5 Things I Want To Help My Audience With

My blog exists to help parents of special needs children, particularly autism, to understand that their children are more than their diagnosis, and that an autism diagnosis isn’t the end of the world. I want to help moms in particular, because we are usually the primary caregivers, to understand that you are more than just a wife and a mom. You were someone before the diagnosis, and she’s still there.

My blog also exists to show parents of special needs children how wonderful life is when taken in from a different perspective and seen through the eyes of your child, who sees and experiences the world differently.

Empower parents with the confidence they need to help their children

When I think back to when Jason was diagnosed, the first thing I remember telling myself was that I had to pull myself together. Their diagnosis isn’t about you. Of course, it affects you, but it’s not about you. It’s about your child, and they need you now more than ever. You’re going to need a heaping dose of confidence.

Confidence for what, exactly?

Everything. And I mean that. From the moment you hear their diagnosis to that first phone call you have to make to get your child evaluated, to telling certain family members to shut the hell up when they get to be just too much, getting your child an IEP and demanding that the child study team follow what’s written in their IEP, among just some of the challenges you’re going to face – you’re going to need heaps and heaps of confidence.

Self care is not selfish

Remember, just a few moments ago, I wrote that you are more than just a wife and mom? Well mama, you are and it’s important for you to not just understand that, but you need to take care of yourself too. YOU matter. And believe it or not, taking care of yourself is also taking care of your family. We all know that saying “You can’t pour from an empty cup…” Well, you can’t.

Now, when I say self care I’m not just talking about sipping a glass of wine and soaking in a bubble bath while your partner tends to your child. I mean, yes that can be self care, but what I’m referring to are the more mundane activities that we moms tend to just brush aside because we don’t seem to have the time. Things like:

• Making sure you take a shower
• Eating breakfast
• Taking a nap
• Making sure you’re getting enough sleep
• Going for a walk
• Screaming into a pillow
• Giving the guy who cut you off in traffic, and now you’re going to be late to your appointment, the finger
• Binge watching your favorite show on Netflix
• Ordering takeout because you’re just too damn exhausted from dealing with speech therapy, occupational therapy, behavior charts, token boards, child study teams, judgmental family or judgmental school nurses, et cetera to even think about cooking dinner

So take care of yourself mama, your child needs you to bring your A game, and you can only do that if you take care of you first.

Accept the diagnosis, but reject the prognosis

When Jason was diagnosed, I kind of already knew. Aside from that mama bear intuition that we all have, I once worked as a medical transcriptionist and one of the accounts I worked on was the MIND Institute at UC Davis. I LOVED working on that account because the work was fascinating and I learned a lot about autism and other developmental delays including the potential signs of autism. Jason had quite a few including global developmental delay. He didn’t walk until he was almost two, and he didn’t start saying anything significant until he started occupational therapy.

When your child is diagnosed, accept it. It will be okay.

What you definitely shouldn’t listen to are any prognoses that are made about your child. This includes anything from being told your child will never talk or be able to hold down a job and live independently, to being referred to The Big Bang Theory and being told that Sheldon seems to be on the autism spectrum and he’s doing just fine. He’s a fictional character in a sitcom. Of course he’s doing just fine, his on screen life was scripted that way.

My point is this, some children need and take a bit more time to reach certain milestones. Be patient with your child, and yourself.

To let you know that you’re allowed to feel all the feelings

I know I just told you that you should accept your child’s diagnosis. However, accepting it doesn’t mean you can’t be angry, sad, shocked, relieved, or a mixture of all four of these emotions, and even more.

You are absolutely 100% allowed to feel these feelings, and more. You are allowed to scream, cry, sit there stunned or even laugh a little. I did. All of these. Sometimes, I still do. But here’s what I don’t do. I don’t do any of these in front of my kid. I never want him to feel as if I’m reacting to him or anything he did. It almost never is, except for that one time he poured hand lotion all over his sister’s brand new MacBook almost 10 years ago. I honestly think he was just being a little kid and pushing boundaries when he did that, so I don’t even count that as having anything to do with being autistic. Just a 5-year-old little boy doing what little boys do best – get into trouble and piss off their older siblings.

Anyway, what usually sets me off has nothing to do with Jason himself but situations that happen because of the other people we have to deal with from time to time. For instance, I made the very difficult decision back in 2013 to start Jason on medication for his intense anxiety. He was started on a low dose of Zoloft. He did very well on it, and it helped tremendously. Now, during that summer there was an awful stomach virus that hit Jason’s extended school year class. He got sick in school, and so did one of his teachers. When I picked him up from the nurse’s office I asked if it was definitely stomach virus related because we had just started him on the Zoloft and I was hoping it wasn’t the medication that made him sick. The nurse had the unmitigated gall to question why I would put Jason, who was almost 7 at the time, on medication. It was her tone. It was judgy. I don’t like being judged on my merits as a mama bear.

Stunned, I looked her dead in the eyes and asked her if she would like me to go to the principle, who I was quite friendly with because she adored Jason, and inform her that the school nurse was questioning a decision I made with my husband, Jason’s pediatrician and child psychiatrist. A decision that took me almost six months to make because I only wanted to do what was best for him, and his anxiety was so bad he couldn’t focus on anything at all.. She backed off, but when I got home with Jason I made sure he was okay, let him go to bed to take a much needed nap, and then I went into my bedroom, locked the door and first screamed into my pillow and then cried.

But I didn’t stay there. I had a good 10-minute cry, washed my face and got on with my day. So, you’re allowed to feel all the feelings, just don’t set up shop there. I know it’s hard not to, but it does nothing for you except cause more undue stress. Some people are just insensitive pricks, and we unfortunately must inhabit the Earth with them.

To build an autism parent community

You’re not alone. I know it feels that way sometimes, but I’m here. My main goal in creating this blog is to ultimately create a community for special needs parents. A community where we focus on the positive aspects of raising a child on the spectrum, and leave all the negative crap behind.

So, in conclusion, my blog exists for those parents, moms especially, who are looking for that comradery that comes with the territory of being a special needs parent. We’re the mama bears and the papa bears who adore our baby and little bears, and would move heaven and earth in order to give them everything they need.