In the process of seeking a diagnosis...

chardonnay24 · August 2012

how did you deal with people that said, "there's nothing wrong with him!"

There are several people in my life (husband, most of my family and friends, youth librarian) that are not supportive of my seeking opinions on A's issues. I hear a lot of, "He's a normal toddler, he's just fill in the blank."

I know that something is wrong. I don't know what it is, but even the pedi was concerned enough at his 18 month check up to refer us to a developmental pedi and hearing specialist.

I guess my instincts could be totally off, and I could be completely paranoid about nothing, but in the meantime I would feel better having him evaluated. I am getting really tired of people telling me that I'm seeing things that aren't there. They are there. They may not end up being "anything", but they're there.

How did you deal with the non-supporters? Since they are most of the people in my life, I can't very well cut them out. I could really use their support as we go through the process, and I'm feeling fairly alone in all of this.

ABColeslaw · August 2012

I commented on your other post. I could have written both of your posts. We have family that is angry with us for letting our "perfectly normal beautiful toddler" be diagnosed. It is difficult, but we've had to grow a tough skin and ignore people. My mom gets very pissy when she asks "Why aren't you free?" and it is because of speech, OT, ABA, PT, Developmental Group...what have you. She thinks it is dissapointing that we don't just let him be a normal little boy. Didn't you know that boys are rough and tumble and bursting with energy and that they don't talk until age three and that they are too busy to make eye contact for more than 30 seconds....blah blah blah. It is difficult.

Anyway, we started with a developmental pedi. I didn't go in search of a diagnosis perse, because I thought we had our diagnosis...sensory processing disorder. But then she unloaded a diagnosis of PDD-NOS on me. It was unexpected and I reacted badly to it.

From there we decided that even though we don't entirely agree, we'd start ABA for him, since it wouldn't kill him and we couldn't afford to be wrong.

And then we took him to a Neurologist. Who evaluated him over the course of two visits and gave us the same exact diagnosis of the developmental pedi, but with the hope of "His diagnosis will be evolving, because he just barely meets the diagnostic criteria" So we'll see what she has to say in three months.

What I can tell you is that no one in our lives believe us. They say things like "How come something has to be wrong with him?" Because they clearly have no idea how hard it has been on us to come to terms with it or how often I stay up until well past 2 am crying about it. It doesn't matter, people will always have an opinion....but nothing compares to your gut feelings and insight to your own child.

If your gut it telling you something is wrong, then you do what you know you have to do.

Hugs, I can tell that this is really weighing on you. Just know you aren't alone by any means.

d.f · August 2012

I wish I would have listened to my gut earlier. I let people's well meaning "he's just a boy" placate my very real concerns. Even my husband didn't really get it at the time so I wasn't overly vocal about it. It took the SpEd teahcer at DS's inclusive preschool and my pedi backing her up and validating my concerns to spur me into action

Now I'm learning not to care. The first words out of my dad's mouth when I told him about DS's Dx were "Doctors are only practicing" He seemed offended we were even having him evaluated. Maybe I'm getting thicker skin but the only person whose opinion I really care about right now is DH and if I don't agree with what he thinks I tell him why I hold my opinion and he almost always comes around. My dad is never going to believe my kid has ASD and really as long as he doesn't undermine me or my parenting I don't really care. DH's dad had a similar almost offended reaction when we told him we were going to a Dev Pedi. Okay, it still annoys me but it has no bearing on the decisions I make.

chardonnay24 · August 2012

It is really weighing on me. At first, I was just frustrated that I had a "challenging" child, and told myself that he was spirited, high energy, stubborn, and had a mind of his own. Now that we're starting to have some real communication and sensory issues, I'm beginning to think it's more than that and it's giving me lots of anxiety. I'm having trouble parenting him now - I can't imagine what life will be like as he gets older. As I mentioned in my other post - I really don't enjoy parenting him right now. And if this is something he won't just grow out of, I'm scared that I'm going to spend the rest of my life tired, and frustrated, and upset, and I feel terrible for feeling that way.

It is especially hard that my H doesn't seem supportive. If I try to talk about it - because I am trying to get a better idea of what others' perception of certain behaviors, or lack thereof - he just shuts down and refuses to acknowledge any problems.

