Monday, July 18, 2011

On having another child

We had our second child, Rylie, before Stewie was officially diagnosed. I had just found out I was pregnant with her when we had our first evaluation for his speech delay. We received the autism diagnosis a year later, when she was around 5 months old. Now, she is nearly a year old. I have been struggling with the decision to have another child. We don't know if Rylie is autistic, although I am leaning towards the notion that she's not. Only time will tell. If we were to start trying again, it will probably be in another year, when she turns 2. I think one of the biggest deciding factors will be how much Stewie has developed (he's on a great path right now) and whether or not Rylie shows any signs of delays or autism. I think if Stewie has a setback or if Rylie needs extra help, we may be done having children. Raising Stewie has been fun and difficult. As much as we want a third (and last) child, I don't know if we could handle it if there are too many factors involved.

Stewie does pretty well with Rylie. He was very gentle with her after she was born. A couple months later, he is getting impatient that she's not able to rough house with her, and he's starting to be more aggressive with her. I don't think it's a mean thing, just that he wants to play and she's just not there yet. We have to keep an eye on him to help ensure that he doesn't push her or be too rough with her when he gets jealous or frustrated. She's a tough kid, but there's only so much she can take. I look forward to the day they can play together and she is a little better able to defend herself, although I think that it will open another can of worms.

On the other hand, having Rylie has really helped Stewie with other behaviors. He is getting better at sharing his toys. There are only one or two toys that we don't allow her to play with. Instead of snatching his wood train puzzle pieces out of her hands, he gets upset and makes us do it. When Rylie is upset, Stewie will bring her a bottle or a toy to calm her down. When he is eating and she's making noise, he'll share some of his food with her, in hopes of making her happy and quiet.

My kids have been the highlight of my life (after my husband, of course), and I just think about the joy a third child will bring. Even if Rylie or baby #3 were to need extra help, I think we'd be able to handle it, just because the joys outweigh the hardships. We'll probably wait until Stewie is pottytrained, which is a process in progress. And hopefully the rumors that girls potty train faster than boys will hold true. Only time will tell. Until then, we'll enjoy our two wonderful children and be thankful that BC has not failed us yet.

Thursday, July 14, 2011


Lately, Stewie has been having increased tantrums. I'm not sure what caused it. One night he had an epic tantrum (epic for us, anyway). He flopped on the floor and started screaming, crying, kicking and hitting. Then he'd get up on his dad's recliner chair and start it all over, eventually flopping to the floor. We didn't get near him because he was all over the place and not easily comforted or contained.

More recently, he's been into changing shirts. He was on shirt #3 by naptime, which is around noon. The first shirt I put on him had a heart, which he pointed out (or rather, he just labeled it). When I went to put it on him, he freaked out. He smacked my hand so hard that it was still stinging minutes later. With his moods, you never know what's going to set him off. If you let him try to do something on his own, it's hit or miss. He gets mad if you put his shirt right side up (instead of letting him stick his head through the top instead of the bottom). He gets mad if he needs help and you're not giving it fast enough. Or if he doesn't like how you're helping.

It is maddening. And he gets so mad, he can't speak. He basically shuts down. The tantrums end after a while and all he'll say about the incident is that he was crying. Yeah, you sure were. And we never know what set it off. They take a lot of energy for him, and they take a lot of energy out of us. If we knew what caused his meltdowns, we would do what we could to prevent them. I just wonder if other parents have to deal with tantrums/meltdowns which are triggered like light switches. Any tips in coping with that would be appreciated.

Wednesday, July 13, 2011

Self injury

For just about my whole life, I've suffered from an OCD related form of self injury: dermatillomania. Basically, I can't help but pick at my skin. One of the biggest fears I had in having my kids is that they would have this problem, too. It still weighs heavily on  my mind. I am careful to monitor myself when the kids are around so I don't do it when they can see. It's difficult.

With that being said, Stewie has displayed various traits of self injury in his short life span. For a long time, he would scratch at his skin (nothing there to scratch at, as far as I know) and cause wounds to appear. Fortunately, he didn't mess with them after they were there, outside of just scratching in general. He would scratch mostly at his arms and legs, and sometimes his back, butt, and stomach.

We had to explain to his preschool teachers that the scratching is likely caused by anxiety and not other factors such as laundry detergent or allergens. They still pulled me aside after seeing the physical parts. They realized it wasn't child abuse when they saw him scratching on his own, which was especially bad when he first started school. He would scratch when he was mad or frustrated or if he wanted to get a rise out of us. I admit that it worked. It wasn't something we could just ignore. I am happy to say that since we moved out of our previous living situation, he has ceased with the scratching. I have tried experimenting with the laundry detergent and fabric softener to see if he would break out and/or start itching, and he hasn't. So I think the scratching was a result of stress and anxiety.

