Sometimes, the isolation of special needs parenting hits me in the gut like a ton of bricks. I find myself longing for meaningful friendships but realize that my life is vastly different from the days of laughing until I cried while watching a movie with my girlfriends or catching a good show. Now, I rarely get to go out. My husband and I have only had ONE NIGHT away from our son together in the last five years. One. Night.
We occasionally get invited to other children's birthday parties but Abram can not and will not handle the noise of places that involve dancing animatronics, loud games, rides or bounce houses. The sounds of children's screams upset him and let's face it - those places are full of high-pitched and shrill shrieks that most adults leave those places with headaches! Things like that overwhelm him, he ends up self-harming because his senses are overwhelmed and we end up leaving feeling defeated. Luckily, now we know his triggers and avoid them as best as possible.
Summers are especially difficult as we are out of our routine and although I try to plan at least one excursion every week and/or invite someone to our home to join us we are almost always inevitably stood up, ignored or have our invitations declined altogether.
Sometimes even going to the park hurts. I know the addiage of "never compare" your child to another but let's face it - EVERYONE does that at one point in time or another. And no special needs parent is comparing their child thinking "why can't my child do that?". I know, I for one am thinking something more like "You have no idea how lucky you are." because they really don't. Sometimes, I want to go shake the mom sitting on the bench with her nose in her phone and tell her "Look at your daughter! She's smaller than my knee is high and she can climb that jungle gym and go down the slide! Do you know how amazing that is?!" I get so tired of people staring at me as I help Abram do the stairs or show him that he can't simply walk off a platform or he could get hurt. I am not a "helicopter parent". What I do is necessary to keep my child safe.
I'm so tired of when I DO get to see people and I try to share what is new in our world or what concerns I have about life in general for Abram at this moment in time that I hear "Oh, all kids do that!". Special needs parents hear this all the time and quite frankly, it's just not nice. For example, my son has just learned to unlock the doors and get out of the house. We will have to put in a more expensive alarm system to alert us to any window or door opening because him getting out of the house could put him in serious harm's way. Not only can he not speak, he has an intellectual disability and no concept of danger. He doesn't know he shouldn't just walk into the pond, in front of a car, into the field or the highway, get into a hot parked car or a neighbor's garage. Although "all kids" may try to get out of the house not all kids face the dangers that my son does.
It's even difficult for us to attempt visiting someone else's home for a party or a brief visit. While most parents get to sit back, enjoy a beverage and chat amongst friends as their children play, I never get to sit down. I don't get to chat. I don't get to enjoy adult time because I have to make sure Abram doesn't fall down the stairs, or run out of their yard, or run into the street, or get into a parked car, or tear apart their house, or get into a closet or drawer and hurt himself. I have to be close to him incase a noise or a loud laugh startles him because he WILL punch himself in the face and/or smack his face into the concrete, the corner of a chair or anything else that is near. But all kids do that, right? I don't get to relax or enjoy time with friends. I am always on guard.
This is why I practically beg people to come and visit us. I don't get out much. I don't get to see many people. Our lives the last 5 years have revolved around endless therapies, countless doctors appointments, hospital visits and more therapy. It's so much easier for people to come to me because our house is safe for Abram. Having people visit him here versus out in the world is so much easier for him because he feels safe and I feel better knowing that I can let him be in the back yard without worrying about him escaping or hurting himself. He can play and be a kid without me having to constantly re-direct him and he in turn doesn't get as frustrated either. It actually gives me the time to have a bit of a laugh and good conversation. But, people are busy and we are a 30 minute drive outside of the city. I realize it takes effort and planning to be able to come and visit us and I am beyond lucky to have the handful of people who will make the drive out to see us. I realize that and I am thankful to my friends who do that for us. You have no idea what it means to me, truly.
Some days are just harder than others. Some days I am reminded of the struggles Abram has to deal with every single day to do simple things like overcoming a texture to be able to eat a food, or tolerate a noise just to be able to enjoy a few hours at the pool. Some days I see the fog come over people's eyes when they just don't even want to hear about how our life is. People tune out. They really do. They always ask to be polite but they never really want to know.
It's just that this life can be so terribly isolating. And sometimes the resentment of what others take for granted sits in my throat like a two ton brick. I wouldn't change Abram for the world. He is who he is. He is stronger than most people I know and he has overcome more than all of the adults I know and he does it with a smile on his face. He is an incredible, sweet and loving little boy who makes my life brighter and made me a better person.
I do my best to be positive. I spend a great deal of time every day writing back to people who need advice just as I write to others who have had similar experiences. Special needs parents have their own little tribe of people who always have one another's backs but we are usually hours, miles or countries apart. It's just that most of us wish our friends and our families would take more time to be with our kids and REALLY get to know them. Most of us wish we didn't feel so isolated. I don't share this to make anyone feel bad or feel guilty. I share this so that people can maybe have a better understanding as to WHY we can't "just bring Abe" to events because it just isn't that easy. I share this so that other parents who also feel isolated know that this IS NORMAL and that it's okay to feel this way.
As usual, tomorrow, we will wake up with a smile on our faces and start the new day like nothing made us feel lonely the day before. Until the next time it catches up with us. I always think that maybe the grief of what could have been never really goes away (at least not for me while my son is still so young) but the good days most definitely outweigh the bad. The people that have come into my life because of Abram have been some of the most fulfilling relationships I have ever had. It's just that sometimes, the isolation of special needs parenting hits me like a ton of bricks. But soon those feelings will be gone, just like that.
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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