Update for the Past Year

It’s been a long time (nearly an entire year!) since I’ve blogged.  So many factors came into play this past year, as well as a fair amount of depression, that kept me from making the time to blog.  I started an Etsy business making custom vinyl products, which I opened up in December 2014, and that has helped me fill any spare time I may have in between the constant supervision of Brian.  I really enjoy having something that is all mine, but it comes at a price of little sleep during heavy orders.  Still, it’s worth it to own my own business and be in control of something.  After typing that sentence, I realize that is one of the things I love most about being self-employed.  This is the ONE thing in my entire life that I am completely in control of as so many other things around me spin out of control.

Spinning out of control…..I feel like that adequately sums up my life for the past year or more.  I forgot how cathartic blogging was and I already feel like a huge weight is sliding off my shoulders.  This past year has been TOUGH!  It’s been extremely rewarding in regards to the INCREDIBLE PROGRESS Brian has made, but it’s also been so incredibly stressful having little time for myself.  During this past school year, I decided to pull Brian out of school and homeschool him.  There were so many reasons for doing this, but one of the main reasons was that he went to school and almost every single day he would have major behaviors.  He would cry, kick, hit, pull hair  and scream because he didn’t want to do the calendar or some other activity.  At one point, he head butted a therapist and busted her nose.  He was agitated, non-compliant, aggressive and hostile so many times throughout the day, that I’m doubtful he was learning and retaining a lot during this time.  He was going to a school specifically for autistic children that used ABA to help the children learn and deal with behaviors that were both good and bad.  Before anyone goes on an “ABA is the absolute worst thing you can use with a child on the autism spectrum”, or “it’s abuse”, or “your child will hate you for forcing him to endure ABA”, I want to say one very powerful thing.  ABA works for Brian.  I want to say that again so you can grasp that before attacking.  ABA works for Brian.  He enjoys working with his ABA therapist.  He is learning so many things through her, and his excitement is clearly visible as he learns and masters tasks.  It is the only scientifically proven treatment for autism, and thankfully our insurance pays for ABA.  There are so many families that have no help in regards to their insurance coverage for therapies for their children.

Without being able to see the future, I often wonder if I’m making the right choices.  As a parent, I’m sure we all do.  We all have our battles.  We all have huge decisions to make for our children as they reach different milestones, grade levels, etc.  Do we always make the right decisions?  Of course not.  Do we always make the best decision with the information laid out before us, weighing our different options and going through different outcomes in our head?  I think we all like to think so, and for the most part I think we do.  Making those decisions for our children usually involves long discussions with our child to see how they feel or think about a certain circumstance.  Imagine having that option ripped away from you because your child can’t talk or communicate their feelings with you!  Imagine reading the reports from your child’s therapist detailing your child’s day and behaviors they struggled with throughout that day.  Imagine not being able to sit down at the kitchen table and discuss the day with your child.  It’s hard!  It hurts!  It’s unfair!

That’s our life.  That’s our struggle.

Everyone has different struggles in life, but this happens to be ours.  It’s painful, unbearable at times, depressing, heart-wrenching, stressful, exhausting, and feels hopeless at times.  Some of you out there know what I’m talking about because your child is non-verbal too.  Some of you know what I’m talking about because your child is aggressive too.  Some of you know what I’m talking about because your child smeared poop and wasn’t potty trained until double digits.  Some of you know what I’m talking about because your child has anxiety and OCD so badly that they can’t function without medication, even with medication at high doses they still struggle constantly.  Some of you know what I’m talking about because your child is on so much medication that you have to have a check list on the side of your refrigerator with strength/dose/time because 8 medications is too much to remember in your head.  Some of you know what I’m talking about because you can’t go to new places without your child crying and aggressing you until you leave.  Some of you know what I’m talking about because you too get your hair ripped out of your head, kicked in the face, punched in the back, and hit all because your child couldn’t go outside and swing “right then”!  I get it!  How many people can actually say they “get it” when you tell them about the daily struggles of raising a special needs child?  In my life, very few.  Other special needs parents are the people who truly understand the life you’re living.  We feel so alone and isolated, but if we just reach out to other special needs parents that are living similar lives, we get a glimpse of acceptance and hope.  Hope for the future.  Hope for our children.  Acceptance of our children.  Reaching out is hard!  It’s been hard for me and I’ve isolated myself which has compounded my depression.  Other special needs moms have been incredible in showing they care, but I’m honestly so incredibly exhausted every day that talking on the phone is one of the last things I want to do.  Play dates are wonderful too, but those too seem like another obstacle to tackle when your day has been so incredibly long, stressful and tiring. I’m trying to do better, but Brian’s increased aggression has put play dates to a stall for now.

