Do We Holding Our Family Back?
I had a friend recently ask me how we are able to do so much as a family and how we got to the point where each and every outing was not a complete disaster. My answer, we still aren’t there. We are no where close to there. In fact, we spent a day at the Lake yesterday where all my husband and I seemed to do is yell at the kids. Sad, I know, but it is the truth.
If you read my article about Restructuring Our Families Core Values you know that I am someone who LOVES adventure. I spent a good part of my life jumping in head first to things and having the time of my life doing so. I was up for almost anything adventure oriented. Dog sledding in Alaska, Snowboarding in Colorado, Horse Wrangling in Wyoming, being a Mountain Guide in Yellow Stone, Snorkeling in the Florida Keys, and the list goes on. Then I had kids, autistic kids, and my world of adventure and fun came crashing down around me.
I spent years in the codependent stages of young children and being tied to the weekly and sometimes daily therapist visits, doctors visits, home therapy I had to learn how to do and being completely unable to leave the house with out a day or two worth of planning packing for any thing that could happen not to mention anxiety through the roof over every outing. I spent so much time regretting my situation that I had a really hard time finding ANY enjoyment being a parent. And as someone who ONLY wanted to be a mom her entire life, this was devastating and completely depressing.
Every night I would sit in my “crying chair” and dread the next day and all that it would include. Nothing seemed to change and it all SUCKED, excuse my language. It was no where near the picture I had in my head of what parenthood would be for MY family. Until I had reality smack me up side the head of what parenting my autistic children meant. Before this realization I could think of nothing more than introducing my children to all the things I loved about exploring the world and helping them build a passion for being outside in nature.
I kept waiting for the “next stage” in my kids life where things would get easier and it never seemed to happen. Everyone kept telling me the next stage is gonna be harder than this one so just try and enjoy the journey. That just made me sick with the thought that “really, this is as good as it’s gonna get??!!” That was a hard pill to swallow. I had a hard time believing that this is what my life is forever so just get used to it. I HAD DREAMS before all this autism stuff invaded my life. I had dreams for myself, my marriage, and my family. Surely this couldn’t be as good as it gets.
One day with tears in my eyes and staring at myself in the mirror I starting thinking maybe I had made a terrible mistake by even wanting to be a mom in the first place. This was awful and i was HATING being a mom. My kids were too hard to handle. This was nothing that I signed up for when we decided to start our family and I really didn’t want to do it anymore.
Then I had a moment of revelation. “WHAT ARE YOU WAITING FOR??!!!” I heard this so loud in my head that I looked around to see if someone was yelling at me from the other room. I heard it a second and third time. Then I ridiculously I answered myself out loud. “We don’t have the extra money for adventure, My kids can’t function out of the house or in a new environment for more than 2 minuets, I can’t give myself that kind of anxiety just because I am bored. There is just NO way we could do any of the things I had envisioned so long ago. Maybe I am just overwhelmed or bored or something.” was my rationalizations.
The thing was I wasn’t bored, I was sinking in the quicksand of my life and I was sinking fast. My situation seemed hopeless and the quicksand of my reality was getting close to pulling me under and drowned me in my own misery with my life. I finally saw that if I didn’t do something THIS was definitely going to be “IT” and I wasn’t ok with that.
Immediately I started to make a list, several list actually. I made an all time must do bucket list of things that I desperately wanted to do with my family. I then made a list of the things I wanted to do with my husband, and then one I wanted just for myself. After I made my list I tucked it away under my pillow for about a week. Every night when the kids went to bed and my husband was off in school or working I pulled out my lists and just stared at them.
I had NO idea what to do with them. How on earth was I gonna be able to do ANY of these things? It was pretty defeating looking at the things on my list and I started to wonder why on earth i had made them in the first place.
The things on the lists seemed so unattainable that it seemed to be more and more depressing. I kept asking myself why had I even written these things down if their was no way for any of them to ever be accomplished? After a week of staring at these lists I gave up and in a fit of anger and uncontrollable tears I crumpled them up and threw them in the trash and just went to bed resolving to give up on each and every dream I ever had for my family, marriage and myself.
