Wednesday, November 18, 2015

The Details...

It's been a rough couple of weeks for Dexter but I'm hoping the next few weeks and the new year will bring some clam for him.

School has become increasingly harder. Rather than good days I find myself hoping for just not terrible ones. He's easily over stimulated and agitated and it's difficult to predict what will upset him sometimes. As I mentioned in the previous post, we've started medication for anxiety. I think we are seeing some improvement in being able to let some things go and I think we are seeing less physical aggression at school but he's also been a lot more emotional and crying more which could be him adjusting to it. (Or it could just be Dex being ridiculously broken over the ground being wet and ruining recess?) It takes 6-8 weeks for it to fully kick in so we still have a ways to go before we make any adjustments there.

Good news... we've met with his therapist for the first time and we also went in for the OT evaluation and I feel like both will be really helpful. The therapist is going to start by helping us with dealing with anger and frustration, his need to have things perfect, attention and focus, and the serious depression that is setting in. The OT is going to start by focusing on the sensory issues that are preventing him from being able to function in school... sound, visual stimulation, being touched or bumped in to. We've also worked hard to make changes in his home life too. He regularly stays at Jenny's house on weekends to give him some down time away from everyone. He enjoys the quiet (and let's be honest... the spoiling from Jenny!) so he gets a chance to have a little reset. We've also done some things around the house to give the kids more responsibility and ownership over their things and their space. Dex really likes that sense of control. Combine those changes with everything the school does, and I'm really hoping we will see some better days for Dex.

The bad news... therapy and OT aren't cheap. We found out last week that Shawn's job is switching to a new insurance company so I'm really worried about what will be covered. Not all companies cover OT. Most that do only cover so many appointments a year and we will still have to meet the deductible and pay our portion of it after that is met. Once we meet the allotted number of appointments, it is all out of pocket. Each appointment is $175. We are looking at OT twice a week for a while before cutting it back to once down the road and the therapist once a week. Yeah... if you did that math on that, that's about $2100 a MONTH if it's all paid out of pocket. Depending on what insurance covers, we will be adjusting his therapy plans to balance getting him what he needs with what is financially possible. I'll be doing some research to see if there are any programs that help with these kinds of things but we won't be eligible for anything income based.

The other big change is one that I think most people are now aware of. I'm going back to school. Because Shawn is an employee I can go tuition free. I'm torn on this decision. I worry that this is biting off more than I can chew with all of the time and effort Dex takes. On the other hand though, Dex is likely to need some kind of therapy for quite a while. It will always be important to get him what he needs to be successful, happy and in a good mental state. A second income down the road would make that a lot easier. I'm able to do a lot of my classes online which gives me more control over time management. I've got great support. The hard part for me is going to be figuring out what things I can let slide and what things I can't. Shawn and the kids are already stepping it up and taking over some of the things that I do... Shawn is taking a big role in doing laundry and Parker and Regan will be doing the majority of their own. Meal planning and cooking in advance will be more important too.

I'm sure there will be bumps along the way, but I'm determined to do this. I want to be college educated and I want to have the option of going to work down the road if it is the best choice for my family.

So, there  you have it. The good, the bad and the crazy. Thanks to everyone who thinks about us and provides emotional support. And thanks to all of my friends who are so understanding and love me even though I don't see anyone as much as I'd like to. Life isn't easy but it's much better when you have friends and family who understand.

Also, please note I have no time to proofread and edit this. Enjoy my typos and grammar errors. Just pretend they add to the charm of my post. ;)

Thursday, October 22, 2015

Hope is Not Lost!

So many days, I feel like I'm failing. I don't know how to reach him, how to understand him or make him understand the magic I see in him. Those are the days I feel helpless to be a good mother. Those are the days that I get support and love from my friends and family and from one of the most unlikely of places... his school. 

I've raved about how good the school is with him, but I don't think people understand the extent that they go to for him. He always has extra staff on hand to help him. When he can't handle the sounds in the classroom he's able to work in a private room. When he can't handle the cafeteria he's been known to eat in the counselor's office or even in the principal's office. The office staff knows him because he's worked in their conference room many times and he's comfortable with the people in there and the way they treat him. He has access to sensory objects (things he can hold or squeeze, swings, music, white noise machines, noise canceling headphones.) One of the teachers there personally owns a therapy dog that will now be coming to school daily rather than twice a week so he always has access to a dog to soothe him. She's never even been his teacher but she understand what Phoebe can do for him. Her willingness to share her pet, her family, benefits Dex greatly. They use timers, build in breaks, reward him with lunch time scheduled to coordinate with his sister, lunch time with his first grade teacher, iPad time, opportunities to walk Phoebe. His schedules, rewards and consequences are clearly laid out for him so he's never confused. 

