Since I first began blogging, I have been talking mostly about my experiences with autism; but recently I was reminded that autism affects everyone in your child's life in different ways. Many parents who have children with special needs will tell you that one of the worst things about this experience is the judgement you recieve about your parenting skills. I have been on the wrong end of some strange looks and biting remarks about the choices I have made for John. There are always going to be those who just don't want to believe it when something's wrong, or believe that they themselves have better ways of handling problems when they arise. These people may not intend to be hurtful, but as is often the case, good intentions do not always bring about positive results.
Not long ago I was discussing John's situation with my sister Erin, we have become very close over the years despite our seven year age difference. Erin was one of those who believed whole heartedly that I was crazy in the beginning of this process and never missed an opportunity to tell me that she thought John was fine. Erin recently admitted to me that she began noticing John's symptoms long before she let on, for fear she would hurt my feelings and partially because of her own denial. However, since John's diagnosis she has been one of John's biggest supporters and has been extremely helpful to us both.
Erin is a twenty-six year old college graduate with a full time job. She has no children and professes no desire to have any of her own, so instead she dotes on her niece and nephew. I asked Erin to grant me an interview in the hopes of spreading awareness about the affects autism has on extended family members and to give her perspective on what it has been like to watch her nephew go through this long and difficult process.
John's Mom: How did you feel when Mike and I told you about the changes in John and started having him screened for autism?
Erin: Oh, I thought you were nuts. I couldn't believe you were actually going through with it. I just chalked it up to paranoid first time parents.
John's Mom: When was the first time you noticed something about John that seemed different?
Erin: About three months or so after you first started having him checked. Right after you took his binkie from him.
John's Mom: You mean his pacifier?
Erin: Yes, his pacifier. I noticed he was doing the arm flapping thing, which you had mentioned before but I never saw him do it. Plus, he seemed like he lost focus or something. But I just figured he was going through withdraw from losing his pacifier.
John's Mom: When did you first really start to believe that John might actually have autism and that Mike and I weren't crazy?
Erin: Well, it took me a while. Because you guys kept worrying about John not being able to talk and I always thought that he didn't talk because he always had this pacifier in his mouth. I just assumed that once the pacifier was gone he would start saying more words. Once that didn't happen, I started really watching him for other signs.
John's Mom: What other signs did you see?
Erin: Obviously, I saw the arm flapping and I did notice that he stopped playing with some of the toys I had gotten him, that he used to love but suddenly he had no interest in them. Plus, if you remember we were all waiting to find out about his hearing because we all noticed John didn't answer to his name.
John's Mom: Right.
Erin: So I saw little by little that there were things that John did that were different. But it wasn't until I spent time with other children John's age who were doing things that John wasn't, that I realized he was having real issues. When I started spending time with some of my friends children,
I noticed that they were talking alot, playing with their toys, and seemed more alert than John did. That's when I got worried.
John's Mom: How did you start to feel when you saw these things and knew I was right?
Erin: I was really frustrated. I remember being a little angry with you and Mike and I was like "Why can't you just make him do these things?". I didn't understand why you couldn't teach him yourselves, you know. So I went out and started buying him all of those things, remember?
John's Mom: Like the books...
Erin: And the flash cards and the magnadoodle and stuff. Yeah. I was convinced that if we all really stopped and took the extra time to teach John about letters and shapes he would start talking.
John's Mom: But I was already doing those things.
Erin: Yes, but I wasn't sure if you were doing them right.
John's Mom: You mean you didn't trust that we were doing them right?
Erin: No, I thought you were trying your hardest, but maybe you didn't have the right equipment.
John's Mom: Oh, I see.So when you started to see these changes, did you mention it to other people?
Erin: Honestly, yes, to a few people. I told my boss and his wife and a few friends. Mostly, I wanted to talk to other people who had young children around to see what they thought.
John's Mom: What did they say about it?
Erin: They thought I was as crazy as you were. They had all met John and thought he seemed fine. But none of them had spent a lot of time with him, so I didn't really trust their opinions.
John's Mom: You have some trust issues don't you?
Erin: (Laughing) You should know.
John's Mom: So did you start to see a little of what I was going through?
Erin: Yeah, I did actually. Everytime I talked about it, people would just kind of nod and smile but I could tell they didn't totally believe that I was right.
John's Mom: How did that make you feel?
Erin: Probably the same way you did. I wanted to punch them all in their smug faces. (Laughing) No, I did get pretty defensive though. I mostly just walked away, because I figured they don't know what their talking about. Then I get mad again because I know their probably thinking the same thing about me. So eventually, I just stopped talking about it and when anyone would ask me about John, I wouldn't go into detail. I just told them he was doing fine.
John's Mom: What was it like for you when we told you that John had been officially diagnosed with Autism?
Erin: I was sad. I remember thinking that I hoped John could still have a normal life and worrying that he wouldn't. And I remember thinking that I hope John could at least learn how to talk or communicate somehow because I had read that some children with autism never do.
John's Mom: Right, some don't.
Erin: But I mean, John is still a toddler, so I don't think we should panic about that yet. There's still a good chance that he'll talk when he's ready.
John's Mom: Yes, absolutley. I will never give up hope that he will talk and that he will still have a great future.
John's Mom: If there was one thing that you could tell the world about autism, or to other Aunts who are watching loved ones go through this process, what would it be?
Erin: I would want people to know that autism is a real condition that affects a lot of children in this country. It's not caused by bad parenting or anything that can be prevented. I would also want them to know that children with autism are still people. They still have feelings and emotions and it is not OK to mock them or bully them. And as for the Aunts of the world who are witnessing what I just saw first hand, they need to be more openminded. They need to be less jusdgemental about the parents involved and try to see how hard it is for them just to admit that something is wrong with their child. I would also tell them to just use their heads when it comes to the parents and use their hearts when it comes to the children and everyone will come through this OK.John's Mom: Thank's for taking part in autism awareness month.
Erin: No problem. Whatever I can do to help, I'm there.
John's Mom: Thank you, so much for doing this. I really appreciate it.