I am fighting to get my child to school these last couple weeks. Money is burning a hole in his pocket, and he doesn’t do well at making good choices. The age does not help, the teen years.

Today I am simply out of ideas and I go about my normal routine, and think in between. I’m trying to figure this out and I just don’t know what to do anymore. It’s not a med issue anymore I don’t think. It’s a money issue. It’s an end of school year issue. It’s a teen and hormone issue. And the fact that I am just plain tired. It’s been an exhausting road up until this point and it’s far from over yet.

I tried to reach out to some school staff for help, ideas and support and find myself in the middle of politics I don’t understand. They say they are there for me yet will not respond with any ideas to help me get this child to school these last 14 days. I am again on my own. Story of the autism road isn’t it. Yep it is. I have to remember that these people I reach out to know about as much as I do on behaviors and autism. It’s all a guessing game. Trial and error until you find something that works. There is no easy road.

Hopefully a light bulb will go off soon for me and I will figure it out. Never giving up hope. That is the autism way.

Spring has finally sprung around here, warmer weather, trees and flowers blooming, and we are finally able to get out of the house and enjoy some time outdoors.

In honor of Mother’s Day and the time of year I picked one of my favorite flowers for this post. I hope all you Mom’s have a fantastic weekend. You deserve it !

*image from Columbia River Images

Why am I feeling like that today? We’ve had a heck of a time here the last 4 days. A few weeks back we upped D’s Namenda because I was seeing anxiety increase. We are currently on a way to high dose of anxiety meds and I was hoping the doc would find a new anxiety med to put D on to help with it. Instead he increased his Namenda and it has caused a mess.

D’s birthday was the trigger as any other holidays are. Then came the fixation. More extreme than I’ve ever seen in his life. So extreme that we went thru a 6 hour straight meltdown of fixation and wanting something now. Trust me when I say ignoring a behavior for 6 hours is darn near impossible to do, I don’t care who you are. The meltdowns were so long and so bad I kept thinking to myself, this is it, I’m gonna have to put him somewhere, but I didn’t give up. I’m not ready to do that yet no matter how BAD it gets.

I was finally able to get D into the doc and he agreed that the Namenda increase was not working right. Yeah I figured that out on my own. My boy’s brain was overloaded like no other. He couldn’t stop thinking, he was confused like I’ve never seen before. I had to give him emergency only ativan to keep him calm for a few days until we could get into the doc. It didn’t even help. That’s how bad it was.

So we went back to the original dose of Namenda and increased his Risperdol and now we wait to see if it works. Still waiting. Today was another rough day.

Don’t get me wrong on the Namenda, it has been a life saver for us. He’s been on this low dose for a year now and I’ve seen some remarkable things come from him. He just doesn’t need anymore, obviously. It’s his anxiety. It’s always been high. Over the top high and that is what I need to get under control with him.

More research and back to the drawing board for me while we try to get back to where we were a week ago. I was actually suppose to be on vacation this month, tying up loose ends and getting ready for summer, but….well, duty calls. That’s the job of an autism parent. It is what it is.

We have a summer school program for the elementary kids, that is nice though it only runs three days a week for four weeks. We have some camp opportunities for special needs kids in our area as well, to help keep the kids busy. I also learned of a summer program for socialization and getting out in the community for the teen with other special needs peers. It runs most of the summer on a Monday thru Friday schedule. The teen is used to having summer’s off so I’m not sure how well it’s going to go, but I am trying to transition him from being a kid and playing in the summer to a work type schedule since he’s almost an adult. Fun time is over when you grow up, isn’t it? Yep. And trying to explain that to a special needs kid is very difficult.

Hopefully we will be able to keep the boys entertained this summer and on task this summer with any major incidents.

We have a reward in place on Friday for going to school all week. It’s 2 6pk of 4oz bottled coke. That is 48fl oz right? There is a new product out that my son likes better, bottled Pepsi. It comes in a 4 pk of 8oz bottles. If  we bought 2 pks of that it would equal 64fl oz right? More product than the other and it’s cheaper. That’s a deal I think. Well my son thinks because there is less bottles he should be getting 3pks. Yep. It has created an argument and a huge fight.  That’s how autism works.

This is my word math problem for the day.  Please don’t lecture me about all the pop either. Thank ABA and positive reinforcement for that one. Using highly motivating rewards cause serious problems around here. I haven’t done this reward concept with John. It has done nothing for us but backfire in my face over and over again. I wish we never would have started it with D.

Where the heck is easy street, btw???

*image from chemistry2011.org

My uncle is having some issues right now, that’s what’s making me think of this. I don’t know my uncle’s true diagnosis but I can tell you that he is MR for sure and I see a lot of my uncle in my 16yr old. D does so many things that remind me of him. Very similar. It wouldn’t surprise me one bit if my uncle was actually an undiagnosed autistic. I mean lets face it, back when he was a kid, autism wasn’t heard of as much and people didn’t understand it the way they do today.

These days I see my uncle lost, lonely, tired of being told what to do by his support people, and bored. I watch him many times get fixated on things to the point of making people angry with him. I see the people around him working hard to provide a quantity of life but there is no quality of life with him. I can’t do anything for him because I am just his niece. There are people above me on the chain and his life is out of my hands. Some days it makes me sad. I watch people expect this man to be a part of their world and get it together, but not once have I seen people trying to get into his world to understand him. When I try to help I get judged too. Though it doesn’t bother me too much, remember I got two disabled kids so I’m used to getting judged. It all makes me understand my grandma and what she went through raising him, so much more.

What really caught my attention yesterday is someone saying my uncle is so out of hand it’s time to put him in a home. At least the support people assigned to him had enough sense to make an appointment to get his meds checked. That’s the first thing I do with the kids when things are bad. Just did it yesterday as a matter of fact.