But none of those are the things that really get me. They go beyond even all of that. His meltdowns are handled with love and understanding. I sat at a table today for a meeting with six women, two of whom currently have scratches on their arms from Dexter's meltdowns over the last two days. (And I'm sure that all of them have been targeted at one time or another.) I've personally seen how they respond to his anger. They possess a level of patience and understanding I didn't know that you could have for a child that doesn't belong to you. There wasn't one moment of this behavioral meeting that was negative or left me feeling ashamed. The second that Dex is able to come down from his meltdown, he's met with voices that calmly explain the steps he needs to take to be accountable for his actions and with genuine reassurance that he is ok, he is safe and that they are there to help him find solutions to his bad days and struggles. 

He has a teacher who is willing to text him nights and weekends with funny pictures and messages. His teacher from last year mentors him, loves him, texts him and spends REGULAR time with him still. These women are staff members I can be honest with about his strengths, weaknesses and how crazy I feel. These are women who call and text me daily with successes and happy pictures and that have literally seen me break down and cry because I feel lost and frustrated. 

These are faculty members who clear work spaces to have a private space available to him. People to make arrangements to have windows installed in doors so he can be alone in a room and still be monitored. People who I know have spent their own money because they've found Angry Bird items or little things that they knew he would love to earn as incentives. And oddly, these are staff members who thank me. Always. I'm constantly being thanked for being proactive and cooperative. I find that mind boggling. He's mine. He is my responsibility to care for and love. I should be the one fighting for him and instead they thank me for not fighting against them in their attempts to help him be successful. How backwards is that!?

And lastly, my hope comes from his appointment today with his primary care physician. We are seeking help for his anxiety with medication. I am aware that people will balk at me for medicating my child. To that, I say thank you for your concern, but this is a choice we didn't take lightly, that we will monitor closely and that we feel is absolutely necessary to get him to a place that he is safe for himself and others. To have a child who is talking about not wanting to be alive at this age is something I just won't turn a blind eye too. He often talks about how being "nervous" makes him mad. It's time to take him seriously. If you don't agree with our decisions, that's ok. But know that your choice to tell me won't change anything and is not helpful. I am also happy to say that we FINALLY got our referral for Occupational Therapy! I think OT can help a lot in giving him coping mechanisms and working through things that overwhelm him. And lastly, we will start seeing a therapist next month and should be able to do that on a regular basis.

I really feel that the combination of his incredible staff at school, medication, OT, therapy and the constant love and support that he gets from our family and the friends he loves and considers family, that we can see improvement in the coming months. I know that this will be an ever changing, never ending, learn as we go situation but that's ok. Life, for all of us, is a journey. It's not a destination. None of us is ever fixed, perfect and done. The same is true for Dexter. But I feel like we are working up the hill to a peak rather than living in the low parts like we have been. 

Dexie, we are taking steps. You are never alone. Even when your brain closes in and you want to be left alone in your room to sit in the quiet, know that I am sitting quietly outside your door waiting for when you are ready to let me in. Proud Aspie Mom, baby. Always. 

Broken, Beaten Down and Floundering...

I think the first think I need to do is give a basic update of where Dex is and what's going on. I've posted a lot on FaceBook so everyone has a general idea but here's the deal...

Dexter has now become aware. He will tell you that his brain works differently because he has Aspergers. That knowledge has been incredible! He is able to identify that he doesn't think or feel the way that others do. He understand that sometimes things bother him more than it would other people or that people don't understand that things bother him at all because they don't think like him.

That knowledge has also been devastating. He doesn't feel like he belongs. He's angry that he can't make his brain do the things or feel the things that his heart wants. He fully understands that his outbursts are unacceptable behavior and afterwards he hates his heart for reacting poorly. He's become very depressed going so far as telling us and teachers that he hates his brain and his heart and that he wishes that he would die. My seven year old understands despair. My youngest, my baby, feels that what he has to offer this world is so horrible that he shouldn't be here anymore. It makes him not want to go to school. I've cried until I have no tears left in me because I know that he's an incredible person with a HUGE heart. And I love his brain. I love that he sees the world differently.