Depression makes me eat and my weight has skyrocketed to unhealthy proportions. It is absolutely shocking to see how much weight I’ve gained this past year.  I know people are shocked when they see me, especially if they haven’t seen me in a long time.  I’m huge.  I feel miserable.  I think of my weight constantly.  CONSTANTLY!  Anyone that is overweight understands this.  The vicious cycle of constantly thinking of your weight to the point of becoming more depressed, then eating because your depressed, being depressed that you ate, and eating more because your depressed.  I’ve recently started going back to the gym and luckily I have my stepmom motivating me to go to the classes she goes to which requires waking up at 4:30am Monday-Friday.  3 days of spinning class and 2 days of yoga.  I hate yoga, but it’s starting to grow on me.  Exercising is helping so much!!!  Celexa and Elavil do too…..ha! Over two weeks now and it’s getting a little easier.  Of course the hubby has to go TDY next week, so no spin or yoga for me.  It’s funny how I’m so disappointed by the thought of missing the gym for an entire week while he’s gone.  That’s a good thing! :)

Now that I’ve put it out there that I’m still struggling greatly with my depression, I want to talk about all the amazing things that have happened since I pulled him out of school.  His anxiety has GREATLY decreased.  We had no idea how much anxiety he had at school until he started getting in-home ABA.  What a DRASTIC difference!  He still struggles with aggression, non-compliance, exhaustion (from his cyclic vomiting syndrome, medication, etc) and other issues, but he has calmed down so much and has learned so much this year.  He has become much more compliant with me, he’s almost 100% potty trained all the time, he’s using his iPad and Proloquo2Go app to communicate with me, and he has worked amazingly with his Board Certified Behavior Analyst (BCBA).  His BCBA has been working on teaching him calming techniques and she has written so many social stories for him and they all have worked so well.  While we don’t know of any scientific evidence of social stories working with special needs children, they are like magic with Brian.  For instance, never in a million years would I have thought he’d willingly let me give him a daily growth hormone injection, but after Amy made a social story for him regarding the GH injection and why he needed to get it, he has been compliant every single time for the past 2 months.  She called the GH his “rocket fuel” and wrote a social story regarding the correlation between a rocket and rocket fuel, and Brian and his GH injection.  Brilliant!

Brian’s BCBA was able to go with me to Brian’s dental appointments, to talk to his Psychiatrist about his behaviors, and to the doctor.  I can’t even explain how helpful this was for me.  This!  This is what really matters!  Being able to successfully take your child to a doctor’s appointment without total destruction of property…..Being able to go inside a shoe store without your child pulling out every box of shoes, opening the lids, and throwing shoes all around the store……Being able to shop at the grocery store.  These things are what is going to help us as parents as our children grow older, stronger and into much larger adults that can no longer be picked up and carried about of a store.

While so much progress has been made this past year, there has been a sweet but extremely hard new behavior that has erupted.  Bri is almost 100% dependent on me.  He wants me with him for EVERYTHING!  He pushes his dad away whenever he tries to step in and give me some relief.  Now that he’s learning to communicate with his iPad, he always follows every request with “mom,” because he wants me to do everything for and with him.  He has extreme separation anxiety that leaves him sobbing for 30 minutes or more after I leave, almost to the point of dry heaving.  Due to being a military family, Brian’s dad has deployed 3 separate times and missed 3 entire years of his life.  Then all the schools he attends, TDYs, etc., adds up to even more time away from Brian.  I have been the one person that has been by his side through almost every single day, procedure, test, etc.  Now that he spends the entire day with me, it has made his dependency on me 100 times worse.  While this is really hard on me, I imagine it must be heartbreaking for his dad to watch every day as Brian pushes him away.  The good thing is that they do have some special things they do together and he really does love his daddy too.

While I want to continue writing tonight, I’m exhausted from getting up at 4:30am this morning.

I have decided to make blogging a priority again and hopefully it can help me work through my own anxiety and depression by sharing our story with others.

I’ll leave you with two sweet pictures of Bri.  These were taken after a very stressful time for Brian when he was struggling with his tears and aggression.  It was a beautiful aftermath that reminded me just how truly lucky I am to be this boy’s mama.  Even with all of the challenges faced every single day, I know how lucky we both are to have one another. 

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