Dyer Family Happenings

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

I’m not a fighter — February 23, 2016

I’m not a fighter

I’m not. I absolutely despise it. I will if I’m pushed to, but I try like hell to avoid it. I’m too emotional, I get mad, I cry then I’m pissed that I’m crying and I get mad at myself. It’s just ugly. It takes me an exceptional amount of time to be able to separate my emotional self from my “business mind” self. And unfortunately I have to talk or write out my emotions. I apologize if you end up one of the people I ramble to.

I’m trying to navigate a world I’m still very new to. Special Education. With Leo things were pretty clear, our path to where we are now was up hills, down valleys, around corners and through some pretty big traffic jams, but we are right where we need to be, entering mainstream school in the fall. Max is a big ball of I don’t even know.

Socially he’s reserved at first but when he warms up its on. Outside of that he has so many things that put him on the autism spectrum. Sensory issues, lack of speech, major out busts, spins himself in circles, doesn’t sleep, balance and spatial awareness issues. But he was not diagnosed as on spectrum. I don’t understand. Are social quirks and lack of eye contact that heavily weighed in an evaluation? Are all of the other issues, including slow processing and the inability to form a sentence of even 2 intelligible words not factors? I am so lost.

Do I want to have another child with a diagnosis? If it will help both he and myself then yes. If it will help explain why he screams and won’t wear clothes, why he shakes and looks like hes being stabbed with needles when you put a tshirt- with no tag on it on his body. Why he is having night terrors that last 20-60 minutes and there is nothing to be done. Why he walks around with his hands in fists and asking him to open them throws off all of his balance. Why he can dribble a soccer ball across my back yard but can’t get into the car without running face first into the door every day.

Why even with once a week speech therapy, practicing at home and at Leos school he still can’t say “Mickey”. How I am one of the few people that understands 99% of what he says, but most people need me to translate.  I’m lost. So I am asking for reports and for different evaluations. I’m asking for help because I am terrified that on March 17th, his 3rd birthday and our official first day with no services, that I am not equipped to help him grow.

I’m not borrowing worry or making things bigger than they are. He’s not just a brat, hes frustrated and I am too. But I can tell people that I am. Max can’t. So I’m having to prepare to fight, to fight and ask for full evaluations that we did not receive. To fight to ask for what I know in my heart is right for Max. And my anxiety is off the charts high and I can’t bring it down.

So ready or not here I come. After I get this emotional garbage out of my mind.

Transitions, stimming, workload, changes and walking. Lots and lots of walking. — April 23, 2015

Transitions, stimming, workload, changes and walking. Lots and lots of walking.

Those words pretty much sum up life around here as of late.
I walk, every single day. At least a mile. My body is changing in a great way, I feel better and have lessened my stress. I am also now a month off of my migraine meds and 7 months off of blood pressure meds. I think sunshine and movement are cure-alls for me 🙂

Tomorrow is our first official IEP for Leo and the transition from a Special Ed preschool class to an inclusion preschool class. I don’t have an idea what we are in for. I do know that we all seem to be on the same page and I am hopeful that everything is going to transition smoothly. Prayers are always welcome. 🙂

Max starts ABA 5 mornings a week the beginning of May. I am very hopeful for progress with his communication and behaviors. Again, Prayers very welcome.
With these changes I have to give up my Life Group that I am part of through church for the foreseeable future. Although I did suggest Skyping me into the study 🙂 I know this is again a season of life and change that will not be forever but feels kinda long.

Leos stimming, Maxs lack of words and general stuff around here has been on overdrive. I have made the decision that what gets done (house work wise) gets done. What doesn’t, well that can just wait until tomorrow. Things seem to get done more effortlessly, still not totally sure how that happens, but it does!

I wish I had more to say. I’ll get it together better after tomorrows meeting.
Until then Peace and love 🙂

Steps forward, patience and rational thinking…. — March 18, 2015

Steps forward, patience and rational thinking….

