Wednesday, March 28, 2012

Andy is pivoting for toys

Andy has been pivoting for toys today. I'm happy about it, but I can't help but remember how his PT a year and a half ago was trying to get him to do this. It just seemed lost on him back when he was 17 months old. Back at that time, he didn't seem to be interested in anything that was over a foot away. Things had to be right in front of him to catch his interest. Today it clicked for him, and he was going through the motions pretty well. He pivoted both on and off the scooter board in the picture. He really enjoyed being on the scooter board and was pivoting all around the room. This is probably the fifth time he's been on it. He stayed on it for over 30 minutes without trying to roll off. Probably because he was interested in moving around on it this time, and had a better handle on navigating around the room. I also think his vision is much better now, than one year ago, he is starting to want to explore more than what is directly in front of him.

Tuesday, March 27, 2012

Self-feeding is coming along

Andy will be three in one month. Andy will not pick up a piece of food and put it in his mouth. He also will not pick up his water cup on his own. However, if I put his hands on his water cup with straw, he will then lift it off his tray and take a drink. Also, self-feeding with a fork is coming along nicely. If I hand him a fork with food on it, he will grab the fork, and put it into his mouth.

Perhaps Andy thinking, "I would like a drink", then reaching out to grab the cup takes too much brain processing right now. If the cup is in his hands, he will pull it up to his mouth. Several months ago, he would only lower his head a little to get the straw into his mouth while I held it at his mouth. I also had to put his hands on the cup first, then put my hands over his hands, and lift the cup with straw up to his mouth about 1,000 times. This is called hand-over-hand training. It involves muscle memory of a certain action due to performing it over and over again.

For a long time, Andy would not maintain a grasp on his cup more than half a second. He would immediately let it go, and forget about it. The same was true with the fork. He would pick it up, but then immediately drop it. We returned to the fork time and time again, but he just wasn't ready. Recently, I started seeing him grab onto the fork and hold it for 20 seconds or so. I started pressing the issue again with hand-over-hand fork holding. It seemed to be registering this time, around 34 months old. This time it was different, because he was actually attempting to guide the fork into his mouth. He is also maintaining his grasp long enough to get the fork into his mouth. He will either put the fork back on the tray, or throw it on the floor.

Next, we will have to work on getting him to pick up the water, or the fork, off of the tray himself. I expect this will take months as well. Andy finally seemed ready to grab things when handed to him. I just think his brain was ready to do this. I don't really attribute it to any length of occupational therapy, because we've been at this for well over a year and a half now. I honestly just think his brain was ready on its own time.

At first I was surprised that Andy's fine motor is starting to come along more quickly than his gross motor has been. I thought he would need to be near walking, in order to start self-feeding. However, I see small 3-6 month old babies eating crackers in their car seats all the time at mom-to-mom sales. These babies are nowhere near walking, but could be crawling.

I do commonly hear that speech comes along with walking, and it does seem to be the case time and time again. All I can hope for now, is for Andy's brain to be able to handle more and more processing of thoughts, and execution of actions each day. I am also very very grateful that he is putting forks with food on them in his mouth. So, so grateful.

Thursday, March 22, 2012

I don't like my son's future school

I went to visit the school my son is supposed to attend for preschool, and I don't think he will do well there. He is way too hands on. There is NO way that my son is going to just sit around in a stroller and be content all day. He had three fits while we were there visiting. I can't even see taking him there one day a week. The teacher had two helpers and there were eight kids there, all in chairs or standers. It seemed SO overwhelming for the teacher and the helpers.

There is no way I'd feel comfortable leaving Andy there. I already was feeling that I would want to stay with him for a while until I'd be comfortable that he'd be okay at school on his own. Now that I've seen it, I absolutely know I'd have to stay there with him.

There is another school that we can visit, but the teacher does not allow any of the parents to come into the classroom to be with their kids. Unless they were willing to allow me in there as some sort of classroom helper, I wouldn't leave him there either.

My husband and I each have a hard time caring for our son. Putting up with all of his fits of anger and frustration. He's inconsolable to his own mother. There is no way that a stranger who is overwhelmed having to care for other severely impaired children can do it. This all seems insane to even be considering.

I am not that desperate for a break that I am going to just leave him somewhere and hope for the best. I don't see it being productive at all for him, the staff are way too overwhelmed. He just is too helpless. No one puts a 6 month old in school. Why should I be thinking of putting him in there, when he is developmentally as a 6 month old.

If he should start crawling, and cognitively start developing, I could see maybe doing this. For now, the school isn't going to work with him like he needs. They are going to babysit him for a few hours. That's what it seems like to me.

Friday, March 16, 2012

Young woman with Asperger's relates to Andy

A young woman of 23 years says she was just like my son when she was his age. She says she couldn't move around at all until 3.5 years old. She crawled around 3.5 years old, and walked at 4.5 years old. She then started talking around four and a half years old.

She says she could understand what others were saying to her, but couldn't get any words to come out. When she did start talking, she found herself able to talk in full sentences. My sister showed her pictures and video of my son, and she said "that looks exactly like me at his age".

I'll have to keep this in mind for future discussions with physicians. I should probably also have him evaluated for autism when he gets a little older. We're still in the wait and see area right now.

