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Old 03-26-2013, 02:49 PM   #1
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Intimidated by the Process of Getting a Diagnosis

I've always known something was different about my oldest boy, since he was really little. I ignored all the signs best I could because I didn't want my kid labeled and all of that jazz. I thought I'd be able to handle it all without a problem because that's the kind of hippie family we are. I think a part of it was I just didn't want to hear that my son has got challenges that other kids have. The idea of my child not being "normal" really kind of scares me. I don't want anyone judging me or him for it. I don't want to hear how we can't possibly keep homeschooling/unschooling because of it and everything else.

Well, I've really just kind of had it. I need help of some kind. I've had people telling me for years (since my oldest son was about a year old) that I should have my son tested for Aspergers or some other autism spectrum disorder. As he's gotten older I've had more and more reasons for concern. He's 6 now and the things we've been noticing have just become more and more obvious. I can't say that he's obviously on the autism spectrum, but there's obviously something going on with him, and it's starting to become challenging for the whole family. It's time to do something.

My boy is a really awesome kid, for the most part, but he's given us a lot of challenges. The first and most obvious one was the way he lives in his own little world. He's just not all there, in a way. He spends a good deal of time playing by himself instead of with other kids. He quickly gets frustrated and starts screeching at the top of his lungs if things don't go his way or don't work the way he thinks they should work. If we change his schedule or change the rules we've agreed on for something he has a really hard time adjusting to it. If we're supposed to be going to the store and for some reason decide not to he'll completely melt down and start crying because we're not going to the store. If we try and make him stop doing something so we can do something else, such as eating dinner (unless he's really hungry) or to go run an errand he will completely ignore us and keep on doing what he's doing. There have been a number of times where I've had to talk to him several times before he even recognizes that anyone was talking to him because he's too lost in what he's doing. He has real challenges following directions. He's fine if you walk him through step by step, but if you ask him to do a complete task he just won't do it, or he'll only do the very specific part he's told to do. If I ask him to clean his room, he'll clean up his room and assess it to be done, but he'll do it with very exacting detail if I tell him specifically, "Pick up all the pieces to the train set and put them in the basket." He'll go above and beyond and pick them up from anywhere he's seen them in the house. He'll sing the same repetitive tune for hours, or say the same word or line over and over again when playing or on car trips. The other day we had 15 minutes of him observing "Car, car, car, car" then another 7 of "sign, sign, sign, sign". There have been days where he's done this for hours even though I'd asked him repeatedly to stop. He agrees to stop, but then goes right back to it. It's making me feel like I'm losing my mind! Seriously, we're all about the gentle parenting here, but some days I just want to scream at him to cut it out already because I just can't take it anymore! Thankfully it's not all day every day, but it's started becoming more and more frequent as he gets older.

I've set up an appointment with his doctor and she needs to see him before they can give him a referral. His appointment is at the end of April, which just seems like forever away. I just kind of wish we could kick it off and get it started already. I know part of it's because I'm patient, but it's also because I'm really hitting a point of frustration. While it seemed like everything was just minor stuff before in the past few months it seems like everything has just gotten really challenging to manage. A part of me just wants to know so we can get on with the process of learning how to handle the challenges already. At the same time, a part of me is afraid if I wait I'm going to chicken out of actually getting a diagnosis because I'm afraid of what's going to happen if we get a diagnosis, whatever the diagnosis is.

I guess what I'm saying is I'm overwhelmed and intimidated. I've been afraid to post here because I'm not sure if I even belong here (with no diagnosis it's really hard to say my son is "special needs" without feeling like I don't have the right). I don't even know how to handle it because I don't have any friends who have been through the process with their kids. I don't know what we're in for, which has me totally intimidated. A part of me is afraid I won't be taken seriously or that I'll end up facing the same thing my mom did when I was younger, just a snap diagnosis of ADD and throw some drugs at the situation. It seems totally stupid to be intimidated by the process. It's totally easy to try and convince myself that I'm reading too much into his behavior and he's really just a normal boy for his age (though watching other boys his age play at the park and seeing him with his friends, it's pretty obvious that he's different). I just don't know.

Sorry for the rant...I just feel like I needed to talk to someone who might understand and might be able to offer some support, encouragement, or information on what I should be prepared for. I feel like I'm completely going into this with no idea of what to expect and no friends that understand (thought they try as best they can). It's just so strangely isolated and lonely. Thanks for listening.

