The Gift of the Diagnosis

Today we had our second IEP meeting with Jake’s school.  I have read such heartbreaking stories of others’ anxiety about these meetings.  How things can go so poorly, misunderstandings can happen, people don’t see eye to eye, and stress rules.  It just is so different at our school and I am so thankful.  I’ve also read some other stories like ours.  We are those people with the amazing team who love our son, who get him, support him, love him, and listen to us.

I cannot believe what a gift this autism diagnosis has been to me.  One year ago, I was so worried about Jake.  I was so scared of kindergarten, but I was even more scared of more days of him being home.  I didn’t know if I should hold him back a year, or put him in school.  I felt selfish because I didn’t know how to handle him and I needed help.  I felt hopeless because it was as though my relationship with Jake was based on rules, punishments, and not getting anywhere.  Meltdowns were violent, heartbreaking, long-lasting, and often.  I didn’t know if he was autistic or not, I didn’t know what that meant, I didn’t know what I was doing.  I did know I needed help.

Now he is so successful.  He is so happy.  He rarely has a big meltdown.  He knows how to calm himself down when he is upset, and I know how to help him.  Jake can articulate what he needs and how he is feeling, and I know enough to listen.  He is doing so well.  I am doing so much better.  I am able to stay calm when I talk to him.  I am able to separate discipline and support, punishments that are important and effective and when all he really needs is time and help cooling off.

What a window.

Being officially autistic has given Jake such opportunities.  He is pulled out of the kindergarten class with a small group for learning assistance twice a week.  He is pulled out with another group for speech and language in social situations support once a week.  He gets one on one time with his behavior consultant twice a week at school and twice a week at home.  There are two educational assistants in his class who listen to him, support him, prep him for transitions, and make his day run smoothly.  And of course, his teacher is incredible.  She has encouraged him and listened to him.  She has directed all of this.  She is amazing.  We are so, so blessed.

I know that there are other kids who have similar needs and need support in similar areas.  But our diagnosis has given us access to so much extra support.  There are times I wish they had a similar diagnosis so they could have all the good that we have too.

There are days I don’t know why Jake has to deal with this.  I don’t know why this happened to my baby, to our family.  Days like today, I don’t know why it happened but I am thankful.  How complicated.  I want to share this blessing.  I want to share.

I am prayerful.  I believe that God gives to us with responsibility.  We are stewards of His blessings.  Today I am resting in relief, soaking in the joy that came from this meeting with the people who make up our team.  I am praying for direction, for keys to what to do in the future.

I do know that my desire to focus on the positive, my attitude about Jake being autistic, has been strengthened.  There is nothing in the DSM-III, DSM-IV, or DSM-V that says autistic kids are anything less than incredible.  Like Temple Grandin said, “Just different.”  And he’s such a cute little kid.

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Projecting My Ideas of Fun

I struggle with what to post on this blog. Daily, there are so many things that I could tell you, that I would really love to write about. My husband recently referred to it as “blog fodder.” I think that’s hilarious. But really, I struggle. The thing is, this is public. I want to share our stories, encourage and educate, but the reality of it is, I don’t want to embarrass my kids. One day they might read this, and I would hate for them to think that I was sharing things about them with the world that they would really rather I did not. It’s a tough one for me.

I want to be open, and they are the most important people in my world, so I need to be able to be open with them. At times I feel like I might be censoring some of our harder moments in an effort to protect them. I am okay with that.

However, it really is hard sometimes. I think this is something that is worth sharing, because when they grow up and have kids of their own, I want them to know that I get it. I love them and support them no matter what, and parenting is hard. There is so much to learn. I feel like I am self-reflecting a lot lately.

Recently I have tried to do things I thought were simple and fun, only to have Jake fall apart. My attempts to provide easy happy activities have turned disastrous. We planned to go to a nearby provincial park and have a fire, roast some hot dogs, and play outside for dinner. I wanted to be away— from people, from my house and our mess, and just relax and enjoy my kids. We have done this so many times, it felt like a guarantee. Just go out, relax, have some fun.

Well, we had not done it with three kids before. And we had not done it yet this spring. But I wasn’t worried. Not at all. Jake was tired, but we went to church. It went well. I had to pick up some groceries and my husband had marking to do, and so the boys went to their grandparents’ house for an hour while Penny napped. The plan was beautiful. I picked them up after shopping and we went home to load up and head out.

