Monday, May 24, 2010

Big strides lately

So much to talk about lately... 1DS has done so many things. He put his own shirt on by himself, no help. He said "I love you mama," which was the only thing I ever really wanted to hear him say. He says thank you every time I give him what he asks for. He shares toys very nicely with everyone who is NOT his own brother LOL. He's done surprisingly well with the transition from preschool to no preschool for the summer. He asks to go to preschool every day, and I tell him preschool is all done until fall. The other day I heard him talking to himself "Go preschool, no, preschool all done." He asks for his friends from therapy in the afternoons, after therapy is over for the day. He answers questions more than yes and no. I can ask him what he wants to eat without giving him any choice and he will tell me. The other day I finally got him to acknowledge and use his thumbs. The sign for mama is to put your thumb to your chin, and for daddy is to put your thumb to your forehead. He has ALWAYS used his index finger to sign mama and daddy. So the other day he finally used his thumb, and then once he had it down, he asked me how to sign grammy and grandpa. Aside from only ever wanting the toys that his brother has, he's been doing just amazing.

Saturday, April 24, 2010

People say to me all the time, "I don't know how you do it." Not the least frequent of whom is my own husband. I've never really known how to respond to this. I just do it. And then it came to me. Yes, we have plenty of bad days, and bad times. And when it's bad, it's pretty bad. But the good days are so good, that it makes it easier to get through the tough times. The euphoric rush I feel when he does something for the first times is 100x stronger than despair of the worst times.

He answers questions now, which has made a tremendous difference in all of our lives. Today he was playing downstairs while I was upstairs cleaning. He came upstairs and said "Mama, I need help please." Keep in mind that eight months ago he couldn't talk at ALL. This is a huge accomplishment in itself. I asked what he needed and the best he could do was "downstairs," so I went down with him. He wanted me to carry his Little People garage upstairs for him, and he pointed to it and said "Mama take upstairs please."

We went to Target today and I bought him a car, and we made it through the entire store with no tears or shouting whatsoever. Later we went to WalMart and I explained to him that we were not buying any toys and he didn't even whine. Again we made it through the entire shopping trip, very busy on a Saturday evening, with zero tears. On the way out the greeter gave the boys stickers and she asked him to smile at her. I took a deep breath and prepared for the inevitable screaming and hurt feelings. He doesn't like me to talk to anyone, he gets always gets upset. So I told her "He's autistic so he isn't even going to make eye contact with you," but I did at least get him to say thank you. Turns out she has two autistic neices and a bunch of connections to advocacy groups and parent groups. She wrote down a bunch of information for me and gave me her phone number. She was a little chatty and 1DS never got upset at all. The little guy got a little impatient, but the big boy was calm and quiet and cool. Not an easy feat for him.

Days like today are the reason I can make it through the mud and the blood and the tears and the head smashing. This is my life and I love my kids with everything I have, even when I want to take my earplugs and lock myself in the bathroom for an hour. I wouldn't have it any other way.

Wednesday, April 21, 2010

1DS asked for bbq sauce with his chicken strips today, so I gave him some. Now he is walking around fussing, trying to wipe the bbq sauce off his tongue.

Thursday, April 15, 2010

After almost two weeks of spring break for 1DS, preschool is back in session this week. It's nice to be getting back in to the swing of things. He likes preschool, and he's usually excited to go. But he melts down every single day when I pick him up. He never says he doesn't want to go, and the teachers aides always tell me he's fine until he sees me. I don't know why he gets so upset, other than it's a transition, but he doesn't take any other transitions so badly. He doesn't cry at all when I drop him off.

I made pancakes and sausages for the boys for dinner tonight. 1DS wouldn't try his food, so I pried his mouth open and put a piece of pancake in. Lo and behold, he loved it! He ate all three of his (small) pancakes. He didn't want to try the sausage, and since he was eating the pancakes at least, I didn't force the issue. I knew he wouldn't like the sausage but I wanted him to try it anyway.... but if I had forced him to taste it, as odd as this sounds, he would have held it against the pancakes and stopped eating them. This is another one of those things that I do not understand, but I figured it out and we work with it.

He has started to sing lately. That's fun. Every time he does something for the first time that normal kids pick up on their own, I want to jump up and down for joy. Having had one c-section and one VBAC however, I don't do a whole lot of jumping. ;-) Anyway. It is absolutely amazing to watch him sing along. It's something I really didn't think I would ever see. As miserable as autism is, it definitely gives a parent the opportunity to savor every little accomplishment. Things that are taken as a given in neurotypical kids make our hearts dance for joy. I wouldn't with autism on anyone, but it isn't all doom and gloom. The bad makes the good seem just that much better I guess is what I am trying to say.

