What do you wish you had known then?

Post Reply New Topic

I was thinking today about some of the things I wish I had known when I first got my daughter's diagnoses 7 years ago. Thinks like the best doctors, what websites to read and how to connect with other parents so I didn't feel so alone. What are some of the things you wish you had known?

PRAGMATICS. I wish I had known to ask for speech therapy when my extremely articulate but social-speech-challenged son was first diagnosed. From what I've read, schools are generally not forthcoming with information about social speech therapy.

I could write a book on this, but depending upon what we are dealing with, I think my answers would change significantly, so these are random thoughts based on our challenges today.

I was kind of lead to believe that one day she might "grow out of" her autism and "only" have ADHD.

I was also initially lead to believe that one day she could be indistinguishable from her peers.

I feel very lucky to have learned a more "autism-friendly" view very early on thanks to some generous adults on the spectrum who held my hand through it all. That being said, my son's primary diagnosis is ADHD and the truth is, if my daughter "grew into" his level of functioning, she'd be worse off. Perhaps other people's brand of ADHD is not as debilitating as his is, but for him, it is awful. Definitely not an upgrade of any kind.

Secondly, she is now to a pretty large extent "indistinguishable from her peers" but this isn't exactly a blessing. She is still autistic and her wiring is still incompatible with mainstream society. Sometimes the whole "indistinguishable" thing ends up being a curse because it can lead people to have completely unrealistic expectations and little tolerance for her when her underlying neurology peeks it's head out from all of her well-learned compensatory strategies.

I think it would have been better for us if there would have been no focus on "fixing" her and total focus on figuring out what her strengths were and how we could use them to her advantage.

Again, I feel pretty lucky because I think I still realized this fairly early on. But I almost feel like I stumbled upon that alternative view by accident. It wasn't like most of her therapists were saying to me "look: there is a whole community of functioning autistic adults out there. She can be one, too." Like many people (I think) the idea of adult autistics didn't even occur to me initially. And I honestly don't even know what would have happened if I hadn't "stumbled" upon them.

I would have wished that I had eased up on my son earlier, and that I pushed the school harder to accommodate earlier, as well.

That your child with Autism might be happier than you are, and if thats the case then the fact your child has Autism, remarkably must actually be an OK thing.

Amen.

I wish I would have known he had ASD way back when...I would have gotten him better help and understood him better.

This is going to sound odd but, really, nothing. All my issues are from before we got that one key: ASD. Once I had that key, and the charge from the school psychologist to READ, READ and READ, things fell into place relatively quickly. Within months I had found an ASD forum (that was before this one) and was reading what those with ASD had to say: that was amazing information. A lot to dissect at first, but in the end pretty much everything I needed to know was found buried in those words. Not to say there weren't struggles along the way because, obviously, there were some doozey's, but I felt like I knew how to find the insight I would need to figure it out. For me, there is nothing like reading the hugely varied perspectives of people who have the condition I need to deal with. Sometimes it is really, really scary and off-putting, but there is always something in it I need to understand if I want to help my child.

Could you elaborate on this? Ease up in what way? What thing would you have let go or taken it easy on? I think I'm in need of doing this... but I feel like it's so imperative that I don't drop the ball.

I can't speak for Momsparky or ASDMommy or why they feel this way, but I can tell you how I felt: pressured. To do everything. To try everything. And if I wasn't, then I was failing my daughter. I also felt like I SHOULD be trying to make her indistinguishable from her peers: that every stim, every idiosyncrasy, every trace of autistic behavior should be caught and abolished.

For me, I was able to let go of the second part fairly easy. She's not NT and she never will be. Trying to force her to be someone she was not seemed selfish and foolish to me. That doesn'tt mean that I haven't done everything I can to make her as functional and independent and happy as possible. But nothing I have done has been to make her be indistinguishable from her peers. It's not her destiny and I am fine with that. My job is to make her fine with that.

The first part was a lot harder to let go of. The whole "warrior mom" thing is very difficult for someone who has a very different perspective. I dropped away from a number of ASD moms because they either overtly--or behind my back--passed judgment because I "wasn't doing enough" to "defeat autism." They are entitled to their views as much as I am entitled to mine, and we all love our kids--we have just chosen different paths. But it seems they didn't share that view. I was "wrong."

For me, it has gotten easier with my daughter over the years because she is doing very well and I think it is clear I have made the right choices for her. But I know in my heart if she was still struggling like she did in the beginning, I would still be wracked with self-doubt and feeling like I should be "doing" more.

ellemenope, how old is your child, how long have you been doing "this" and what kinds of things do you feel you may need to ease up on? If you elaborate, I'm sure you will find the depth of experience on this forum to be helpful.

The world tells you that you are constantly supposed to be pushing. (Except when you want help, and they think you are making a big deal out of nothing--because it is not a big enough problem for them.)

The thing is, sometimes you just run into a developmental issue that is not going to be fixed no matter how hard you try to (gently) ram your square peg through the round hole. There are things you don't understand are hard, because you can't find a reason. It does not make them less hard, just because you can't figure out why. People will tell you that you are wrong when you try to pull back and take a break to rethink something that is not working. They will say you need more pressure. When you sense that is wrong, it is hard to listen to your gut.

The honest truth is sometimes you will see great strides in your child, but to others it is not enough. The constant pressure can be too stressful and erode the progress you have made.