I don’t have any idea what went wrong first. Jake didn’t want to play in the sand. He didn’t want to play in the water. He was hungry. We toughed it out another fifteen minutes, no, ten, no, five, then headed up to make our fire. I forgot the boys’ water bottles. There was lemon water but that tasted funny.  There were cans of carbonated water but that was weird. There was Penny’s water, and so Jake finally settled on that. After tears. Many tears. Then the fire was too smoky. Then the hot dogs weren’t right.  Then he was tired and ready to go home. We toughed it out again, trying to regain some feeling of fun, of relaxation, when he was so wound and not fun. Argh! Miserable.

We finally left, and made it home for a pretty early bedtime. It wasn’t all bad. Penny loved it. Aiden loved the sand and the lake and was sulky after we left that part. I promised him I’d take him back.  Being in the trees and the air was wonderful.

I just didn’t want to skip doing something that we all loved just because Jake was falling apart. Partially because this was something he loved so much last summer, I really missed that. But the whole day left me drained and emotional. I can see now that there was too much going on in one day. If I want to plan a beach picnic, that needs to be the only real event of the day.

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Another night I wanted to plant the seedlings in the garden. The boys have been caring for these little plants and helped me plant the seeds. I wanted them to be a part of the next stage. However, Jake was not really up for it. Everything was bothering him. The sun, the dirt, the brother who was in his way.

Again, there were tears and whining.

Eventually he was yelling, “I am tired! You are not listening to me!”

And so we cut and ran. We went inside, and got ready and put the boys to bed. I felt like it was the only thing to do. I finished the planting myself and tried to not be disappointed.  I want to listen to him. I want him to know that I am trying. It’s so hard, when I feel like saying, just have fun! But it isn’t fun. Not for him, and therefore, not for me. Of course, we were up later in the night with a fever and that totally explains it all. He wasn’t feeling well. I’m sad for him. I’m sad for all of us! This isn’t easy!

Last year, a mom of an autistic student of mine was describing her struggles when taking her son to Disney Land. She wanted him to go on rides with her, so that he wasn’t missing out on any of the fun.  Some of those rides he adamantly refused, and she was reflecting on this with me. She said that it wasn’t right that she was trying to project her idea of fun onto her son, that he needed to enjoy what she enjoyed. It makes so much sense to me. Her son had more fun watching parades, shopping, and on some of the easier rides.

And yet, I just want to enjoy these things together. I don’t want to stress him out, I just need to figure out how to make sure that I am listening, prepping, and, I guess, doing more to make situations work for Jake.

The Role of the Parents

One of the very first things I encountered when I started reading into the world of autism is the role of parents.  A very famous autistic, Temple Grandin, is an accomplished author, professor, researcher, designer, and advocate.  However, even a glimpse at her story reveals how incredibly influential her mother was.  One of the first books I read was “The Spark” by Kristine Barnett.  It is the story of a mom who gave her autistic son an incredible gift, helped him to conquer elementary school and now is supporting him through his university career while he is still negotiating childhood.  He moved from college to university at age 10.  Then I read “Autism Breakthrough” by Raun K. Kaufman.  It is another incredible book, and he shares his story of autism and how his parents and their innovative ideas and dedication have helped him so much that he no longer identifies as being autistic at all.  Now that idea may be controversial, but what did become overwhelmingly clear to me was that there is a common link in these stories, and it is the parents.

As I learn more about Jake, and who he is, how he works, and what he needs, it is easy to become overwhelmed.  I truly believe that he needs socialization and that the structure at school has been the most incredible gift.  He is doing so, so well.  And yet, I see the biggest leaps in his social connections, his development, and his social skills during the holidays.  This has always been the case.  I can remember as far back as when he was two years old, he would come back from a short trip to visit my sisters family with so many new skills.  I always thought that he was learning from his cousins.  I am sure he was, but now I also think he was learning from me and my husband.  You see, when we travel, we are ‘on holiday’ and we spend considerably more time playing, reading, connecting with Jake, and considerably less time at work, doing chores, marking, planning, and doing adult activities.