Thursday, April 8, 2010

We went to the park today, and it was a LOT of fun. But it's always a huge fight when it's time to leave. The whole way home he cried "Different home! Different home!" It was very upsetting for me. We spent last weekend at Grandma and Grandpa's and it was an amazing time. The boys were great and had a lot of fun. But again, when it was time to go home it was an absolute nightmare. When I picked him up from therapy on Tuesday he was crying to go to Grandma's, and crying her dogs names. He fell asleep in the car and I let him sleep a while. When he woke up, he was really angry that we were at home, not Grandma's. I think he thought since he slept in the car that when he woke up we'd be there. He understands that "we can't go to Grandma's" but he does not understand why and he gets so angry about it. It's so hard. :-(
Yesterday I had a half hour argument with 1DS, which consisted of:

Do you want to go to WalMart?
Yes WalMart!
Then you have to put pants on.
No pants!

Wednesday, March 31, 2010

Today has been one of those days. I had a great morning at work. I love my job. I even got to hold my boss's newborn for a while. I came home, DH went to work, and it was business as usual. I ordered a pizza for lunch for the three of us and everyone was happy. Then we went to play out in the yard. I was raking and cleaning up and 2DS (18mo) was "helping" me with his own rake. 1DS was back by the fence, he's a big boy, he can play by himself for a bit. Then he started to cry very hard. He cut and bruised two of his fingers, but I wasn't looking at him when it happened and I don't know what happened. He cried for an hour and a half. His crying set off 2DS. I had to give 1DS his Leapster and a glass of milk and put him in his room for 15 minutes so I could regroup. He just kept crying and couldn't or wouldn't tell me what I could do. I ascertained that his fingers still work, and he didn't scream any louder when I squeezed the sore ones than when I squeezed the other fingers, so nothing is broken. I got down to nearly begging him to tell me what I could do to make it better. I told him "Use your words and tell me what you want and I will get it for you." I was willing to do just about anything to get him to stop crying. Then he hit on Brown Bear Brown Bear What Do You See, and everything was OK. I started reading it to him and then he took over and was reading it to me. I don't know what happened, I don't know if Brown Bear is what he wanted all along, or if he just saw it and decided not to cry anymore. I was fighting tears myself because both boys were so upset, and then he started reading Brown Bear to me and it was just like a fresh spring rain that washes away all the snow. Everything was right with the world again.

Saturday, March 27, 2010

Sometimes I think about what life would be like if we didn't know 1DS has autism. I think about all the kids like him who are undiagnosed and not getting the services they need. It makes me so sad.

I am a very hands-on mom. I breastfeed, babywear, make my own baby food, and so on. I enjoy being involved in all facets of my kids lives. So when it was suggested that my not yet two year old needed help that I couldn't provide, that was a big pill to swallow. I did not want to accept that my toddler needed more than I had to offer. He was still just a baby, and to me all a baby needs are his loving, caring, involved parents and grandparents. I didn't want him to need anyone else. Even though he was difficult, he was never a burden to me and of course he still is not. I don't ever wake up in the morning and think 'oh no, another day with the kids all day, what am I going to do?' I get my me-time at night when they are in bed, and every now and then I leave them with daddy to go shopping. How could a stranger, ESPECIALLY a childless stranger, possibly know what's best for my son better than I did?

But then I also realized that I couldn't just bury my head in the sand and pretend the A word didn't exist. I couldn't pretend to know enough about speech and occupational therapy to handle it myself. In order to do what was best for my son, I had to swallow my pride and allow people to help us. I had to admit that I could not do it myself. But I did it for him. It's not about me. It's not about me being a bad parent, it's not about how many stories I read to him, or how I would buy him grapes to eat in the grocery store so that he wouldn't scream while I was grocery shopping. It's about HIM. It's about making his life easier. It's about making him happy. It's about teaching him how to enjoy the beautiful gift of life he has been given. How could anyone turn a blind eye to these things?

I don't know how, but I do know it happens all the time. There are so many "difficult" and "naughty" and "shy" and "fussy" and "high maintenance" kids who could be making more of their lives if their parents could swallow their own pride. I know it isn't easy, but once you do it, it pays off in a big hurry.

Sunday, March 21, 2010

This is how it works with Autism.... This morning 1DS didn't want to pick out a shirt, and then he threw a fit when I picked one. He even hit at me. A couple hours later, he's happily trotting away from me with a bowl of chips saying "Fank oo Mama." We have so many ups and down, often within the same day.

Saturday, March 20, 2010

He pedaled! He pedaled his big wheel!!! I've been trying to teach him to pedal for almost a year and he finally did it on his own!!! He also said today "What does cat say? Meow! Great job. Can I get high five?" and then came and high fived me! It's been an incredible day. We didn't make it to Wash Pav, and he had a meltdown at WalMart when I wouldn't buy him a train or a car. But with everything that has come after it was totally worth one tantrum. I still don't believe it, he really actually pedaled!
1DS has discovered the letter S and how to use it at the end of a word to make it plural. When counting he used to say - one cup, two cup, three cup, etc. Now he is saying - one cup, two cups, three cups, etc. We've been practicing sssssssss, making the sound a lot. It's so much fun to watch him learn and discover. I enjoy the smallest things that most parents probably take completely for granted.


We are going to the National Agriculture Day at Washington Pavillion today. I think 1DS will really like it, but it's going to be me alone with both boys. If it goes badly, it's going to be pretty bad.