halloween

Halloween is a grand holiday. Nothing but fun and sugar. Halloween 6 years ago was a roller coaster of emotions. My buddy was still in the hospital after his birth - on oxygen. No one knew why or how long it would take. He had his first trip in an ambulance to a children's hospital to see if they could find something out. Halloween was quickly approaching and a toddler big sis needed a costume but I just didn't have it in me to even think about it. My mom was helping out so she took big sis shopping. Then finally, on Halloween afternoon, my buddy got the OK and we high tailed it on home. It was such a happy moment to walk in our house with my buddy.

Our first few Halloweens were fun. My buddy used the hand me down lion costume when he was 1 and big sis picked out a bigger lion costume so they could be matching.

Then came the time when my buddy 'should' have been old enough to pick out his own costume. But he can't/won't/doesn't care. There are so many costumes that he won't wear because they are uncomfortable. It was just another reminder of how he is different.

I would try and pretend I was my buddy and think of an idea he would have come up with himself. But I must say, they were uninspired.

But this year we rocked Halloween. I was never so excited to send him to school.

I asked the kids to run towards me. At first big sis refused to run because "blue dress Elsa is 21 years old and she doesn't just run around for fun." Then I finally convinced her to run for me and her competitive side came out. I love the face she made while shoving all younger siblings out of her way.




Happy Halloween!!!

school

I have all these conflicting emotions about my buddy and school. I feel guilty that he gets so much special attention and doesn't have to follow all the rules like the other kids. I'm self-conscience that he has so many people working with him - coming out of all the taxpayers pockets. Even with all they do, I'm still concerned that it's not enough. My buddy's behavior some days is out of control and all his teachers really earn their paychecks those days. Yet I still feel like they could do better with him.

The number of formal and informal meetings we've had just seems to increase. Rara, who comes with me, will speak fluent Special Educator soon. It amazes me what it takes just to educate one little boy. Every time we hit milestones with my buddy, I keep thinking it will get easier.

I have this vision of him as an adult and I cruising in my VW Cabrio (my dream car when I was 16) enjoying the same music and heading to a movie together because we love hanging out and are into the same things. But as he gets bigger, I'm not sure my vision has any grasp of reality.

Every day while my buddy is in school, I think about what kind of a day he is having. If he is eating his lunch today. Did he kick anyone? Is he cooperating?

But there is nothing I can really do. We'll have our meetings and I will help them get to understand him better. They will improve how we work with my buddy at home. And slowly but surely he will mature.

I am grateful that he has more energy these days and we are enjoying some beautiful fall weather.







Everyone is a little off this week. Daddy is travelling and it affects everyone differently. Monkey bear asks me every day when he is coming home and she gets defiant. Rara cries more and halfway through a crying jag will just say, "Dada." My buddy literally asks me to hug him every 5 minutes. He pushes me down just so he can climb into my lap and be snuggled.

We are looking forward to Halloween. Rara dressed up for story time and for play group this week. We are getting good use out of that costume!

week 3

OK. I missed posting week 2, but I assure you I took a picture every day. Here are my favorites from week 3.


How I love whispy baby hair.


This fall was spectacular.


Playing in leaves made us all smile.


I'm working on my landscape photography, but it's not my strongest area.


She must have cast a flying spell on herself.


The only person awake when I finally got around to taking my daily picture was this handsome fella.


They love each other so much.

party

I finally figured out how to have the perfect birthday party for my buddy. Invite just a few people and have most of them not able to make it. A small intimate gathering with his grandparents, aunt and some cousins. My buddy loved it. No stress. Only one minor meltdown. Lots of fun.








These two. Sometimes they fight like cats and dogs, but their love for each other is deep. I love that they are so close in age and that they both rely on each other.




We ended the night letting Daddy at the camera so I could finally be in a picture or two. Of course it was dark out and he had to use the flash - I would prefer some idyllic golden hour lighting, but I take what I can get!

birthday blues

Every year around my buddy's birthday, I usually get a little blue. I focus on all those negative emotions I had when he was born and I wallow in guilt. For some reason, none of that happened this year. I'm still very aware that 6 years ago he was still in the hospital while I was discharged. I hug him tighter these 15 days for all the hugs I didn't have a chance to give him then.

