Here comes #'s 6-10 of what newly autism diagnosis parents might find useful!
#6 Be prepared to advocate for your child
Seems logical, right? Well, you're going to run into a LOT of people with opinions about this or that or how you should do this or that thing over there, and you are just going to have to suck it up and figure it out for yourself (see #5 and #7!), and then push that agenda forward.
I have been in the professional field for many years now, and I have my own opinions (as do everyone!) about what therapies or strategies yield the best results. BUT, if I have a parent who doesn't feel it's right for their child, I can share my opinion, but I will, in the end, respect that family's decision on what they think is best for their child. I may not agree, and I may not provide the service they want (if we disagree on it), but I empower a parent to make that decision for their child.
Not everyone will feel that way. Some professional will think you HAVE to do this or that, and other professionals (probably more of these!) will think you are doing too much! Well, to them, I say, you haven't had a child with autism, have you? Watched him disappear into his own little world, saw her retreat from life, endured the hours of meltdowns at home or the hours upon hours of sleepless nights. For me, I wanted my wee little child to be engaged in interactive and researched-based ABA therapy for as many hours a day as I could get. Most of it was in-home therapy, but I had to educate and sometimes legally "encourage" the school district to make sure they were doing it when he was there, too. I had to advocate for him, because he didn't know what end was up.
You will also have to step in to help your child navigate social situations. Just par for the course. You may have to make that call to the parent and "educate" them on not excluding your child from a birthday party when they choose to invite the whole class except for yours (passing out invitations at school; that's lovely), or you may have to set up counseling appointments and make him go, or whatever it is. Be your child's best advocate. He or she will need you for a very long time, and that's OK! It's part of the joyride!
#7 Research therapy options
Now, this is an ABA blog, and I'm an ABA advocate, so I would tell you that it is the gold standard for autism therapy and the most research-based and proven therapy for outcomes, BUT I want you to look into it on your own and find out what else is out there. If you just take someone's word for it, when things get tough (which it will!), it will be easier to quit and give up. So, look into it, but also look into other options out there: OT, PT, Speech Therapy, play-based therapy, school options, dietary changes. Whatever direction your personal research takes you. Make sure you are looking for not only parent testimonials, but two things: 1) proven methods and 2) your gut feeling. You will find what formula is right for you and your family.
#8 Set the bar HIGH
Don't walk away with the baseline of skill sets you get from the diagnosis or early evaluations and think, "Well, this is it!" If nothing else, take away thing. These kids can LEARN! Like you wouldn't believe. Their potential is amazing! Now, not every child will progress to the point of losing a diagnosis, but in all my years, I have never ONCE seen a child not make meaningful and measurable progress. I've always said it's like they are walking up an escalator going down. You have to constantly be behind them, prodding them along, making them move (and move faster than the push downward), but if you do, they can conquer the escalator!
I found over the years that if I set my expectations of my son's progress at a higher level than I realistic thought he could meet (not unreasonable, just "that much higher"), he would either at least go further than I hoped and often make it the whole way. Most of the time, it would take him longer than his peers and he had to work harder to learn a lot of things (driving is a great example!), but he would eventually get there. Now, if I never expected it out of him, then he would never have done it.
So, aim high, let them impress you. And if they don't make it, set a new bar. As long as you're moving in the right direction, the pace really doesn't matter! It's the tortoise all the way!
#9 Expect results
Relate to #8, but this is really about your expectations about therapies and the like. Give it some time, of course, when you start something, but if you are not seeing measurable, observable behavioral and skill set improvements, go back to the drawing board. I say give something six months, go all in (especially if you are going ABA; those first few months can be HARD), and assess if you are making progress.
Things to ask yourself: Do I feel like my child is happier now? Is the family more at peace? Do I see changes in his/her behavior that make their life better? Is she/he better able to access the world around them, engage in learning? Do I see measurable progress (hard data)?
If you are not going in the direction you feel you should, sit down and talk to your provider. Share your concerns. Then, as always, listen to your gut.
#10 Embrace reality
This is actually the hardest one to write and the hardest one to stomach. When you go through these grieving cycles, it wears on you. It's really hard at times. You grieve for lost childhood, for a different family dynamic than you expected, for loss of a playmate to siblings, milestones that come and go without you, and on and on. It's OK for you to be mad and hurt and lost at times. I give you permission. Yippee. That's all you need, right?
In the end, that baby boy or that sweet girl of yours, is just that....yours. It is painful at times, yes, but it is OK to just love them for where they are. The end of the grief cycle is acceptance. I think we go through one BIG cycle and all these little micro-cycles along the way. I think I didn't hit "acceptance" until our son was maybe 15. I always held out hope if we just continued to do this, to push him, to expect more, that somehow he would magically catch up completely. Didn't happen. He will always have autism. He will always have struggles. But he will make his way in life, and I'm OK with that.
Maybe yours will be that rare case to progress fast in the early years and go on to lead a completely normal and unencumbered life. But, chances are, you are one of us! The 99 in the flock who just get by day-to-day and have to accept where we are. Doesn't mean we won't work our tails off for our babies, but we will also love them for just simply who they are. And who are they? The coolest kids on earth. That's who.
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