Dyer Family Happenings

A.K.A. Mommy needs a place to write!

The day I cancelled 20 O.T. appointments we waited 8 months for — November 14, 2014

The day I cancelled 20 O.T. appointments we waited 8 months for

8 months ago an Occupational Therapist at the school Leo was attending requested that we call the office he worked at for additional O.T. outside of school. Leo has had major sensory issues since I can remember. Sounds, lights and touching certain things would start an epic melt down of inconsolable proportions. The school Leo attended was not in an affluent area of town, not even in a predominately middle class area of town. I doubt any of the kids or their families have jobs that provide medical insurance at an affordable cost. We insure the boys through a state HMO because we cannot afford the cost of insurance through my husbands work for the boys.

I contact the therapists office, I am informed that they do not accept any state insurance, but I can definitely pay cash for services- $400 for the evaluation and $120 per hour for therapy. I told her when I tracked a money tree down I’d think about it and I emailed the office manager with a very heavy heart and frustration at my finger tips that they provide services in the public school system, ask that these children come to their clinic for additional services but don’t take many insurance plans, especially the insurance plans a great deal of the public school children participate with.

So I head to our Pediatrician. He says okay- I’ll send a referral to Childrens Hopsital. Okay- few weeks go by, no call from the hospital clinic. I call. They state that they called and left a message on my cell phone, never happened. I am then told that it is not the schedulers fault if I don’t get messages she leaves on voicemails. huh? I facebook rant about it, and a dear friend of mine, who works with this organization asks me if she can show my facebook thread to her manager. In the interim we are scheduled for a consult, an evaluation 4 months in the future.

As time passes in the 4 month wait, Leo has finished out his first school year, and we have no therapy no school no nothing for the entire summer. Silly Mommy, I thought he would be having O.T. services to get us through the summer. ( We were also waiting for our regional center to approve or deny him for additional services through them- which takes forever after the kiddos turn 3, but it’s what got us in with the ABA services we have). So I went into overdrive. I worked with him on understanding that the noises might hurt his ears, but they wouldn’t hurt his body. That lights might hurt our eyes, but that’s why we have super awesome wicked cool sunglasses, that it is okay. So I bought 6 pairs of sunglasses from ebay for 99 cents a pieces free shipping, and we sat in a chair in our backyard when other houses lawns were being mowed and ambulances drove by and I rocked him and rubbed his back and talked to him and told him that it was all okay.

We got to the evaluation and I feel like I am not being heard, I’m not worried about his fine motor skills, they are coming- slowly but coming, and that is her primary focus. Then she drops the bomb that appointments for treatment are booking way out- 4 months out. Wonderful. And that we have to wait for an insurance authorization before they will put us on the schedule. So again, we wait.

A month goes by, I call- they say they don’t have anything authorized. I call his insurance- they have sent over 3 authorizations, I call the clinic back I am told someone will call me back. And they did- to schedule. FRUSTRATED.

Yesterday was our appointment. We drive out to the hospital, check in and sit. and sit. and sit. The therapist- who never gave me her name- was 30 minutes late to our appointment. She wasn’t warm, she was loud and a bit crass. She acted irritated that I had Max with us, and we are in a room full of new cool swings and blocks and mats and that he wanted to run and play with Leo. She asks if he is in school- because 4 months prior he was, and I tell her no we have in home ABA and clinic ABA. She then tells me that perhaps I didn’t look for the proper class for him to be in through the school district and maybe I should be looking for an autism class that is better suited to his needs to get him back in school….

She is afraid to touch him, is worried he is going to hit her or bite her or knock her over. Then asks if he has seizures, because sometimes he stops and stares into space. I say no, she asks me 3 more times and suggests that I talk to his pediatrician about it. Really? By this time I have pretty much mentally checked out. I’m watching him perform tasks he has mastered through ABA with ease. At the end of the appointment- which she rushed and we only got 45 minutes of, because she was late but had to stay on time for her other clients, she asks what our goals are with O.T. and it hit me

8 months ago I needed O.T. to help my child function, to give me hope that the screaming and melt downs would slow down and lack of communication would start to improve, and we’ve grown past that. Through the right people, teachers, therapy and a lot of hard work and tears as a family- he is thriving, better that I ever had hopes for. Better than the system at Childrens ever could have made him. Because he is amazing. Because we are fortunate to have exactly the help we need for him already in place.

So on our drive home I called and cancelled all future appointments in the hope of the Mom that is where I was 8 months ago doesn’t have to wait 8 months for help with her child.

Major decision day — September 25, 2014

Major decision day

After talking with the director of our ABA services yesterday, another night of crap sleep and Leo telling me “Momma I tiwerd” this morning, I knew something has to give. Just like having to adjust what I need for me to fit into what my family needs from me, Leo needs more structure, less stress and peer role models for positive behaviors. So, for now we are pulling him from school. I’ve never felt confident that his foundation of speech and emotional adaptation was strong enough for a school setting. After being diagnosed at 2 1/2 with “autistic like characteristics” (on my 31st birthday, theres a day I’ll never forget) we are just now at 3 1/2 (and almost my 32nd birthday) getting therapies.

We need to focus on the one on one, the help through transitions, the speech and learning how to play and love on our “mainstream” friends. OT starts in November and if we are in school and ABA and OT there is a great chance of all of us dying.

I kept Leo home this morning, we had a relaxed morning of Disney channel, playing cars with Max, eating a good breakfast, a nap, eating a good lunch and a great day at therapy. His entire mood was different. He was receptive, he was my Leo again. He’s been happy most all day, using full sentences, looking at me and addressing me when he needs something. So this is what has to happen for my guy.

Selfishly I don’t want to leave his class. His teachers have become my cheerleaders, therapists, mentors, my friends. I love these women more than I will EVER be able to put into words. They have given me hope when I felt like there wasn’t any, taught the boys the most amazing songs (I am a pizza anyone?), and loved on Leo even when he was hard to love on.

I know they can’t go far- i have their phone numbers *evil laugh* but the smiles and laughs and hugs will be missed something fierce.

I’ve known in my gut that this is what he needs, and now I can’t wait to see him fly. Leo, the world is all yours buddy- show us what you’ve got! 🙂