The last thing I expected when I mentioned these "insignificant" things to the pedi last week was a referral, and it's been a really hard week for me since then. I can't imagine what it'll be like if we do - or don't - end up having something wrong. Hopefully it'll be easier for me. It's just the unknown that is scary, I guess. And the going about it alone.

annibes · August 2012

I'm sorry. I wish I could tell you that part goes away with the official diagnosis. I thought it would, but I was sorely mistaken. Family is in overdrive of "oh it's mild, he'll do fine. The pedi could be wrong.." I toe a line, because he is mild, and because he will do fine and I want people thinking of him positively. But there have been instances where I have to say, "I do this for a living. I assure you the developmental pedi is not wrong." I then usually have to point out some examples of what he is doing that minute and compare against typically developing kids. That works for the day, but we go through it again every time we get together.

lite-bright · August 2012

Honestly, we didn't tell anyone until after we had the dx (DD1, ASD). I had enough trouble convincing my DH that DD1 needed to be evaluated and when I did express some vague concerns to a couple of other people, I also got "she's normal, you expect too much, all kids develop at their own pace, yaddayadda." The same things DH had said before he came around. People mean well by those kind of statements, but they don't help and can actually be harmful by discouraging parents to look for help for kids who need it.

I just didn't want to deal with being questioned on all sides when I knew something was off. I'm not even sure that would've been people's reaction, but I had already second-guessed myself so much that it delayed the process and I didn't need any more of it. We basically decided that if we had her evaluated and nothing was wrong after all, then people didn't need to know -- and if something was, then we'd already have a professional's opinion supporting what we told people.

We got a lot of support, for the most part, when we first told people about the dx. I'm sure they were a bit blind-sided b/c they didn't even know we were having her evaluated. *shrugs* Other than a couple of foot-in-mouth remarks, it went well and life went on. If people question the dx, they don't say so to us.

So I'd probably avoid talking about it to the people you know aren't going to be supportive. Yes, it'd be nice to get support, but it can take a looooong time for people to come around, even when you do have a dx from a professional.

LydiaE2 · August 2012

We don't have much of a relationship with the "non-supporters" in our life anymore. Like Auntie says, you're on "Team Thomas" or not and those that are not are a big part of our life anymore. I no longer am as close as I was with most of my mom friends, most just don't understand much of my life anymore. This is okay.

I think it is really important to get your husband on board with your feelings at least a little bit. You will need the support of your husband to get through tough days and to help implement your at home therapy programs.

Your family and your good friends will either come around to understanding what's going on support your family or not. This is their decision.

It is important to remember that most people do not have a good understanding of what is normal development (some of these people are pediatricians and other medical professionals). I found that for those that just truly don't know, it was helpful to point out what normal behavior was or a skill a normally developing child would have that we could all agree my child didn't have. This helped with great-aunts, and great-grandmom.

When you tell people you think something is wrong with your child, most people react by saying "oh no, that can't be, all children develop at their own rate." But what they are really saying is, if your child isn't normal, that may mean that my child isn't normal, what a horrible thing to deal with, I can't deal with that so I am going to stick my head back in the sand. Most people are terrified that their child could be anything other than perfect, and you admitting that your's isn't reminds them of this fact.

I have found new friends, other parents at my son's therapy clinic, an awesome nanny of two kids who are typical peer models at the clinic. I have become closer with some people I was not as close with before, their children were having issues, and my openness about our situation allowed them to reach out and we have become closer.

Lastly, I recommend counseling for you and your husband. The life of a special needs parent is not easy and you need to be in good mental health to make the tough decisions and to deal with how your life will be different.

kcisthebombdotcom · August 2012

I just don't talk about things with people (like my parents) who think that nothing is wrong. I let them live in this blissfully ignorant existance where my DS is perfectly typically developing. When I notice we'd go back and forth about it, I simply told them I wouldn't come visit anymore if they were going to argue with me about it. They stopped. I know what I am doing is right and best for my child.

My DH was like that in the beginning in terms of thinking that DS was "normal" and would talk in his own time. When I started involving him with his testing and appointments with his SLP/OT, he moved from thinking I was a crazycakes to being on board and very supportive with everything.

RevivingOphelia · August 2012

I'm kind of going through something similar (but not exactly the same right now). I strongly feel my LG has expressive language delay. No one in my family agrees with me. So I spoke with our family doctor one on one about it. No husband present. She said if I am concerned, to call and book for an assessment. So I did, and then got the appt and just told my husband we were doing this. If they say at his appt he is on target, then great. If not, then we've started on our way.

So, my suggestion is just get him evaluated and ignore what everyone is telling you. Book the appt and go from there. If you end up having to hear a few "I told you so", it is way better than putting it off and making it way more difficult to correct as they get older.

*hugs* Hope you get things sorted.

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