These days, he bangs his head on things. It's frustrating for us to see. He lays on his back on the hardwood floors and hits the back of his head. Or if he wants to do it in the living room, he'll go to where the front door is and hit his head on the uncarpeted floor there, or on the carpeted stairs. He has given himself bumps and bruises on his forehead, which makes me feel like a bad parent because I can only imagine what other people think, and I wait for some child protection agency to come and investigate. I would only hope that they know he's been diagnosed with autism and that they can determine that we don't hurt him. It's stressful to be constantly concerned about what others think, yet I cannot stop.

I just don't know what to do about his head banging. It bothers me to see him do it, and I have to intervene when he's going to do it on the walls (which is rare, thankfully) because I don't want him disturbing the neighbors. I'm open to suggestion.

Sunday, July 10, 2011

Post Secret

I feel like this post card could have been written by my husband:


This post card falls in line with my struggles on the line of autism. This is one of the things that wants me to keep his diagnosis quiet, because I don't want someone to look at him as a diagnosis. I want them to see the bright, sweet, and wonderful little boy whom we love deeply and who brings happiness into our lives.

He is not affected by autism as strongly as other kids are, and revealing his diagnosis to people seems to make some think that the topic is open for discussion, and it often leads to them labeling him as "the autistic kid" instead of Stewie, the boy who loves trains, motorcycles, and his little sister.

Wednesday, July 6, 2011

The beginning of our path

When Stewie was around 20 months old, I noticed he had a language delay. His cousin, who is about two months older than Stewie, was much more advanced when it came to language. After 18 months old, we were still anticipating his needs and just following a schedule. Stewie didn't need to tell us he was hungry or thirsty because he was offered food and drink pretty regularly. If he got upset, we figured he was hungry, thirsty, tired, or needed to be changed. Stewie would label items, but not consistently and he would lose words. One of those words was light. He would point out the lights for a long time, then he gradually stopped doing it. He didn't use echolalia as much as he should have.

Just before he turned two, I took him in to get evaluated by our county's early childhood intervention services. They agreed that he had some major delays (more than 50% in the language area) and we qualified for services. For a year, we had a general teacher who came out to help round out his skills. Fortunately, he is not behind in motor development, so we focused on speech and play. At the beginning of the sessions, I was concerned that Stewie was too lenient in his behavior. By that, he would not get upset if someone (like his cousin) came up and took the toy he was playing with. In one way, it was nice because it prevented conflicts, but I was concerned that people would take advantage of his sweet nature. I don't know how much of his lack of reactions was due to his nature, his desire to fit in, or what. Now, at 3.5, he gets upset when his sister takes his prized possessions, and I think he has a normal reaction.

We had a speech therapist come out after a few months, in addition to the teacher. We saw progress from their visits. They also gave me tools to help encourage Stewie on our own. They are also the first two who suggested that Stewie may be autistic. A few months before his third birthday, we had him professional evaluated. Their diagnosis is that he is moderately autistic. We had another evaluation through the county, in which they took the professional evaluation into consideration. He qualified for preschool, which he started a week before his birthday.

Preschool has been good for him. He enjoys interacting with other children, and the school provides activities that we haven't or aren't able to. He gets the inner peer pressure, such as seeing other children who are potty trained and he decides he wants to be potty trained, too. His language skills have blossomed, too. In the past few months, we have noticed he's experienced a language explosion. He added a ton of words to his vocabulary, and he's speaking in 3-4 word sentences. They are not random sentences, but ones we practice with him. He's starting to ask for more things, such as things he wants. It's wonderful to hear him ask "more water please" and he's very polite with his requests, for the most part. I'm not sure who taught him "get up," but when we refuse to budge, or we give him a hint, he usually asks again by saying "get up, please" and we comply with his request. He still has trouble with syntax, but it's not a huge issue.

It's awesome to hear him ask for food, drinks, or other things. He has started substituting words in sentences, such as saying "I love motorcycles" instead of "I love (Mom, Dad, Rylie)." His favorite requests are going to the park to play, playing birds (on my phone), or playing with his toys. He has his routines, things which he asks for either every day, or in certain situations. Every time we go to the car, he wants to go to the park. When we are near our local grocery store chain, he wants to go inside and ride the mechanical horses they have. He has also started practicing echolalia, and for the most part, that's great. Now we have to start watching our language. He is much more willing to repeat new words and short sentences, where in the past he would clam up (especially if we were around other people). We have to prompt him less often than we did in the past, too. He still enjoys pointing out things he knows the words to. Strangers are starting to understand those words, and he enjoys that.

So there it is... a jumble of how we started on our path of the diagnosis of autism.

Tuesday, July 5, 2011

The fine line

I've been struggling with where to draw the line of autism. By that, I mean how much should I say "he's acting like that because he's autistic" or "he doesn't listen because he's autistic" and how much of that is the reality of having a three year old? It seems that unless you have a vested interest in autism, you don't really know much about it. Someone who doesn't know might think that all autistic kids are unreachable and they sit somewhere, rocking themselves, and no one can communicate with them. I still think of myself as being uneducated and I think that's why I struggle with his behavior.