Now I can see clearly that the more time he and I spend connected, doing what he wants to do, the better he does.  Jake is more relaxed when we have time to spend together.  He is less bombarded by all of the things that drive him crazy.  He feels safer, calmer, and is able to learn more.  It doesn’t work in small doses.  I can’t just pick him up from school and play Lego for thirty minutes and think that we will automatically have a smoother bedtime, although it probably wouldn’t hurt.  It usually takes him about 24 hours to relax.  That is why the ‘on holiday’ times always are so influential.

I can see this in my relationship with my husband too.  We can count on having some sort of nasty fight every school break.  Sometimes even on a long weekend.  It’s hard to connect when we have so much time together all of a sudden.  But afterwards, we are more in tune and able to relax and have a wonderful time if we have that time to plug in to the relationship.  Jake needs time to blow off steam, have meltdowns, cry, push, hit, sleep, and then he can relax and be connected with me.

It is making me very excited about summer holidays.  This will be the first year I have known about his autism and all the things that make life hard for him.  I can’t wait to connect with him and help him have even more fun this summer than usual.  Fun that he finds fun.  Time spent drawing complicated charts, mapping out the baseball season, whatever he wants.  Because I know now that those are the things that calm him, that connect him to himself and us, those things that make him happy, make him so happy.  I just want to do more of them.

Last summer we did get into somewhat of a routine, but this summer we will have visual schedules.  Last summer I made sure that we were at the beach in the morning and home in the A/C in the afternoon because I was pregnant.  This summer I will be able to watch to see what times, temperatures, levels of light, Jake and Aiden enjoy the most.  Last summer I was as patient as I could be, this summer I will be more patient.  I just enjoy making my kids happy.  Not spoiling them, indulging them, just encouraging their joy and being a part of it. It’s so intimidating to think that I am the autism mom, the one that is going to have a gigantic impact on Jake and what he thinks of himself, what he eventually can do or not do, what he can cope with and what he just can’t.  But when I make these little mental breakthroughs, like, “Hey, when he’s happier, I’m happier!“ it just makes me feel so blessed and excited to be his mama.

the Star Wars presentation

Well.  I have to brag.  I want to scream to the mountains!  My kid is amazing!  There is nothing, NOTHING he can’t do!  My five year old, my autistic five year old Jake, did a presentation today for his class.  A 25 minute presentation about Star Wars characters. For twenty-five entire minutes, he ran the class.  He stood in front of the room.  He described the characters, spoke about what makes them interesting, and answered his classmates’ questions.  He totally held their attention.  He wasn’t nervous, wasn’t shy.  He was confident and well-spoken.  He remembered everything, he had no notes.

His teacher suggested the presentation several weeks ago at our parent-teacher conference as a way for him to bring some of his passions into the classroom.  I thought she must have been just being sweet, but when I followed up with her, she booked a time for him to talk to the class.  We hooked up our laptop to the projector, so that the pictures of the famous faces were big and bright, and he just took over.

Of course, because he is singularly focused on a topic, there were many characters that no one has ever heard of except for the most passionate of fans, and Jake.  But the presentation went in alphabetical order (of course), building to a fabulous picture of Yoda flying through the air, light saber in hand, towards an enemy who has no chance.  I was beaming.  Glowing in the reflection of my son in his glory, sharing his excitement with a class of his peers who were taking in every word.

Things that surprised me will keep coming up as I relive it all night long.  How one little girl asked, of Queen Padme Amidala, if she was a princess.  How Jake responded, “No, but just wait, there is a real princess coming up.”  Then, when Leia finally did come up, he called her by name, and said, “Okay, now this is a princess.”  Incredible.

How some questions were handled seriously, whether Super Battle Droids have heads or necks.  But other questions were laughed at, together with the asker, whether Darth Maul survived.  As if that is the funniest thing ever. And of course, the hilarious Yareal Poof!  Does he poop?  Because poop sounds like poof!  Get it?

How one little boy, in the middle of the presentation, asked Jake if they could have a play date.  How another asked, right afterwards, if he could come over to watch Star Wars.  Jake hasn’t even watched Star Wars.  He has watched the Lego series and read the books.  The real thing would give him nightmares, and since sleep is so precious, we haven’t risked it yet.  Maybe they can watch some Lego Star Wars together soon.

Amazing.  I can’t get over it.  What an opportunity.  His teacher, his Educational Assistants, they were all impressed and spell-bound.  I am one proud mom.