The Autism Chapter Pt 2

How do I even begin… I can NOT believe its been just over 6 months since we got his diagnosis and I was sitting here still in shock writing that first blog, reaching out to my amazing network. I have wanted to post an update for ages now, but life has been kicking my ass a little this past year. Not a lot of time for personal posts, and to be honest I was struggling on if I should be posting about my sons diagnosis again. It was brought to my attention about 6 weeks after my blog that a mutual friend and colleague was speaking out (or gossiping lets be honest) by saying that my son was not autistic (in her apparently highly educated opinion after meeting him on sparse occasion) and that this was an attempt on my part to get attention. Yes. She. Did. Ill never ever understand how anyone could be so insensitive and cruel, but thats something I have decided I don’t CARE to understand.  So maybe this incident had me a little insecure about who I was reaching out to for a while but THAT was only until I met my new friend Felicia in early October…. :)

I was booked to have a meeting with a new social media company who wanted to offer me some assistance with my networking and a few other cool business tasks. I had never met Felicia before, but had met her business partner Jessica in a workout class a few months before. We met at one of my offices haha, —> (ok Starbucks lol) and started out just chit chatting about my company and how things have grown, what I’m about and who my clients are…. we talked a lot about being moms and working at home, some of the challenges, it was great! At one point in the meeting Jessica got up to grab a new cup of water for her tea, and Felicia looked at me square in the eye and said, “Lisa I read your blog about your son…“She teared up and went on to say “Its like I wrote this or you were talking about us, I was so moved by your blog and had related to it so much that I sent it to my husband and he encouraged me to talk to you, would you mind Lisa can I ask you a few things? We are so worried about your little boy”… I just reached out and said, “Of course you can!”

That conversations led to a very hard phone call that Felicia made the next day, and a little boy who was in fact diagnosed with ASD just this past November. Of course we are not saying this is a good thing, but its just that “it IS what it is” and if my little blog helped to have  just one little guy get the help he needed maybe a little sooner then if I had not. Well that’s enough for me. I am not here to prove to anyone what, or who my child is. I’m just a girl, a mom, a mother who is JUST like everyone else and loves her children JUST like you. I may be in the public a little more then some, and I’m learning that it comes the  extra opinions and or as my teen says ‘the haters’ but….as my new friend recently said when I asked her if I could post about our story, she replied; “ I have nothing to hide”. Our children…., well, they have autism. So what!!

I may have let ONE negative comment sway me slightly for a second, but I have about 100 more positive comments, emails, and messages about the blog that helped others like Felicia. Not only that but…. because of your support and love for my baby and me, we have managed to build the most AMAZING team for little J. This was 100% because of that blog and it was my hope when writing it that using this network, and reaching out, I would maybe utilize that and know what??? IT WORKED!!

I can tell you building a therapy team for a child with ASD is no picnic. The funding you get is just not enough for the recommend therapy our children need to make a difference. So we crunch and we budget and we learn to do a lot of the therapy on our own. The first thing you do when you get your diagnosis is finding a Behavioural Therapist who will develop all the programs that your team will be working with. She is the top of the chain lets say… after that its up to you to advertise and build your team that will consist of about 3 BI’s (Behavioural Interventionists) that will cover 7-10 shifts per week… this is probably the most daunting of the tasks. But this is where you came in. I posted after I wrote that first blog that I was looking and you sent me the contacts that changed my life. I was sent an angel (no really, I have dubbed her Angel in my contact list) named Catherine. Catherine and I connected and she rode in on her white horse (ok it was a white Honda Civic) and waved her magic wand of AMAZINGNESS and took all the worry away. This woman who is my Senior BI is my Teams manager. Catherine is 100% responsible for the kick ass team we have and I will never ever let her go…. EVER (yes Catherine you can run but Ill find you!!) Our team was assembled and we began the training process. I began the renovating process, since we don’t have any more rooms; we turned our living room into Jakes Therapy room, which now is covered in chalkboard paint!! LOVE IT!

It’s been 5 months since our team was trained and began, only 5 months but they are part of our family. Any parent with a team like this can relate, we just adore all of them. And best of al,l they adore our son. Scratch that, they LOVE him. In the beginning he did struggle with having lost control of his situation, and with J he has a bit of a different approach then ASD kids. He does not get mad, hit, or tantrum, he gets sad. Really sad and it just pulls at your heart. I sat outside the therapy room for hours and hours and listened to him cry that first month, just wanting him mommy, it was horrible. I wanted to just run in every second and steal him away and make this all disappear. They would walk out of each session and I would go in and debrief with them, bring Jake back in and have them all hug it out, I know it was just as hard for them as it was for us to make him stay and get him accustom to this new routine. We all cried those first few weeks…. that I know. But we got through it. And now J is actually really enjoying his “big friends” and all his “work” he does. The team that consists of, Michelle, Kim, Catherine, Rebecca, and Elbert has impacted our family and J and is going full steam now. When I’m downstairs shooting I know lots of you clients have heard the BANGING and JUMPING above while he doing his “ big boy work” . Seriously these guys are the silliest group (and remarkably good looking as you can see) and LOUDEST, but they LOVE him and I won’t have it any other way

So, in a nutshell, we are on track. Mr. J is getting the help he needs and we are really happy about that. Things are changing, as life does and we are changing with it. I knew in my heart I would rise to this challenge and now I’m feeling it. I have yet to reach out to some cool support groups, I’m not quite ready to extend my bubble just yet, but I am getting there. My next hurdle is J starting Kindergarten in the fall of this year!! I. AM. PETRIFIED. I can’t even lie at all!! I just recently got a (gasp) mini (MOM) van and have decided I will be camping out in the back, hiding like some lunatic while he is at school. So far that’s my plan but its possible the principal will now see this blog and be onto me, so I may need to get more creative!

Thank you again for ALL of your support and messages. I’m here for anyone, anytime, EVER, if you have any questions. I don’t know a lot about what I’m doing most of the time but if I can help you, I will. I don’t know if your child has ASD, only someone with the proper training can tell you that. ASD is different for every child, so just listen to your gut. There is no doubt now that J’s diagnosis was 100% accurate, its been nothing but a blessing to have the last piece to that long puzzle we could not figure out. The piece we have knowing and ending that constant “I don’t know” battle is worth it all.

My only advice is exactly what I said to Felicia. “It is scary to make that call, but wondering will ALWAYS be worse then knowing”. If you have concerns, don’t wait. Get answers. The waiting times in our public health system are INSANE, so if you can somehow afford it, go private. I know, I know… it’s a lot of money if you don’t have extended health care like us. But let me tell you, the only regret I have about all of this is not finding out sooner.

~XOXO

~Lisa Marie Johnson

Proud mommy of 3 amazing little humans, wife of one adoring husband and photographer to the BEST clients EVER!!