It also made me think about my own kids. What’s going to happen to them when I’m not here anymore? Are they going to be expected to get with the program like my uncle? Are family members and support people going to understand my kids like me? It’s really scary to think about and I try not to too much but the fact of the matter is some day I won’t be here. That’s why I work so hard now with my kids. Because there is no body like Mom, and no one will ever understand my children like I do. All I can do is work hard to get them as independent as I can and work hard to educate the people around my kids so that maybe their life won’t be so difficult when I’m gone. A lot of prayers on this subject doesn’t hurt either. I have to have faith that God will plant the seed with these people that don’t understand and help and guide them to the education of these disabled people that they need.

*image from buttonsandmore.com

I remember one of our ABA therapists drawing my attention to this type of behavior back in 2010 during an ABA session. While I was trying to talk to the therapist, J kept asking questions, needing my assistance, doing whatever he could to draw my attention to him and away from the therapist. The same thing is happening this weekend and though I’m sure my company doesn’t mind, it’s bothering me.

It’s making me wonder about this behavior. Why are they doing it? If this person wasn’t here, they would both be in their rooms, doing their own thing and all would be well. It’s not just one child doing it, they both are.

I’m thinking this behavior may be my fault. I have devoted and sacrificed my life for these kids. I’ve not had a social life in I don’t know how long. I quit working outside the home when J was about a year old. I have been here for these kids day in and day out for whatever they have needed. I am their rock. All these aspects are a great way to be, so I thought until today. I’m wondering if I made a mistake in doing that. In not having my own life away from the boys. Not going out on occasion. Not having social functions at the house, or taking the boys to social functions out in the community. Why didn’t I do those things? Well let’s face it, a trip to Walmart is a huge struggle with a lot of drama most of the time. I did the pick and choose your battle thing and chose seclusion I guess.

I don’t know maybe I’m wrong in thinking this way. The fact of the matter is I was so looking forward to this visit and it is good, but it’s been a challenge with the boys. I don’t want the boys to be like that. I want them to accept who Mom interacts with. I don’t want them to feel threatened or fear that Mom isn’t showing them attention and giving it to someone else. It’s almost like they are over protective of me as much as I am of them.

So that’s what’s on my mind this evening. I can’t change the past or what I’ve done in raising the kids, but I can change the present and the future. Taking more time for myself. Including the kids in more activities and not worry about what others think or if a meltdown occurs. Just deal with it if it happens. Maybe over time the boys will get into routine with this way of life and it will be comfortable to them, not feel awkward or threatening.

I had a life before the boys were born and this person who came to visit is very close to me. We were very close years ago. I want the boys to be comfortable with their mom and who she is as person. She is more than just mom. Maybe that is a concept that’s too hard for the boys to grasp? Am I wrong in asking them to do that? I don’t know. Some things to think about.

No matter what I love my boys with all my heart and I will always be there for them. That is my role as their mother and it too is also a part of who I am. Wouldn’t change that for the world. Have I mentioned lately how challenging it is to be a special needs parent? Rewarding yet challenging. I just don’t want to lose myself along this journey. I deserve that much I think.

*image from Expression Through Depression

He got a hold of a penny yesterday and accidentally swallowed it. It was stuck in his throat and he immediately tried to vomit with no luck. He kept pointing at his throat but couldn’t express what had happened. I got him in the car and started to proceed to our urgent care facility and about two blocks down the road I noticed him starting to wheeze. I turned around and went back to the house and dialed 911. I wasn’t sure that I could get him to the doc without his airway shutting down and with the lung issues he already has I wasn’t taking any chances.

Firetruck arrived first. He kinda liked that, wanted to ride on it. Then came the ambulance and J was done. Anxiety had set in. The EMT’s checked his vitals and he was passing air okay and able to talk so that was good news, but he was wheezing. He was stable enough that we decided to not use the ambulance and have me transport him to ER myself to avoid some trauma and drama.

Once we got settled in the ER they did the first X-ray and a penny was stuck in his esophagus. It wasn’t blocking airflow but it also was not in a good place to be. It needed to pass further into his stomach to be safe. We didn’t know exactly what we were dealing with until that first X-ray because J is limited on his communication and we were just getting bits and pieces to the puzzle. I have to admit though he did a fantastic job of verbalizing what happened. This is coming from a kid who barely talked a couple of years ago. Mom was very very proud of him.

Our next step was to try and move that penny down into the stomach without having to go in and remove it. Removing it would have been the second option if moving it down had failed. We had him drink some water first. Quite a bit for him. He drank it all down and then vomited. No penny surfaced.

Next was some calming medicine. J has anxiety and being in an Emergency Room caused more anxiety and the doctors were thinking if they could get him to relax it might move the object better. That called for some sedation medicine up the nose. Versed. It took four of us to hold him down while one of the nurses administered the med from a syringe into his nostrils. Even with four people, J still managed to get a foot loose and kick one of the nurses in the chest hard. She was okay, but I felt bad. Yet, it is what it is. It was a tough situation. Now it was time to wait. We had to let the med kick in for about an hour and a half. J dosing in and out and me there by his side watching the clock move really really slow.

Time passed and they did another x-ray to see where things were at. The penny had moved and was in a fairly safe place so they were comfortable with us going home at that point and letting that penny pass naturally. We avoided the alternative removal and that was great news ! The entire ordeal lasted about 4 hours. We got our release papers and were on our way and J was a very happy kid that he was going home.

He’s doing much better this morning. I hope maybe he got something out of this experience. At the very least to not put coins in your mouth anymore. I don’t know, I guess time will tell.