At first, I had to learn what reasonable expectations were, to celebrate the progress made, and stop looking at grade level social/emotional milestones as even being remotely realistic (for us.) I still have to keep track of them, so I can understand the perspective of others, and so I know what faulty basis they are coming from. On the other hand I had to look for windows of opportunities to know where more progress was likely.

Then, I had to start protecting him from others who did not understand the notion of realistic progress. At the same time, I had to deal with the school who didn't really care about the hard stuff until it seeped into behavior. So it is protect/fight, protect/fight-- ad infinitum.

I wish I had better judged when to fight and when to protect; when to trust people knew what they were talking, and when they just thought they did.

We were totally and absolutely clueless that my son had a disability - so we assumed he was just being deliberately obstinate all the time.

Think of the way outsiders sometimes treat autistic kids who act up in grocery stores - we parented to that standard. None of DS's objections to things made any sense to us, so we forced him to do things (like put on socks, or go to kids' movies) that made sense for us. I had no idea that these things were essentially torture for him, and his behavior was a reflection of being tortured.

I knew it was something but since we didn't have any kind of help or anybody who had a clue, we were extremely punitive over every infraction. We were given all kinds of horrific advice from professionals - from suggestions to hold him down during meltdowns to suggestions that we were being too soft on him. I yelled and lost my temper a lot. We believed we were bad parents (which, to be fair, we were) but we didn't have any clue how to change and so our house felt like a big scream-fest. In addition, DS wasn't getting what he needed from the school and developed OCD-like tics due to his anxiety.

It took years to get appropriate help.

Thank goodness for this forum, which I credit with turning the whole thing entirely around. Our entire family was terrified. We did finally find some professional help that worked, but figuring out how to find someone who took us seriously and who wouldn't suggest that we punish him more wouldn't have happened without the direction we found here.

It is very difficult to find the line between holding them accountable for growing normally (by "normally" I mean whatever trajectory is normal for that individual child - DS does need to be nudged a bit) and holding them to too high of a standard. We're not perfect yet, but we now have a partnership - DH, DS and I - and we work through things together. Not perfect, but I can't express how much better things are this way. I only wish I could get back those years we lost...

I wish I had known I needed to hire a bull-dog advocate from the beginning, instead of wasting time with advocates who knew the rules but weren't effective in getting the school to do the right things.

Reading some of this, I wonder if in some ways it hasn't all gotten harder now that there is so much more information. When we started down the path there weren't all that many "do's" that people could give us, outside of highly controversial therapies we knew weren't right, so we were largely on our own. That cuts down the guilt factor; I was never going to feel guilty about not doing chelation or biofeedback, although I did have to consider if I wanted more aggressive OT or try out special diets.

And it certainly makes a difference when the things you do try end up with positive results.

You do have to read broadly and consider everything, and disassociate yourself from the hundred voices and pick what seems to right for your unique child and your unique family. For me, it was almost as if I knew when something made sense and something didn't; very few things were ones that I tried with severe doubts, but even then there was something in me that knew I should at least try it.

I do sometimes wonder if I could have turned what seems to be a good result with my son into a spectacular one, but then I step back and remind myself that that was never my job. My job was to get him where he most needed to be and have a happy child. Which he is. Could I have done more? Probably. There is always "more." But, shoot, I have needs, too, and they matter, too, and "more" would have meant sacrificing all those, and that would not have been a good example to set for my children. So, I'm comfortable with the balance. I'm not person X, I'm person Y, and as person Y I can only do what suits me as a unique person.

But, yes, there seems to be so more much pressure on families today. Is has to be hard to step back from it. Yet, you really do have to. Just as I did back then when people were touting things I found crazy, you still have to even when people are touting things that make some sense. Special needs kids are still KIDS, and still need the same thing all kids do: some time to just be who they are.

You've been an excellent asset to all of us here.

I was also given the advice to hold my son down during meltdowns. I also was told I was too soft on him. But, like you, I yelled alot. And, as I am a really stubborn person, I did not 'give in' much either. My son has been having major meltdowns since he was a baby. I was more patient with it when he was younger, I just thought he was really passionate and would outgrow it. Well, he didn't outgrow it. And, then I had no clue that it was that he was incapable of managing his own behavior and assumed it was a power struggle all the time. It did not help that his preschool (even though a special ed preschool) kept telling me the same thing. I would go back and forth between 'it's not his fault, something else is going on' to 'he is being difficult on purpose'. And, the school was telling me that I was "Holding my kid back. He should have better coping skills by now. I must be too lenient, or not structured enough." I honestly think that they felt frustrated that their own therapies weren't 'working' as well as they 'should', so turned the blame to me instead of looking at the issues in a different way. They even put him in gen ed for kindergarten and tried to remove the counseling on his IEP because they thought it was 'just me'.

Thank goodness he had the best kindergarten teacher ever. She was a gen ed teacher, but used to be special ed. She did not take his issues personally or blame me. It helped me realize more that I have to push for a diagnosis. The parent coordinator (who has a child on the spectrum) also took time to gently suggest that I evaluate for ASD. I met another mom who I became friendly with and learned she has an older son with Aspergers. She was one of the few parents I did not feel judgment from when my son spent most of the play date with her NT son melting down, being rigid, crying. She gave me a book to read, and also carefully suggested I look into further evaluation.

But, I feel terrible. I have not shown much patience or understanding in the past. I would see other kids with their parents and feel the other parents judgment when my son was being super rigid and melting down, and I would feel like a failure. And, I also felt a lot of pressure to 'fix him' as well.

-Fitzi