come so far

Since I've been down on my buddy's behavior lately, I thought I'd take a walk down memory lane and focus on just how far he's come.




When my buddy was little, he was allowed in the kitchen. I emptied a drawer and filled it with toys. He would toss the toys out of the drawer and use it to climb. As he became a menace in the kitchen, he was no longer allowed in. Even after he was gated out, he used to throw every toy he could get his hands on over the gate and right into the cat's water. When we moved into this house a year and a half ago, I was worried about the open kitchen. I took the Potentially Deadly Weapons (vegetable peeler, rolling pin, pastry cutter, etc) and put them all a drawer with thoughts that I could somehow lock it if I needed. So far I haven't needed to lock it.




Starting when my buddy was 2 years old, I had to put all the kitchen table chairs in a corner and push the table in front of them to stop him from climbing on top of the table and swinging from the light. (yes... he actually did that once) All the floor lamps, coffee tables and pictures were put away. You couldn't even have a cup with any liquid on it anywhere within reach. My buddy has outgrown all of that. It is amazing when I think about all the things he would get into. I honestly never thought I would see the end of that era.

When my buddy was 3, he would push or tackle every child smaller than him. Every. Single. One. I had to hover over him whenever we were in public. His favorite were babies. Pretty much every baby he came in contact with ended up crying because of him. Now he's still not 100% safe around babies, but only because he would try to pick them up and hug them a little too tightly.




I've repressed the memory of just how many full plates of food my buddy threw across the room. And how he used to spit out whatever was in his mouth just to take a drink of milk. Meals may not be exactly civilized but they are so much better.

Smart. That boy is smart. I'm sure he wouldn't do great on a test that asked him which number was greater than or less than, but when I tell him he has 2 more minutes to play - he asks for 10. When I tell him he needs to read 3 books to get the iPad - he says, "One." He can dress himself and has made great strides using the potty.




My buddy's maturity level has grown so much. I know that we will get past the not so great place his is now... and find some new hurdle to overcome.

I saw this awesome T-shirt recently. It said, "Some people only dream of meeting their biggest inspirations. I raised mine."

How true.


A few of my favorite pictures of the girls so they don't feel left out.

change

Not so great days can really stink but they seem to lead to positive change. Sometimes I need a kick in the pants to get my Mama Bear in full swing mode. I've decided that if my buddy learns nothing more this year than to identify when he is feeling overwhelmed, ask for a break and never enter full meltdown mode - than we have had a successful year. 

If his one teacher can't seem to understand that my buddy not hating school is more important than AB patterns, she will no longer be his teacher. I have given her more than enough chances to change how she sees him and handles him. 

Things will get better. Now I just need to figure out what I want my buddy to do this summer. It's such a dilemma. I want to push him - but just enough. He does the extended year program that the school has but I think he might need more. There are summer camps that my buddy can attend for a couple of hours with a para, but if he hates it and doesn't participate, then it's not really worth it. Where's that darn crystal ball to see into the future???

I do have some concrete parenting advice. Skip buying toys and just head to Target for paper goods. 

Oh and my other advice - if life gets you down, put on your fanciest dress and dance in the sunlight.

not so great

My buddy has had a series of not so great days at school. Not so great as in emails saying they had to physically restrain him because he was hurting himself and others around him. Not so great as in a call so he can talk to me on the phone and stop crying. Not so great as in when he finally calmed down after one restraint and they brought him his communication book so he could choose what he wanted to do, he pointed to the 'backpack' picture and said, "home."

I'm a nurturer by nature. These stories make me want to pick him up from school and snuggle him in my arms all afternoon. I'm better with a hug than with a "buck up buddy." I know that there have been a lot of changes at school plus the time change. It's all it takes to throw him off. He also sneezed a ton after school which usually indicates that he is getting sick. (Perfect timing because he's actually been healthy for 3 whole days.) Plus the moon is in retrograde and all those other excuses I use.

I don't know why he behaves the way he does. I assume it is extremely frustrating to lack the ability to communicate with those around you. Plus he just wants to do his own thing. Change is not his friend.

I asked one of his teachers today about the search for a new para. She said it was going slow because they are looking for the right person who they think can handle him. Then she said that unfortunately people talk and word has spread that my buddy isn't the easiest to deal with. Now, I appreciate that I am an easy person to talk to and she is being honest with me, but I did not need to hear that coming out of the mouth of a professional that works with my child.

I say at least daily how hard my buddy can be. But I don't want to hear his teacher say it. It's like making fun of your brother - fine when you do it, but as soon as the words come out of someone else's mouth, you beat them up with your Care Bears lunchbox.

Some days I marvel at just how far my buddy has come. There are so many things he can do and a level of maturity that I never thought he would reach. But other days it seems like he still has so far to go.

help

I'm not good at asking for help. I have no idea why. I love helping other people and I've never once thought less of someone because they needed help. Yet I find myself only asking for help in the most extreme circumstances... like last week.

Just as we pulled into the parking space at school, big sis (in a panicked tone) let me know that rara was throwing up. I grabbed my travel cup and tore around the car dumping the contents on the way. Once things had calmed down, I surveyed my surroundings. I was standing in an ankle deep puddle of ice water. Big sis had crawled through the front seat and out of the car as fast as possible (she gets that from me) and was standing on the sidewalk in 10 degree weather. Rara was a mess. Then there was my buddy. Sitting very patiently waiting for me to get him out of his seat. Unfortunately, my buddy can't handle walking safely into school and to his classroom on his own. I was in a pickle and needed help. I decided to abandon rara in the car (for less than a minute and I could see her the whole time) and walk the kids to the principal, who stands out front. After a quick explanation, he was more than happy to help.