We are embarking on yet another adventure with Leo. In September 2014, we pulled him from public school and started at home ABA therapy. He needed a stronger foundation, he needed clearer words, we needed to fine tune his dealings with sensory overload. In September I sat on my living room floor with the program manager that suggested this course of action because his class wasn’t what he was needing. We set a goal that fall 2015 he would head back to public school hopefully into an inclusion class.

It’s March, and not only are we headed back to public school on April 7th, but we are working on going into mainstream, regular public preschool through the school district. 5 months ahead of where we had hoped and prayed, faster than I had imagined. (when we pulled him from school my heart was heavy, it was such a forward and backward “progression” I wasn’t sure when or if we’d get there, and that was okay as long as he was learning).

Here’s how all of this works: (to the best of my dealings…)
Our school district has multiple levels of early education: Early Headstart (for kiddos starting at age 3, that have special needs), preschool, transitional kinder (they take the first half of a kindergarten year and stretch it across a whole year to get them ready for kinder) and then kinder.
Okay, here’s what has to happen for us- because Leo is registered as a special ed kiddo.

He is re-enrolled and starts back in a special ed classroom.

We have an I.E.P. (individual educational plan) with his teacher (who thank the Lord Almighty is the teacher he originally started with and knows him so well, AND will see his growth), school staff, his ABA tutors and us to talk about transitioning him to being a general ed kid.

Then the decision about where to place him is made.

He is moved to the appropriate classroom and we finish the school year in said classroom and start the fall in the appropriate class.

It’s a process, it took about 50 phone calls. But we are here, and in motion and that is awesome! So I started looking at the criteria for kinder. What they learn, the goals they have to meet or exceed. Um, woah. (for reference http://www.cde.ca.gov/re/cc/documents/alookatkthrugrade6.pdf )
Leo is smart. Very smart. He has trouble with things, like writing. Or rather holding a writing instrument. My mom bought us some books and things to make it fun, but that is probably his biggest struggle at the moment, and a big part of kinder. So we will be working like gang busters on it.

My hope (at the moment, or rather until he totally exceeds my wildest dreams- because he does every time) is that we start the fall in a mainstream preschool, next year he has transitional kinder and we move to kinder when he is 6. This is where I’ve set my goals for him, knowing that there will forever be things we are working on, and factoring in some set backs, but knowing that he is so very capable and has a want to learn that is something kinda fantastic.

We have the resources available to us and people that want him to soar and I couldn’t have asked for anything more for this guy.

Max is making progress with his words, but we are still behind. His advocate is going to ask for ABA services for him, and she thinks if she can get this approved and we start asap that by age 3 everything will be smooth for him. And that makes me so excited. Hopefully we will find out in the next week or so where we are at on school for him.

Max — November 20, 2014

Max

Max is 20 months and now 3 days old.

He tested at 21 months for gross motor skills- the nurse said you can tell he has a big brother to run after, 18 months for fine motor skills, 13 months for receptive language and 11 months for expressive language. He also failed his mChat Autism screen.

What this all means. He is developmentally delayed pretty much across the board.  I knew his language was behind but I didn’t think by this much. It does become more apparent when I see friends kiddos that are the same age and hear what they are saying and realize that Max isn’t even close to matching 50% of their words. The mChat screening isn’t just the child is not meeting these milestones, but the lack of certain “normal” characteristics. There are 20 questions, 5 of which are “crticial” (put the risk factor up high) anything over 3 answers missed out of the twenty- or any two missed in the critical category scores your child as having a risk for being diagnosed at age 3. Max missed 9 total.

The Providers that evaluated him yesterday said they think with early intervention he will hopefully pull his scores up. That it seems like he has more words than we with he does- they are all just sounding the same right now, that maybe with finding his words his aggression and head hitting and screaming will relax and we can see if there is actual concern. His eye contact is good, he seems to understand things some of the time and can follow a simple command every so often.

So now we wait to be assigned an advocate- they are going to try to get him in with Leos so I am only having to have one contact person. And we wait to be placed into a place for therapy.