Wednesday, March 14, 2012

Not sure if Andy needs an anti-depressant

It has been so hard to keep Andy from crying lately. I really think he might be getting depressed because he is so helpless. He tries really hard to sit up and cannot. I can see the look on his face. "I wish I could just sit up", is what it looks like he's thinking. Also, crawling seems like it is the furthest thing from his mind. He lays on his stomach, and tries to swim. Flailing his arms like crazy through the air.

His efforts to communicate with us consist of only crying now. He seems SO frustrated, like he doesn't even want to try. He just immediately resorts to crying.

We are going to try and see a new neurologist (thirds a charm), and I am going to talk to his primary doctor about anti-depressants. I just don't know what else to do, he is truly miserable. We can't function as a family like this any more.

Monday, March 12, 2012

Oh, the constant crying and screaming

My son screams and cries a lot. When we are in the car, he does it 80% of the time. Today, driving home from Costco, I had to listen to him scream the whole ten minute ride home. Therapy is the worst, because it is 20-30 minutes depending on traffic. The DVD player only gets him to stop crying some of the time. Usually by the time we get home he's so inconsolable, I feel my only option is to put him in his crib. He usually cools down or falls asleep within 10 minutes.

My four-year old daughter told me today, "mom, I hate when Andy screams all the time!" "Why did you have to have another baby!" I told her that nobody likes it, but we have to deal with it. Not really sure how to answer that one. I've also told her that he can't talk, so his only way to tell us things is by screaming and crying.

We are thinking of going on a trip without Andy, it must sound awful. Our family understands though, and have offered to watch him if we want to get away for a few days. I've tried brushing and compressions, music and singing, DVDs, and having toys in the car. Andy is just Andy. Screaming and crying most of the time to try and get his point across.

Sometimes I think he cries more around me. When either one of his grandmothers watch him, they tell me "oh he was so good, and didn't cry". He must just need a change of scenery more often. I also prefer going shopping without him, because it is SO stressful. I was singing songs to him the whole time we were in Costco to keep him quiet. Other times I just let him cry and try to get my shopping done as fast as I can, and get all kind of stares and disgusted looks from everyone.

Can't wait for this phase to be over. We're long overdue for a break from all the crying.

Sunday, March 11, 2012

Trying to stay positive

Here I am with another day of being thankful for what I have, and trying not to want much more. At 34 months, Andy continues to push his bottom off the floor, but isn't army crawling. However, he is trying to self-feed more and more each day. Also, we are going to stick with speech therapy for now. I talked with his therapist about introducing AAC, alternative augmentative communication, and we are starting out with ipad apps.

The therapist purchased "ispeak button" for her ipad, and I got it for my phone and ipad. This way we can see if Andy will start pushing the button for the word "more".  You can record any message you want, and you will hear it back when you push the button. Since I have an iphone, I can take it anywhere with me, and don't have to have the ipad. 

School is also on the horizon, which I think will be so beneficial for us as a family. Right now, we are working on self-feeding at home, but the school will also work on it twice a day with him. We are also introducing a cup with handles to Andy.

I still have my days where I can't believe I have a three year old that can't walk or talk, but I have come to stop looking at traditional milestones. I think he will eventually do all the things he is supposed to, just in a different realm. I kind of feel like we are a family in a different dimension, like some crazy sci-fi movie. I find myself gravitating more towards people who are accepting of Andy, and just being around them.

We are looking forward to summer and getting outside more. Andy has been extra irritated lately when we stay inside too much. It can be hard to go into public places, because people don't understand why Andy can't walk. Some times, I just don't want to deal with it. But recently, the swim instructor at the pool has a sibling with cerebral palsy, so she is happy to see me bringing Andy into the pool more often. That kind of stuff makes a big difference. I also want to take Gabby to open gym/gymnastics more often, but it will involve me playing on the floor with Andy while she runs around. Again, a lot of questions with all the other parents, but we have to do it for Andy to be happy as well.

We are also thinking about getting a mini-van. I currently drive a sedan, Mazda 6, and it seems a mini-van would be better for our family at this time. Especially the fact that the doors would automatically open for me, while I'm carrying Andy out to the garage. It would be great.

Thursday, March 1, 2012

Revisiting self-feeding

Andy will be three years old in two and a half months. I would love to see him put any kind of food into his mouth. He won't even lick his fingers with yogurt or whipped cream on them, nothing. Lately, we've been seeing him put toys in his mouth, so I thought I should revisit self-feeding.

Every now and then, I try and see if Andy will hold a fork or spoon with my help. I put his hand on it first, but then he usually protests right away and pushes my hand away forcefully. He would also immediately drop the spoon, and not let me bring his hand anywhere near his mouth. Every month I revisit it, and its always the same.

Today, he is grabbing the spoon when I present it to him with food on it. Oatmeal and yogurt have been what we're working with today. He is maintaining the grasp, and letting me put my hand over his hand without resistance. He is also letting me lead the spoon up to his mouth, then opening his mouth and eating the bite. This is HUGE. He always pushes the spoon away in anger, and refuses to eat it.

I told him how proud I am of him for eating with a spoon. He seemed to like the praise. I had him eat almost his whole bowl of oatmeal this way, and later for lunch his yogurt. Constant repetition is what the therapists always say. So, I've got to start doing this more and more. I always see regression with him too, so I am awaiting that resistance again.

He also picked up a large cracker off his tray and brought it to his mouth, which was SO awesome to see. I have been waiting so long for this. I finally feel like, wow, maybe he will actually start to grow out of this infant phase! Thank God, I can't wait.