Dyer Family Happenings

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

Never did I ever… — April 11, 2017

Never did I ever…

Never did I ever think I would be a wife and mother.

Never did I ever think I would love as hard as I have every single day for the last 6 years and 63 days.

Never did I ever think I would be a special needs parent.

Never did I ever understand what an IEP was, until 3 years ago.

Never did I ever want strangers involved in my world.

Never did I ever think that schedules and therapy and specialists would be a huge part of our lives.

Never did I ever think 90% of what I cook for my children would be tan.

Never did I ever think that I would have to hear the word “Autism” attached to my children

Never did I ever think I would have to fight for the help I need.

Never did I ever think this would be life.

Never did I ever know love, patience, laughter, togetherness, faith, persistence, emotions and want as I do now.

Never did I ever see myself as an advocate for those who struggle with words, and noises and light and smells and being homeless and having nothing

Never did I ever think but I get to live such a beautifully imperfectly perfect life and for that I am so very thankful.

Seasons of change, not just summer to fall — October 26, 2015

Seasons of change, not just summer to fall

California is finally getting the memo that it is in fact autumn. It’s still a smidge confused but the brisk mornings are a nice way to start days. But weather and month changes aren’t the only things that are changing around here. Surprise surprise. (One day all I’ll write is- everyone is alive and nothing has changed and that might come in about 35 years….)

Leo is still majorly rocking preschool. His questions, conversations and general talking is loud and never ending but I love it. Even when it’s 5am and I don’t feel well. He tells us when he’s excited and happy and angry and sad, but never when he’s tired. ­čÖé admitting that at 4 would for sure be the end of the world. Wednesday we have his first Parent Teacher conference. I can’t wait to hear all about how he’s doing. With all of the advances he’s making, regulating (stimming) has become more pronounced. You can tell it’s totally involuntary movements and it’s amazing how it helps him get his words out when he’s excited or calm him when he’s upset. I’m proud of him. He’s understanding his own body and that is HUGE.

Max is talking up a storm. His fits are more appropriate to being 2 or tired or a boy that just wants to throw pumpkins. His therapy is changing totally. We are actually backing out of ABA and he will be having more focused therapy to work more on speech and O.T. for some super testy sensory issues. I get one on one time with him to talk and read and sing and play with playdough. I love it. I’m proud of how he wants to be a big boy. He wants to go to school with Leo. Wednesdays are library day and he just loves it. It’s slowly coming together for our boys.

Last Wednesday was a hard day. Max spiked a fever and had a seizure. It was definitely the scariest thing I’ve ever seen. He was purple from not breathing, he was unconscious for way too long and when he finally came too, he wasn’t Max. It was like the sparkle in his eyes was gone. It freaked me out. I just wanted, no I needed him to say “momma”. If he said that somehow I thought it would all be okay. He slept most of Wednesday after we got home from the hospital. And Thursday morning it was like watching a miracle unfold.

He woke up, happy camper style, walked into the living room and started talking. 2-3 word sentences. Words he’d never said before. Rewind to Wednesday night when my husband asked me very honestly “when enough is enough for our boys”. They have had so many hurdles already and we just need them to be able to be. I feel like God hear him. This was his way of saying, lemme show you that things are going to be okay.

We had already made the decision to pull him from ABA, but his communication becoming so much better since Thursday made it easier for me to confidently remove him from ABA services this morning. Because I felt God saying, you’ve got this because I’ve got you. And I am so thankful. I am thankful for what ABA did to help our boys, I am thankful for my husbands teamwork with raising our children, I am thankful for the tutors that are more like family and I am thankful that when it feels like we can’t handle another thing that God tells me, I got this. Because you put your faith in me.

I know there are lots of people that don’t believe or are skeptics about faith, but I’ve gotta tell you in my shoes it’s a real deal.

Now I’m looking forward to the next season and what it will bring to my family.

Week #2, here we go — August 24, 2015

Week #2, here we go

Leo had a great first week at school, Max had a great first week without his big Bro by his side, Mommy had a rough week but pulled through.

Things I noticed from this past week:

Leo’s focus and listening has already improved.

He has been trying new foods.

He loves his teachers.

His behaviors come out when he’s exhausted.

Leo is 4 1/2 years old and has school and therapy 6 hours a day. 6 HOURS A DAY.┬á Today I make the phone call to the regional center to discuss our funding issues if I cut him back on therapy or how hard it would be to get it back if I dropped it all together. He needs down time, he needs to be a kid and he hasn’t ever really had a chance to do that. And I’m going to say it- it’s not fair. Yeah, it’s not.

We can’t decide to go see a movie or go to lunch or sit in our underwear in a sheet fort after school because he is always being pushed to learn. And he’s done better with it than I would. So today I get a few more answers, today I start the process of either backing out of or totally dropping ABA. I love ABA, it’s making my children better, but the school he’s in is incorporating ABA into his mornings and I’m good with it.

More to come.

Happy Week everyone.

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┬ároom 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┬áseizures, because sometimes he stops and stares into space.┬áI 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.