So I promised I was going to be honest right? Here goes. (I want to preface this entire next section by saying that I am fully aware that my boys are two different beings, that their journeys in life are different but there are some similarities in them right now that shake my core)

Max is almost at the age that Leo regressed. I didn’t realize it at the time, but looking back there was a definite marker for stopped progression in his everything. When  Leo was Maxs age he had eye contact, he had lots of labeling words, he was sweet (still is) his tantrums seemed appropriate for where he was at and what he was doing. Then everything stopped. He lost his eye contact, he stopped gaining words and started making more sounds. Things that he was fine with made him have a full body melt down. he couldn’t function around other kids. We went trough his evaluation-( he was about 26 months old when we found out he couldn’t hear, then eval then tubes). and the same things were said- he’s smart, he failed his mChat,  once his tubes are settled and he can hear with some speech therapy we should be able to bring him above all of his deficits. And he gained words. And when the words came so did other things I wasn’t expecting.

Then came the sensory issues- that he couldn’t tell me what was wrong but he couldn’t and still sometimes can’t function in certain situations. I have had to restrain him more times that I would like to talk about, physically to stop him from throwing himself or something at another person. There are stores we just don’t go to because I can’t handle both of them having a melt down. Leo is strong, and with that when the melt down comes and I have things thrown at me, or I’m being hit, or trying to pick him up it trashes my body. He is 54lbs of tank child, add in flailing and punching and it feels like 400.

Most people don’t see this side of him, because I keep a tight reign on him when we are out or we pretty much only go places I know we can have a chat if we need to and it won’t go into fully hysterics. So what if these same things happen with Max?

How in the world is there enough time to get them where they need to be, to get them both the help they need, to find the places he will feel comfortable, then try to get them both to be comfortable in one anothers comfy places so we can leave the house. How am I going to deal with the looks and the comments from people that don’t understand when they are BOTH having a rough time. How am I going to be able to make them both know how special they are, how it’s okay and we will work hard but sometimes Mommy is going to cry, that sometimes Mommy isn’t going to handle things the right way. That sometimes Mommy isn’t going to know how to help them. How?

I am scared

If I could give advice to mommys-to-be… — November 19, 2014

If I could give advice to mommys-to-be…

I’d say to follow your heart and your mind. They know you better than anyone, any book, any class, anything you can read online. There are things I joke about- but I’m kinda serious (lol) about having a brand new baby, but we all fall into a rhythm, find our stride, fall flat on our face and pick right back up because that’s what we do.

I have to follow my heart more often than not with the boys. All of the charts that tell me how big they are suppose to be were thrown out the window they were born- at 9lb 7oz and 8lb 12oz respectively. The charts that tell me what milestones they should be hitting based on age I had to throw out when they reached certain ones super early and still haven’t met others. But my heart has always known if we were “on track” or not.

With that being said, we are headed back to the Regional Center today, but for Max. I’m pulled in two different directions about this. I know he’s having speech problems- again a child of ours can’t mother freaking talk, but boy oh boy can Joel and I. There are other concerns we are having with him that lead to a talk with our Pediatrician and scheduling with the center. If he needs help and they can start it now, it will be wonderful because I know he will progress so fast. We have very very smart boys. But if he does need help, we have another child that is going to take extra time and patience and I am afraid of how I am going to handle all of this.

I do not believe “God never gives us more than we can handle”, I believe he gives us opportunities to ask him for help, for grace, for love and for the chance to learn. And that  there are totally days where we can’t handle it and those are the days we have to pray and make choices and ask for help- and I know that is one thing I totally need to do more of.

I texted Joel this morning and said if we can make it through this season of life alive, still talking and in one piece I think we will be okay forever. Having two toddlers- to my amazing friend with triplet 2 year olds- you are amazing, and I know you are just living life and walking in the path God placed you but woman I applaud the grace you have with even the toughest days- is hard. Having two toddlers that need extra help with communication is enough to make you want to run away at times.

So to all of my beautiful girlfriends that are in all stages of mommydom, know that your heart is your best guide, but that other mommies are always here with hugs, coffee, shoulders to cry on, high fives, happy dances and listening ears. Know that you are loved, even in your worst moments, that you are so much more than you think you are on a daily basis and that you are doing the best for your family.

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.