You are currently browsing the tag archive for the 'autism' tag.
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.
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.
The days lately seem longer than ever! Nick has been working a lot lately, the project he is finishing off a critical stage right now so he has been working very long hours. To top that off I am actually quite busy at work as well lately (I generally work extremely part time, only a few hours a week). Couple that with the fact that Gabe is teething and Tristan has been needing a lot of attention, and I am WORN OUT.
Now, after having said that, you are probably going to think my next comment is crazy… but I am thinking of homeschooling the kids.
Now I know all of the arguments for and against, I just need to decide if it’s the right thing to do for our family. That is that part of me that is counting down the years until the kids are in school full time and I will have more time to devote to work and quite possibly *gasp* some ME time. But then there is that other part of me that just doesn’t feel right about sending them off to public school. I want to teach them that learning doesn’t just happen within the four walls of a school building. That it can happen in your home, in your backyard, out in the community… everywhere! And I want to have the flexibility to take them on trips, and have them learn at their own pace, and be able to individualize their schooling experience.
This is obviously something that is going to require a lot more thought. If I homeschool I will still continue on with the work I am doing now, so I need to figure out how that would all work and how I could juggle the schedules. I also need to learn more about what is involved with Tristan’s therapy plan and whether it is in fact possible for me to teach him, or if he would benefit more from a structured classroom setting (although, I’m thinking he probably wouldn’t).
I just keep thinking that though the days seem long, they are young for such a short time. I personally loved learning as a child, but hated school in junior high and high school. I don’t think that school necessarily prepares you for what is out there in the world. In fact, looking back I felt horribly unprepared because in the real world nobody cares if you are popular, or how you scored on the last quiz, or if you’re the captain of the basketball team. In the real world, people care if you can carry on a conversation, work hard, think critically, act on your feet, and work both independently and as a team player.
So I really think that the homeschooling thing could work for us if I do my research, find some groups in our area that we can join in so that the kids do still get to do some group learning and find out about joining sports and clubs in our community.
Tristan is really inspiring me to think outside the box. There is not just one way to do things, so I’m going to explore this path and see if it just might be the right fit for us.
I don’t know why, but everything just seemed easier today. It certainly wasn’t because Tristan was having a good day. The morning started off terribly! We were all set to go out to “Railway Days” at a local historical village (Tristan is a complete train fanatic, so the trip was for him). And of course because we were trying to keep on schedule and get out the door Tristan had melt down after melt down. He refused to get in the shower with daddy and screamed the whole time, then he refused to get dressed, then he refused to eat breakfast… then he hit his brother over the head so it was a timeout in his room…. then he came down and hit his brother again. And yet, through all that, I felt calm. I can’t really explain it, clearly my husband was not sharing in my zen state of mind as he just looked at me all disgruntled and said, “And why exactly are we rewarding his bad behavior with a day out?”
I think having just being armed with the knowledge that YES there is a problem, and YES there is help, and NO it’s not my fault, and NO Tristan’s not just being a brat, it just makes everything better. I have to accept that there are good days, and there are bad days. Just the same as I will have days that I find easier to deal with than others. The fact is that falling apart under the pressure is not even an option, so I just have to keep plugging along and let the pieces fall where they may.
Having dinner last night with my dear friend Anna was really good. It’s funny, I haven’t seen her in months and I just happened to be seeing her the day of the diagnosis. It gives me strength to see how she takes everything in stride, and yet she’s still realistic about the challenges and frustrations that come along with parenting a child with ASD. We took a trip to the bookstore after dinner and picked out some books on ASD so I will dig my nose into those during the week. This weekend I just want to sit with it though, and let it sink in a little more.
As I have mentioned before, my family is not very supportive. My husband has come around now which is of course the most important person. After meeting with the doctor yesterday he is very much on-board and is excited that there is help out there. Growing up having learning and behavioral problems himself I think he can identify with Tristan (perhaps more than he would like to). I think he’s comforted knowing that so many programs exist now to help. I called my mother to let her know the results and her reaction was, “Oh, well hopefully he’ll just grow out of it.” As if ASD is just some nasty habit like biting your fingernails or sucking your thumb.
One area that I am truly blessed in though is with my friends. I am so lucky to have such supportive and caring friends in my life. Even from the online community I am a member of – these are women that I have never had the pleasure of meeting in real life, but that care enough to share their experiences and offer their advice and encouragement. One thing that really stuck in my head, was Kyla saying, “He’s still the same little boy you have always loved, now you just know how to help him better.” I know in my heart that’s true, somehow someone else saying it though just brought tears to my eyes – thank you so much for that!
I’m not a big fan of Oprah – but like she always says – when you know better, you do better. So now we have a better understanding of Tristan, and I promise to spend every day doing a better job of helping him navigate this crazy world of ours! Look out world, because there is one amazing little boy that is set to conquer anything!
We spent over an hour this afternoon with the behavioural pediatrician. He asked lots of questions and I feel like he did a pretty thorough job of getting to know Tristan and his strengths and challenges. It was emotionally draining really, the more that we talked the more overwhelmed I felt with everything that we’ve been dealing with over the last 2+ years.
Here is what the pediatrician had to say: He is definitely on the autism spectrum, and definitely has some sensory issues and issues with socializing and agression. He also feels that he is behind developmentally with his speech.
So – there is the big question – what does this all mean and what is going to happen? Well, right now, nothing. Within the next month we will get a call from someone at the “PARTS” program from the Children’s Hospital. Someone will come to our home and observe Tristan for a few hours a couple of times to determine where he fits into the autism spectrum. Depending on where he fits will depend on where we go. If they feel that he is mild, then we will go into Early Intervention which will set us up with a preschool/daycare type program. If he is more severe then we will go into more intense therapy implemented through the Children’s Hospital. We will also get a referral to a Speech & Language Pathologist to have Tristan evaluated and get a program put together for him.
So at this point ADD/ADHD has been completely eliminated. We will have to have further evaluation as to the extent of his ASD (autism spectrum disorder) and SPD (sensory processing disorder).
… it’s funny, as we were leaving my husband looked over at me and asked, “So – are you happy?” and I truly just didn’t know what to say. Am I happy my son has some form of autism? NO. Am I happy that my concerns were validated and addressed? YES. Am I happy that Tristan is going to get the help that he deserves? YES. Am I happy that life will truly never be “normal”? NO.
So, interesting day to say the least. I’m sorry if this wasn’t exactly eloquently put together. My head is literally spinning right now in a million directions, I couldn’t piece all my thoughts together if I tried.
Interestingly enough I already had a dinner date planned tonight with a friend who has a 9-year old son with Asperger’s, which is good timing. I’m sure that I will have lots of questions for her!