I gave into the sorrow that night. I spent hours and hours feeling sorry for myself. I went back and forth wondering what I had gotten myself into and feeling an overwhelming urge to just get in the car and run. What was there really for me hear except heart break, exhaustion and agony? Was there a single positive in my life or nothing more than work? I kept asking myself why was I staying? I had always said that I didn’t want to ever stay in a situation that wasn’t worth the effort and if things go too hard I would walk away and just start all over a different way. I had promised myself that before marriage, responsibility and children…..did it really not apply now? Why was I staying?
I woke up the next morning with kids calling me from their cribs as soon as the sun came up. I felt completely drained in every way from my night of sorrow. I lay in bed listening to the kids cry for me and I knew that there was no one on earth that would care for them the way that I did. I knew I could never walk away and I would never be able to forget them and start a new life. I spent that whole day in a cloud of anger. I did my best to hide how I was feeling from the kids but found them asking me often, “mommy mad?” or “mommy sad?” I went to bed again feeling defeated but still i feel to my knees and begged God to help me find contentment in my lot in life.
That night i dreamt of my Grandmother, my amazing second mother who we lovingly called Gom. I was named after her and me being the only girl in a family of six, we had a special bond for as long as I could remember. I LOVED her with all my heart. I spent some time caring for her in her Elder years before it became necessary for her to go into an “Old Folks Home” as she called it. She was as stubborn as they come and couldn’t stand “living with all those old people” (she was 91 at the time but never considered herself an old person). She passed away about a year later after a fall. It broke my heart but I know she was happy to be reunited with her long time passed away husband in the spirit world.
In my dream that night Gom was really angry with me. She scolded me about the fact that we had gone through so much to have these special kids in the first place. She reminded me that we had been trying for 3 years and went through 6 lost pregnancies. She told me that we were lucky to have children in our life and that we very well could have never been allowed to have had any at all by our Heavenly Father. He saw fit to bless us with these amazing and special spirits and trusted them to our care. She spoke of the fact that once she passed she begged God to be allowed to care for these special spirits before they were allowed, one by one, to be sent to US to be their parents. I told her how hard it was and how I KNEW I couldn’t do it. I was a failure and there was nothing that would change that.
Next came the words that ring in my ears every time times get difficult. “Why do you think you are doing it all alone you stupid child. (It sounds harsh but she said it in a loving way) You have hosts of angles assisting you and they expect you to fight for your family and all that it is. What you need to remember is that You are soooo much more than you can ever comprehend and your children will do amazing things that you can’t even imagine are possible at this time. You are their mother for a reason. It was NO mistake that they were sent to YOU and your husband. Now suck it up and be the mom they NEED you to be. Stop your whining and start loving who you all are as a family because God Doesn’t Make Mistakes!!!!”
She ended with the following, “Go get your lists and find a way to make things happen. You are not stupid, in fact you were blessed with a sound mind and a good voice. Use those things to your benefit, that is what God expects from you and so do I”
The next morning I went back to the trash and pulled the lists back out. They were covered in gross and hardly legible so I rewrote them on new paper. I carefully tucked them into my journal and was unable to think about them for a bit due to therapy and all the rest of the stuff I had to deal with. The lists and my Grandmothers words were constantly on my mind as I went about the day and as I fell asleep each night.
After a week of the crazy that was our life I started praying with a focused intent. I started asking God what my porpoise was in life. After such an amazing and crazy pre kid life was I really destine to JUST be a mom? It seemed so very unfair to allow me to taste of such great and amazing adventures to then doom me to PTA meetings, therapy sessions, rude looks from strangers and everything else I had to deal with. This was a fate worst that just dyeing from the Lupus I was diagnosed with at age 15. Why wasn’t that just the end? Why did it have to get SO much harder?
