I kept meaning to make a post during Autism Awareness Month, but got completely swept up in the bustle and stress of closing on our new home! After several days painting, moving, fixing, and setting up – we are all moved in and we absolutely love it.
Lately I have chatted with and observed several fellow Autism Mommies, or at least fel
low “my-kid-may-be-autistic-but-we’re-not-sure mommies”, up close and it’s interesting to listen to them talk about their kids and how they are handling it. I am amazed at the dedication and the love these mothers have for their kids. But I am also reminded of how difficult and scary the Autism Diagnosis can be at first for these parents to accept.
Last week at Courage Reins where Fitz (and soon Holden) takes beginning horseback riding lessons, I was talking to a mother about her 2 year old son who has been told may or may have ASD. The boy doesn’t make eye-contact, has a really hard time with verbal instructions, and differentiation, doesn’t bond or connect well with others, etc. As I listened to her I saw so much of myself 2 years back when Holden was first diagnosed. I completely identified with that not-quite-dashed hope in her voice that just maybe he lines up his cars because he’s orderly, or maybe his need to touch every car he walks past twice is just OCD instead. As a casual observer I could tell he has autism, but it’s harder to swallow when you’re the mother. And I know that.
Another mother who had to breathe with her son and talk him down out of a huge screaming meltdown because he SAW a vacuum, explained to me that he just has sensory issues. Autism is a very scary word for parents. There’s no cure, there’s no single pill that can minimize the symptoms, and there are very few people (unless they are parents or family members of someone on the spectrum) who really understand it, so it can be very lonely.
I don’t blame parents for wanting to hide from the diagnosis. And I understand why parents want to explain the behaviors as something else – anything else that might sound more normal, more typical. But it does just make me want to hug them, and tell them they’re still doing a great job, and promise them that there’s SO much progress that can be made. But that would be weird, so instead I’ll just write a blog post they’ll never read and tell them what I really want them to know (because that’s not weird at all…)
1) Having a diagnosis helps you get services. Plain and simple. If you get a diagnosis of an Autism Spectrum Disorder (PDD-NOS, Autism, Asperger’s, Rhetts, etc) then you can get access to early intervention services more easily, you can demand an IEP and request certain services at Public Schools. And with the Autism Waiver now in effect in Utah, you can get access to in-home ABA and speech therapy for up to 15 hours a week, as well as options for respite care.
2) Not having a diagnosis doesn’t make the behaviors stop. If your kid is not making eye contact, lining up his cars, engaging in stimming behaviors, has echolalia, or maybe is older and is smart but alienating, doesn’t have any friends, speaks in a flat monotoned voice, has terrible physiological tantrums – or any of the myriad of other signs that your child may be autistic, then NOT acknowledging it isn’t going to change anything. So there really is no reason not to get a diagnosis. If you’re afraid that people might judge you or think your kid is weird, trust me – they already do. Holden has come a LONG way but it’s never more apparent that he is on the spectrum then when we are in new situations. And it’s easier for me and better for him to be able to say: “My son is autistic so this is really new and hard for him, but right now we’re working on _____ so thanks for being patient.” It’s better to have a name for it than for people to just think you kid is weird or odd. One of my favorite places to send people is the Carmen B. Pingree school. It’s far less expensive than most private facilities and definitely less expensive and more efficient than finding a neuropsychologist.
3) All new experiences are good for your kid. I’m so impressed with the moms who go to music class and reading time, etc even when they have kids with disabilities, disorders, etc because I know what it’s like to have the kid everyone is staring at because he’s having a breakdown or tantrum. It is hard, but it’s good to leave the house and introduce new experiences to them. Don’t keep them in the same routine all the time or they will have an even harder time entering new situations. First times are the worst. The first time I took Holden for a haircut, it ended with both of us in tears. But now he is more use to those loud shears and clippers touching his ears and handles it so well. The first time we took him to the dentist, he was a nervous wreck and wouldn’t even let them brush his teeth. But now he’s a rockstar and walks in with confidence every 6 months. The first time we went on a vacations was miserable. He just wanted to go home. But now he knows what that means and that we will come back! The first time he sat on a horse was last week and he was so trepidacious, but I will keep taking him back there because it’s good for him to overcome this. Firsts are hard, but don’t stop with them.
4) Change your parenting style but not your expectations. When I first got Holden’s diagnosis I thought it was the death of my son. It was a huge blow. I felt the whole gamut of emotions: disbelief, grief, anger, guilt….. But what I have realized is that it was a blessing to have the diagnosis because there is SO much out there to help you learn about your kid! I have read so many incredible books that shed insight into Autism, and how my kid learns and thinks. Yes there is a wide spectrum, but essentially every parent must do the same thing. They must relearn how to parent their kid. Everyone asks me how Holden has improved so much. And I tell you, it’s that we changed our parenting style to fit his needs. That’s what we did. And that’s what any good parent does. Every kid is different – we are relearning how to parent all over again with Fitz because he’s so different than Holden. What we HAVEN’T done is change our expectations. I don’t make huge allowances for Holden. He is expected to go to sleep at a decent hour, to eat what we eat at dinner, to speak respectfully, to say please and thank you, to do his homework, to behave in public. Some of these things are more difficult – or less natural maybe – for him because of his Autism, but I don’t think Autism should be an excuse for bad behavior. Yes he has sensory integration disorder but that doesn’t mean he can act rude, insulting, or violent to others around him in loud places. Yes he has issues with foods that are mushy, but that doesn’t change the fact that he needs to try it. Yes he has meltdowns in public places that are loud, but that doesn’t mean he is allowed to be rude, insulting, or violent. We focus on teaching him the skills to handle these things – like breathing, taking a break.
5) Work with your kid on the things s/he needs. One of the best pieces of advice I got about Holden came from the Psychologist who diagnosed him. He directed me to some websites and gave me a long list of resources. And then he said “work on the things he needs. Watch him play with friends and see what they do that he’s not doing and then work on those things. And on days when you’re just in survival mode and you have nothing left to give, don’t worry about it.” There have been days where I have endless energy to work with one of my boys, but there are other days when I feel like I’m barely holding it together and I think about his kind words. One of the best things we have done is take a video of Holden when he’s engaged in something and then we watch it with him later to show him what he looks like. He’s a smart kid – he’ll look at a video of himself having a tantrum and realize how ridiculous it looks. Or a video of his class singing and he’s not and he can tell he looks different. He’s an incredible visual learner. We’re still working out how Fitz learns and what motivates him :)