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Old 03-26-2013, 03:43 PM   #2
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Re: Intimidated by the Process of Getting a Diagnosis

Lots of Hugs. I am like you, once I have made the decision to do something I want it done yesterday. Hang in there. You are a very intune parent. I can tell by the way you speak of him. You will do fine once you learn what it is that he needs. Hang in there.
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Old 03-26-2013, 05:17 PM   #3
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A diagnosis and any services that come with it will not change who he is. It will only help you all understand where he's coming from and help everyone, including him, learn constructive ways for him to cope with the world around him. I hope things go well and you get some positive help from this!!!
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Old 03-26-2013, 06:10 PM   #4
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Re: Intimidated by the Process of Getting a Diagnosis

It's hard to know what to do. Your appointment in April is just the regular Dr to get a referral, right? I just want to warn you that you should probably be prepared for a long wait. We are still waiting for our appointment...we're over half way through our seven month wait. Your Dr may be able to rule some things out in the meantime, and to give you some ideas of what to do. The Dr can also get you started with some therapies he may need even without a diagnosis. Since he is school age you could get an evaluation there....they won't give you a diagnosis but you would get in fairly quickly and they may be able to provide some services.

I hope that you get the answers you're seeking and can figure out what to do. I know the choices aren't easy, just keep in mind that you know him best and follow your mama gut.
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Old 03-26-2013, 06:46 PM   #5
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Re: Intimidated by the Process of Getting a Diagnosis

Thanks, you're right, good may come from this I'm just trying to take a deep breath and roll with it. I just wish I had more support at home, I guess. It's hard to go through something the people in your life don't understand, especially when it's something that people might judge you for. Sometimes it just feels really good to be heard, ya know?
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Old 03-26-2013, 08:33 PM   #6
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Re: Intimidated by the Process of Getting a Diagnosis

One step at a time mama. The doctors will guide you through it. Just remember that even with a label, he's the same kid he was the day before he had the label. Labels=services. I know when DS was first diagnosed ODD, I was so caught up in the label that I forgot that he was the same little boy he was 3 days earlier. I have to make myself realize that good parenting is good parenting, regardless of the labels.

Good luck!
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Old 03-27-2013, 01:33 AM   #7
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Re: Intimidated by the Process of Getting a Diagnosis

I know this insanely oversimplifies what you're experiencing, but maybe it will help your anxiety about labels.

It's like you're forcing your left-handed child to be right handed. It just doesn't work. He's left handed! Let's get him some left handed scissors! Let's get him some pens that don't smear! Let's get him some notebooks with the binding on the opposite side!

These aren't bad things. These things are tools. And you giving them to your son doesn't mean anything except that you're a good parent who is giving her child every bit of resources to make them into a well rounded person.

Naysayers can go to h-e-doublehockeysticks.
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Old 03-27-2013, 06:38 AM   #8
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Re: Intimidated by the Process of Getting a Diagnosis

The process is SO long and there are so many people involved that it gets overwhelming. It does get better. We're on week 6 of therapy and everyone is commenting on the marked improvement. That alone makes all the stress and frustration worth it.
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Old 03-27-2013, 10:12 AM   #9
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Re: Intimidated by the Process of Getting a Diagnosis

I have to admit, I'm already starting to feel a little better about the whole thing. I love the right/left handed analogy! That really explains it perfectly! And you're all right, he'll be the same kid, but hopefully we'll be given strategies that will help him interact better, and maybe drive his family a little less nuts too. A lot of good can come of this.
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Old 03-28-2013, 10:58 PM   #10
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Re: Intimidated by the Process of Getting a Diagnosis

Sounds like you are already doing better mama! Like everyone else I just have to also add NOTHING changes with a "label" he will still be the same fun, great kiddo. Labels = services as PP said though. The best part about services is your son can become part of his team. My LO is 9 and he chooses his own therapy goals. We use his services/team/therapies to help him to cope better with the world around him NOT to change him. He isn't broken, he doesn't need to be "fixed" or "cured" - it is ALL about making things easier FOR HIM so that life is less stressful and more fun! If you are able to go into things with that attitude (and it sounds like you are already coming around to it) you will see AMAZING changes in him, in yourself, and in your interactions with everyone else. People tell me ALL THE TIME "Wow your son doesn't seem like he has SNs" that is EXACTLY the point He is still quirky but he wanted to fit in so we worked on it and now he does. If he didn't care about it that wouldn't have been one of our goals. AND just to add our son LOVES having autism - that label was the magic ticket to services, technology, funding, super amazing team members, new friends, summer camp - seriously our NT kids get jealous of all the amazing things that our "SNs" son gets to see and do.
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