tristan which scared him and riled him up.  Tristan absolutely adores dogs, but there is something about them jumping that really gets him out of sorts, I can’t quite explain it, but it seems to really throw him out of balance.  So from then on, he was pretty uncontrollable.  He did not want to get in his stroller, he kept running for the road while I tried to get everything organized.  I hate that feeling of just being completely ready to snap, especially when there isn’t any option of places to PUT Tristan to calm him down.  He was okay on the walk, a little fussy, a little demanding (as always).  He actually fell asleep in the stroller, which would be great, except he woke up when I was putting him in the car and would not sleep the rest of the day.

So now I have a toddler with 6 hours of sleep, and a 15 minute nap to deal with…. GREAT!  He had an hour of quiet time in his room, but still no rest.  There were A LOT of outbursts yesterday.  A lot of hitting, a lot of crying, a lot of throwing himself around.  I hate days like that because I feel so hopeless to help him, and at the same time I can’t help but be completely frustrated because I just want him to STOP, but I know he’s not in control of what he’s doing.

And right now I feel like I at such a loss with how to deal with days like this, I have no tools.  I feel like it’s that game I used to play as a child, “Green light, red light.”  It’s like somebody says, “Green light: Your Child has ASD”…. woohoo!  We’re getting somewhere!…. “Red light: But you need to wait for other evaluations before we’ll actually help you.”  The more I learn the more I still need to know.

I am honestly scared to plan things with friends these days.  Going out on my own with the boys is fine because we are free to go when it fits in with our days schedule so as not to upset Tristan’s routines, and If the boys are having a bad day we just don’t leave the house and don’t have to feel guilty about cancelling on anybody.  We stay home most days and play in the yard, or walk over to the playground, and it’s been great.  The kids are happy, I’m less stressed.  So why do I feel bad about not getting out more?  I would love to see friends, but there is always so much to worry about with other people.  I think once we start working more with Tristan we’ll be able to put him into more social settings, but right now it just seems like we’re walking this fine line of keeping his emotions (and mine) in check.  And well, some days are just hard.

Welcome to Holland

This is a very popular passage in the Autism and Special Needs communities.  I start almost every morning reading it, it always seems to put things into perspective:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

…..

Except for me, it’s like Spain.  I never had a desire to visit Spain, it was never on my radar…. I had always dreamed of France.  When my husband and I were first dating, he asked me if I wanted to visit Europe with him.  Of course I said, “Yes!” (who wouldn’t?)  The itinerary was to go to London to visit family, go to Paris, and to visit Nerja, Spain.  I wasn’t too excited about Nerja, afterall, it wasn’t Paris.  From the moment we arrived in Spain though, I was in love.  It’s true, it wasn’t Paris – it didn’t have Notre Dame, and the Eiffel Tower, or crepe vendors on the street, or flower markets along the Seine.  But it had beautiful sunsets, and gorgeous cabanas on the beach, and amazing quaint little towns in the Spanish Hills… and it was FUN!  That is what Tristan is to me – he is my light and my joy, and man is he fun.  He has a laugh that absolutely sparkles, and a passion for life that is infectious.  True, we have our rough days, but he has taught me a lot about myself on this journey with him.

I truly believe that Tristan’s diagnosis was really a diagnosis for ALL of us.  It’s not just Tristan that is living with this – it’s me, my husband, his little brother, AND him.  We’re all in this together and it’s a path that we have to walk hand-in-hand, one step at a time, one day at a time.  And it’s a path of hope, not of fear.