After a while praying and crying I heard it again, “WHAT ARE YOU WAITING FOR??!!” I wasn’t happy to hear it again because it wasn’t really the answer I had wanted. I wanted God to tell me HOW to do the things on my lists but instead he was telling me to take charge and stop limiting myself and my family. It made NO sense. There was no way I could do any of these things with the family that God gave to me. In my mind it wasn’t fair that he had given me THIS family and expected me to figure out how to have the family I wanted. It didn’t make any sense.
I was really angry about the answer I had once again received for a long few days. I was so angry that I was in “mean mommy mode”, as i called it. I got angrier and angrier. Then one day i realized that if not out loud but in my head I sounded like a whiney little kids saying over and over, “it’s too hard.” That was it. I had never said it’s too hard and given up in my entire life why on earth would I give up on my dreams for my family when family was supposed to be the most important thing in my life?
It was totally the kick in the pants I needed. I had always taken other people saying to me that “You can’t do it” as a challenge to not only “do it” (what ever it was) but to excel at it. I wasn’t going to let anyone tell me I can’t, even myself. I looked at the lists again. Yes, these things would be extremely difficult to do but they are NOT impossible. It would take endless amounts of time to prep and train the kids and husband to do the things on my bucket lists but that wasn’t too much to ask for things that are WORTH doing. After all, anything you have a passion for is worth the effort it takes to master it. I have never thought of life or my accomplishments any other way so why start now.
I new I was a person who loves to just jump into a challenge but I had learned over the past several years that that just isn’t or ever will be the way MY family works. I have to take a good hard look at the things on my bucket lists and be really honest about what it would take to accomplish each one. My lists started to turn into pages at that point, they were more of outlines than actual items on a list. Each item on my original lists now had subcategories on top of goals on top of smaller goals and then beginning and ending points to each step with in the ultimate goal….I know, complicated right, well everything in my life has been complicated so why would it be any different now?
So just as an example one of the items on my family lists is to kayak parts of the Appilachan mountains and hike the Appalachian Trail together as a family. Really Lofty Goal considering I had 4 autistic kids who couldn’t go to the grocery store with out 50 meltdowns in an hour. When I really looked at the goal I realized that we had to start with going to the park for a 1/2 hour with out complete meltdowns. Up to this point we couldn’t go to the park for 3 minuets without some one freaking out and having to leave within 10 minuets due to the fact that things had gotten soooo out of hand that i couldn’t calm anyone anymore. It took a full year for us to get there but we eventually did last a 1/2 hour. (i know how ridiculous this may sound to parents with “typical kids” but it is the truth, just ask my parents.
I kept slowly pushing the kids to do more. We began taking very short walks in the woods behind my parents home. After months of them being comfortable in trees I would take them on a walk by a creek. After many many many wet creek walks and freak outs the kids eventually learned to NOT jump or fall in and they would be comfortable and grounded. Then I introduced then to a kayak. i had them watch me while they played with daddy on the shore. After several times watching mommy be “safe” in her kayak they watched daddy be “safe” and not die when he was in the kayak.
Funny side note, before introducing them to the Kayaks we pushed them a bit too hard when we put them in a row boat with all of us together and tried a very short row around a local small lake and Hunter FLIPPED OUT!!! and i mean really flipped out. Hysterics that we couldn’t control in the middle of this lake. I thought he was going to have a heart attack. It totally ruined any chances we had of getting him near water for a good long while. This is why we had to have them watch mommy and daddy be safe and not drowned by being in a kayak in a lake.
Eventually we were able to put each kid, one at a time, on one of our laps and paddle 2 feet from shore for a few minuets. It took a full summer but we eventually got to the point when we could go 20 feet from shore. Don’t get me wrong, all this was really really hard for me to be patient through but I knew that we were starting to enjoy our time together outside in nature and I was seeing improvement in the kids all around autistic behaviors. I started to see that the kids were improving in all aspects of their lives and that they were beginning to be able to handle a bit more out in society each time we made progress with our ultimate goal of Hiking and kayaking the Appalachian Trail.