But no guilt. Maybe 6 years of guilt is enough to endure.

I also think that the awesome Halloween costume idea my husband came up with helps. Halloween is one of those holidays that reminds me how my buddy is different. He can't come up with a costume idea (and quite frankly I don't think he even cares). He won't wear something that doesn't feel like regular clothes. The list goes on. Usually I try and pretend I'm him and think about what he might want to be. It's always understated and not very exciting for me. But this year he is going to rock Halloween.

I can't wait!

Here's my big 6 year old in the tub. Being his usual reserved, quiet self.

We hit the park over the long weekend. After watching the skateboarders for a while, playing and rolling down a big hill, they jumped at the chance to play in the skateboard park when the big kids left. I lovingly refer to it as the dirtiest slide known to man. But they loved every moment.

pumpkin

Yesterday we started the season of Holiday Fun with the traditional outing to the pumpkin patch. I love that we have all these traditions - making memories that will last. The pumpkin patch involves a hay ride pulled by a tractor and tromping around the pumpkin patch looking for the perfect one. There is also a mini hay maze with lots of fun slides.




As soon as we get there, my buddy is off and running. He heads to the horse barn where 4 VERY large horses are hanging out and tries to walk in the little stall with each horse right near their back legs. I get to carry him out before he gets kicked in the head.

Next is the hay ride. Even last year, my buddy was a little apprehensive but once the ride started, he loved every second. This year, he freaked out the whole time. I had to carry him on and hold him in my lap while he moaned. At one point he tried to escape my arms - most likely to hurl himself off the back of the trailer. I had to turn him around so he was facing me and then bear hug him. But once off the hay ride, he pumps his fist into the air and shouts "Yeah!".

All the kids loved wandering the patch and the weather was perfect. Rara hung out with Daddy - stuck to his side. Luckily we weren't too far from the barn, so we could walk back and didn't have to endure another ride.



When we were home later, we starting wondering what happened that made my buddy so scared of everything lately. Things he used to love, like when the firetrucks come to school. He gets so freaked out and won't go near them. I've heard about sensory issues in children with Down syndrome for years. But selfishly, I've never done anything about it. Between PT, OT, Speech, Special Ed, and the countless doctors we see, I just didn't want one more thing on our plate. It can be overwhelming.

Today I researched sensory integration therapy. Now I have guilt. It seems like my buddy would have really benefited from a sensory diet starting about 3 years ago. Why no one suggested this until just recently baffles me. I've started the ball rolling with my research and an email to his current special ed teacher. With my buddy in school for so much of the day, we need to coordinate our efforts so he can receive help both at school and home.

Unfortunately, we are in the middle of a long weekend, so nothing will happen for a few more days. I'm the kind of person who wants it NOW. (much like Veruca Salt) Instead of diving in to another therapy, we shall relax for two more days. Stay late in our jammies. Invite a friend over. Head to the library. Maybe carve a pumpkin if we are feeling adventurous.

big brother

Their relationship started a little rocky. Mostly because he made her cry daily. But now they have something sweet going on. Every time we come into the house, rara sits down and holds her foot out and says, "Buddy, a little help here." Then my buddy plops down in front of her and takes her shoes off for her. Now, rara can take off her own shoes - probably easier than my buddy can take off her shoes. But for some reason, she loves to have him take them off for her. And my buddy relishes in the roll of big brother.

Of course he has been known to knock her down just so he can help her stand back up again. He's still perfecting how to be a big brother.






In other news, after a check up at the pulmonologist, we discovered that my buddy was still having a few apnea episodes an hour. His machine was adjusted accordingly on Monday. And from Tuesday on, he has had awesome days at school. Between the good sleep and the implementation of the behaviorists recommendations, I think we are no longer drowning in the deep end. Phew!

week 1

I've started a 365 photo challenge where I take a photo a day for a year. I thought for accountability I'd post my weekly wrap up here. Practice makes perfect and it's a great documentation of our daily life.