His outbursts... oh, those meltdowns. They are becoming so much more frequent and have become physical. He's not just screaming and crying anymore. He's breaking things, throwing things, tearing papers, scratching people, hitting and kicking. Unlike before, it's becoming difficult to predict what will set him off and there is very little that just bothers him. Everything has become a serious meltdown.

Nothing calms him down. No one can. Not music, breathing, quiet, sensory objects... the only thing that works is Tori. Tori isn't allowed at school which is why the outbursts there have gotten so bad. At home, she's always available to him so he can calm down before he gets bad. School isn't like that though. However, as I will cover in my next blog, our FANTASTIC school has allowed me to bring Tori in every time he reaches that point. The trouble is that his anxiety is so bad and his anger get out of control so quickly that he's needed her more and more lately. Yesterday I literally took her in twice. It's gotten to the point that I'm scared to be more than 10 minutes away from the school so I can always be available with Tori. It's running my life. It's hard to schedule things or be with friends. I have no regrets or anger about it at all because more than anything, I want to be there for my kids. I'd happily drop everything to be there for him. But he shouldn't have to live like this. It's not fair to him.

This is some of the frustration and despair that I've been living in lately. There are times that I'm heartbroken and feel that I'm failing. I'm beyond thankful for all of the love and support I have in my family and friends. I'm also incredibly thankful for the staff at Patriot Elementary. Never have I encountered a group of people with so much love, compassion and an honest desire to do WHATEVER is necessary to make a child successful.

My next blog entry will fill you in on today. Today was full of planning, changes and taking steps. There are great things in the works for Dex and I'm excited because for the first time in a long time I feel like there is hope.

Dexter, I'm behind you. And in front of you pushing through and making a path for you to walk. You are one of the lucky ones because we don't have to push anyone out of our way and as we go we keep finding people to help us. When I don't have the answers we need someone else does and people love you.

My Dirty Laundry

My life revolves around dirty laundry. So many kids. So much dirty laundry. It's never ending. But that's not the kind of laundry I'm talking about.

I need to review my blogs, but I think I've talked about it here. I get a lot of people who wonder why I'm so vocal about things that most people try to keep private... mainly that I'm very open about my need for medication for anxiety and depression and about my struggles in parenting a special needs child. The answers to both are easy and it's the same for both. I'm ashamed of neither of them.

Mental health issues are swept under the rug or flat out denied by so many people. People are living miserable lives because they are too ashamed to get the help they need for mental health issues. Too often people try to fight through without the meds or the emotional support they need and many people lose that battle to depression. It's not a matter of selfishness when it comes to suicide. It's about hopelessness and despair. It's about honestly feeling like people would be better off without you. As outsiders we feel that that thought is ridiculous and completely untrue about our loved ones but untreated mental health issues tell them otherwise.

As for being a special needs parent, I'm vocal because I'm tired of social media making it look like everyone has it together but me. Yes, I like Pinterest projects as much as the next mom and yes, I am a pretty organized person but I promise you, I don't always have my shit together. (I know, bad word. Guess what, I'm not perfect. I swear.) Sometimes dinner is cereal. Sometimes my house is a disaster because I decided to play with Nora and ignore the messes. And sometimes (a lot more lately) I'm at a loss for how to figure out and meet the needs of my own son. But I'm not alone in that. There are other great moms and dads out there going through those struggles. I vowed a long time ago that I wouldn't hide behind shame or out of a selfish desire to have others feel that I'm a perfect mom.

Right now, I'm struggling again, Dex is going through a lot right now and I don't have the ability to give him what he needs on my own. Shawn and I and a HUGE team of incredible teachers, administrators, medical professionals, friends and family are working to find the solutions he needs to be happy and successful. I'll go back to blogging for awhile as we work through this. Feel free to follow or share (or ignore) my posts as we work through all of the issues and successes of Dex. I'll try to break things up in to multiple posts so I'm not posting novels but you'll have to forgive me. We all know that I love to talk. And write.

Welcome back to the journey. Hope you enjoy seeing all of my dirty laundry! <3

P.S. Proof reading will be minimal because I lack time. Enjoy my typos and grammar errors. I don't give a hoot! :)