We started going camping out in the house so that the kids could start to get comfortable in a tent. This took a long time. They had fun playing in the tent first and over time they could camp in the yard. Then we would go on an overnight camping trip close to home just in case we had to bail and just pack up and come home in the middle of the night. Over the course of several years we are now at the point that we can go on a 3 day camping trip with only a few freak outs. WE are making progress. So much so that the kids are now jumping on a sit on kayak now and paddling alone next to Mommy and Daddy and hiking, slowly, a few hours at near by state parks.
I look back now and marvel on our patients back then on the days now were my kids are begging me to take them for a hike or some kayak time and I truly can’t believe how far we have actually come from the Horrible grocery store trips or Sunday Church attempts from so long ago.
I am astonished with the fact that the kids are finally finding joy in the outdoors and loving the time we spend there. I can actually look at the goal of hiking and kayaking for long distances with a sense of hope that one day in the far off future we could do it. This bucket list goal is actually attainable! The patients that I have had to have and my husband has had to have through the process has been torture but remembering the ultimate goal can most of the time carry us through the disastrous trips and outings that we have to trudge through.
When I tell my family that I am going to pack up for a Photo/camping/kayaking trip they all start to whine and beg to tag along and I have to fight kids out of the car as I am about to drive away. It baffles my mind that not too many years ago we were battling them into the car and into car seats trying to convince them that It was going to be fun and it wasn’t going to kill them to leave the house and their comfort zone. When you consider the extreme anxieties that our children have leaving the house did literally make them feel like they were going to die. Panic attacks, nausea, screaming fits and complete and total freak outs were a normal part of every outing that we attempted in the beginning of our Autism journey. The only reason we forced the kids to do anything outside of the house was that we knew that we had to help them learn to cope with the outside world that scared them so very much.
There was time after time after time where none of it seemed worth the effort. There were so many times I wanted to just give up and become homebound hermits and shut the scary world away and say, “well, at least we tried.” I sat in on endless therapy sessions, asked impossible and baffling questions, and transformed my home into the ultimate McGiver Mommy therapy house because we had NO WAY to afford the equipment that my kids so desperately needed. I did what I took to help my kids feel safe in their home environment and educate myself to be able to be the best Mommy they could ever have. Eventually, over time, the kids learned more and more coping skills and became more and more comfortable pushing themselves and I only had to be there to back them up and hold them tight when the get overwhelmed (this happens a lot).
They still struggle with almost every outing with any kind of a crowd but I am beginning to hear them say things like, “This is really scary but I think I can handle it a bit longer.” or “Mommy, I feel really nervous, How much longer until we can go home?” or even “Mommy, I need a quiet spot or I’m gonna freak out”. These things are GREAT!!! It means that they are learning how to handle their anxieties and autism more every day and that they are learning that no uncomfortable situation is never ending. Eventually all uncomfortable situations will come to an end and they will be home under comfy weighted blankets with soothing music that they love. Eventually, all will be right in their world and they will feel grounded and safe. They have also learned that “Mommy does understand how I am feeling and that makes it all ok.”
We still work tirelessly on learning coping skills that are necessary for everyday life. We still do Ot, sensory therapy and quiet times every 2 hours to keep the kids regulated and grounded. We still do heavy work and dancing time before we leave the house and go anywhere. We still do our very best to set the kids up for success in every why that we possibly can. We expect them to push their anxieties a bit further each time that they can and give as much praise as possible when we see them trying so very hard.
So, what is the point of all this? I will ask you the following: What things are on your bucket lists? Do you think they are unattainable? What are YOU waiting for? Please I beg of you, don’t hold your self back from the passions that make you YOU. Do not ever think that things, ANY THINGs are impossible. And Do Not ever think that anything worth doing isn’t going to require hard work and take time to accomplish. And never forget that ANYTHING is possible!
Make your lists. And never give up on your passions and dreams for your family, your marriage and yourself. It is ALWAYS worth it in the end.