I don't want to be one of those people who blames all the "bad" behavior on autism. Certain elements may play into it, but not all the time. And I don't want to say "oh, he's autistic" when he's doing something, because the whole world doesn't need to know, and I don't want to paint a bad picture of autism, especially to someone who doesn't need to know, who won't understand, or those who won't see him again. Sometimes I feel that if I explain that he's autistic, they won't believe me because of their preconceived notions of what autism entails, or they'll simply think I'm a bad parent who is reasoning away their child's behavior.

We were at a 4th of July celebration over the weekend. We took Stewie on some of the carnival kiddie rides. There was one he went on alone - the swings. He kept sliding himself forward on the swing, and even caused the ride to be interrupted for a minute so he could be readjusted. I kept calling for him to sit back, but he wouldn't. I wanted to apologize and say that he's autistic, but what good would that have done? The ride operator wouldn't have cared and would probably start thinking all kids who couldn't sit properly on the ride were autistic. Would that have done any good? No, and we are probably never going to see that again, and if we did, it's not like he'll recognize us or Stu.

Stewie also has aggressive behavior, which. from what I've read, is common in autistic children. We are fortunate that he doesn't exhibit this behavior toward other children or people. It's just directed mostly at me, sometimes at his sister, and occasionally at his father. No one at the grocery store needs to know, but I figure the mom's group we do activities with should know. Even with women who I am pretty comfortable with, I still feel alone and unsure of how much to disclose to them. I have revealed that he has been diagnosed with autism, but I haven't really expanded on it. Have they noticed that he is different? That he doesn't play and interact with the other kids as well as the others? That he has a speech delay? I am still very sensitive about the subject , but I want to talk about it. There's that fine line again.

There is a new mom's group we're meeting up with soon. It's for other parents of autistic kids. I'm actually really excited for it. I kind of want to see how Stewie 'compares' to the other kids, and I am happy that I get a chance to connect with other parents. It's not easy and it's nice to relate to people who are experiencing the same things with their kids for the same reason. There is a monthly meeting for parents of autistic children which I am looking forward to going to. We were not able to go last time, which would have been the first time. I just want to go and hear the stories of others, and share a little bit of our story. I'm pretty sure those parents can relate to the line and can maybe shed some light on how they walk the line of autism and parenting, whether they are successful or not.

Sunday, June 19, 2011


A friend recently told me that parents with autistic kids are in denial for a period of time. For me, it was about six months. When my son, Stewart, was about 20 months old, I noticed he had a speech delay. I went to the county for help, and they did an assessment. He was delayed enough that we qualified for services. A general skills teacher came to "play" starting in February, shortly after he turned two. After a few months, we brought in a speech pathologist. They both believed that Stewie had autistic tendencies. In December, we had a developmental evaluation and received a "moderately autistic" diagnosis. My husband and I were in disbelief. We had a second county evaluation done in January, to see if he would qualify for preschool. He did. They also agreed with the autistic diagnosis. Right as he turned three, Stewie started preschool. He loved going on the bus, and enjoyed going to school, too. Two months later, we had a parent teacher conference with his teacher, who agreed that Stewie was autistic.

What a word - autistic. When I think of it, I do not think of my son. I think of those poor souls who are much more severely affected by it. How could my son be autistic? He is a sweet, smart kid. He has a good heart, even if he can be ornery at times. He likes to be around people, and he tries to engage others in what he finds interesting. He does well with adults because they focus on what he is interested in and talk to him about it to his heart's content. Adults don't require as much back-and-forth as little kids do. As much as my son loves playing with other kids, he can take it or leave it. For the longest time, it didn't bother him if a kid came up and took the toy he was interested in. He's starting to get over that now, but I was concerned because I didn't want him to be bullied or taken advantage of because of his cooperative nature.

It's only been in the last few weeks that I have been able to accept his autism diagnosis. I know better than to compare him to other kids, but I can't help it. I know he's different, but I still love him for it. I just want other parents to know why he acts differently when we're at playgroups and he's not participating in a similar manner as the other kids. Or why he doesn't speak as clearly and coherently as his friends who are the same age. Of course, I don't want people to discount him because of his autism. He is capable of so much, and I am careful to not let him get away with things he shouldn't because of his autism. It's possible I push him a little more, just because he is really smart and when he puts his mind to things, he figures it out and gets a sense of pride and accomplishment.

I think my husband is still in denial. I am not going to push him to come out of it. I am just going to talk about my feelings here, mention blurbs on facebook, get more knowledgeable about autism and education around it, and get a support system in place. His mother is already supportive, which is both (pleasantly) surprising and comforting. This blog is for me and my family, but I hope others find enjoyment, solidarity, and useful information here in my future posts.