On a normal day, I believe I can do it all ... and for the most part I do. But wouldn't it be nice not to have to spread myself so thin? Hire a babysitter and get a pedicure. See a movie. Browse the bookstore. Logically I know the kids and I would both benefit. So, really, what's my problem?

I know my buddy isn't easy and not just anyone can keep him safe and happy. The kids are my life. If I had a job, I wouldn't ask for help to do it properly, so why should I ask for help with my kids?

But what it really comes down to is asking for help gives me a headache. The stress of asking someone to lend me a hand is worse than just doing everything myself. You can't fight the introvert that lurks inside of you.

I find plenty of time to do things for myself... just with kids around. So I'll continue my hermit ways... at least until Saturday when the husband is dragging me out of the house for the day. Then I'll happily burrow back into my home surrounded by my family.

one person

I just found out today that my buddy's para will be starting a new job after next week. She is amazing and deserves to have a great job, but oh how we will miss her. The school tried in the beginning of the year to have another para take over half the day so my buddy didn't get to used to one person. My buddy was having none of it. His para is magical with him.

I love how just one person can make a difference. When my buddy sees her, his whole face lights up. He shouts her name and runs into her arms. I'm sure it will be a rough transition for him, but his life will be full of rough transition. I feel lucky that my buddy had her by his side for the last year and a half.

Everyone's been sick around here and the husband has been travelling almost the whole month. My parents were great and came to help out, but nights are all me. So I'm a bit tired and having a hard time finishing thoughts so I'll let some pictures do the talking for me.


Mr. Congestion turned into a sinus infection.


When GramPa first came we enjoyed a few healthy days.



The pure joy of playing with something that is usually off limits.


"Let me in - it's freezing out here."


Enjoying the few days that Daddy was home.


I want to bottle the cuteness.


What sick days look like. Messy. Lots of screen time.

anticipation

I was never one who enjoyed the anticipation of a big event. It leaves me feeling stressed. I much prefer the day after the big event when we just go back to living our lives. No pressure. No big expectations.

Life with my buddy has a lot more anticipation than I ever expected. There's all the 'when will he' questions. When will he walk, talk, potty train, etc? So many milestones that we measure our children against. It takes some kids longer to reach these milestones so the anticipation just builds as does the pressure.

There are countless little things to anticipate daily - you never know if it's going to be a good or a bad day. Will the school call today? Will my buddy do what he needs to or will we have to battle? How long can he play with his sisters before someone is in tears?

I've never once concerned myself with what the girls' long tern future looks like. I'm not worried about college or moving out or getting a job. For some reason with my buddy, I often find myself wondering what his future will be. Will he live with us? Will he be able to cook his own meals? What about a job or relationships? What if I should be doing something more for him now that might be able to really impact his long term future? There are moments where the anticipation feels like it is suffocating me.

Those are the times when I need to step back and watch him smile and know that no matter how it all turns out, I am doing the best I can... and that is all that can be expected of me.

he wins

It's a good thing I'm not a competitive person because my buddy wins. Even when you think you've won, really you haven't. For example, I've been wanting for years to get my buddy to drink water instead of milk. I toy with the idea of going cold turkey on him and suffering the days of pain and misery until he gives in. The other day, I sent him to school with water in his cup for snack time. When I picked him up, they said he didn't eat any of his snack and barely any lunch. All he wanted to do at lunch was drink (the cup of milk). I was so worried that he was coming down with something. Then at dinner he ate a 12 course meal lasting 90 minutes. It was a hunger strike protesting the water in a cup that clearly should have held milk.

Point: my buddy

There are times when you just want my buddy to do what you ask of him but he has decided that he doesn't care to. The natural instinct is to push him and insist that you "listen to me young man" because "I'm the mom and I said so" or maybe "we are running late and this needs to get done". As hard as I push, he pushes back twice as hard. He becomes agitated you become angry. Eventually you can get the outcome that you were looking for, but it comes at such a high price. Winning that feels like losing.

I falsely think I've won the battle of the CPAP machine. But the reality is that my buddy still has a leg up on me because 3-5 times a night he pulls the mask off - waking me up so I head into his room to put it back on him. He gets to see me several times a night and I get to be exhausted. Barely winning. Although his nightly ritual of running into his bed, pulling the covers up and snoring loudly is hysterical. I can imagine him teasing me with a sing-songy, "I'm sleeping. You can't possibly put my mask on when I am asleep." The mask is fun to play with in the daytime when you are supposed to be getting dressed.






My buddy is in a good place now. We've had success on the potty, no struggles with the morning routine and he's had a great week at school. All these things feel like winning, but it's just because my buddy was ready to have some good days. As every special needs mom knows, when things are smooth sailing, it's time to add some bumps to the road. (I may have mixed my metaphors.) Time to push the bar higher - just by little bits. Have him read 3 books instead of 2. Add another potty time to the day. Slip in the fluoride at the end of the day. Push him to clean up more. It's a careful balancing act to keep the harmony without letting him get lazy. I feel like it's important to always expect more yet be on the lookout that you've asked too much.

He even asked to paint one day when he normally would have asked to play the iPad. Now that really feels like winning.