I’m going to come right out and say it… Autism is a lonely road. Sure we talk about our “tribe” and we do have support but there are many days where we feel the difference. We feel the loneliness. We feel the heartache.. And you won’t hear us talk about that because our focus is elsewhere, but it is still there.
First, I want to take a walk with a “typical” family. You welcome your lil bundle of joy into the world and immediately are met with all of these great parent and me classes. All these other parents on the same path as you. You enroll your baby in everything possible and your days are filled to the brim. As your child gets older, you might have them join a dance class, little league or learn a musical instrument. Your child is now in school and making friends (as are you with all of the other parents). You have probably created a “network” of these parents. You may carpool and have way too many birthday parties to attend. There are sleepovers and pizza nights and you may see your kids less and less as their friends are “much cooler”.
Now, let’s take a walk with a special needs family. Although you may have had every intention of joining the parent and me classes, you may have already noticed some differences in your child. Depending on what these differences are, you may still try and join some of these. You walk away from them wondering why your child is so different than the other children. Why all the kids flock together and yours is playing in the corner. As your child ages (and you probably have a diagnosis by now), it is hard to ignore the differences between your child and their peers. If you were involved in anything, you probably had to “drop out” and look for those organizations that can accommodate your child’s needs. This may take some time (since there aren’t that many and they are expensive or far from you) and you might be overwhelmed with the challenges at home and give up.
Your child eventually starts school. They are different and don’t make friends that easy. Birthday invites don’t come too often (if at all). Other parents may look the other way or feel uncomfortable. You don’t have as many things in common with these parents anymore so that is okay with you. You are so busy addressing your child’s needs that you barely have time for anything. All of your child’s therapies keep you busy and are expensive. You may have enrolled your child in an adaptive sport but the parents are all focused on their own child and rarely have the time to socialize at these events.
You may try and give a “Special Needs Moms” group a try. You may be discouraged by all of the stories that are worse than yours. While there is camaraderie and sharing, there is also this underlying pessimism. Will my child be the same as hers? Oh dear, is that what I have to look forward to? You may decide these groups are not for you and instead focus your time on what your child needs. You may spend hours looking for things your child can do to occupy their time (especially during the summer).
You see, you are different by this point. You have probably been through hell and back with your child (either physically or mentally). You have changed and your priorities have changed. What used to be important is now the least of your worries on a given day.
You try and lean on your family members. But some of them have issues with the needs of your family. They may take offense when you miss an event (even when it is out of your control). They may not agree with the diagnosis, may just think you need to discipline your child more. You may get tired of the negative comments, of the pressure to be “normal”, of how tiring the events become for you. These relationships fade, may disappear completely. There may be arguments and things said that will take years to recover from.
You begin to realize sometimes family is not always by blood. You lean to your friends. Some of these friends may have started families of their own. You are both on the same page until things start to divide. Your child is so much different than theirs. Whereas they can take their kid anywhere, you have to start declining invites. After too many declines, the invites start to slow down, maybe even disappear. You find when you do try and hang out they get tired of hearing your endless problems. They can’t relate and can say “I can only imagine” so many times. They can eventually leave their child with a sitter and go for brunch while you do not have that luxury.
At this point, you end up spending more time with teachers and therapists than family and friends. There are some people that you see almost every day and they understand you on a deeper level than anyone because they have taken care of your child. They know how difficult it can be. But in the end these people have a job, have a life and will move on at some point. They get promotions or a better job. They may start their own family and you are left behind. You feel excitement for them but also selfishly hate it. Now you have to meet new people, train new people, everything starts over.
But let me tell you a secret… All of these ups and downs with relationships actually enables us to find the TRUE ones. Because throughout all of this, there have been shining lights in the dark. There have been those family members, those friends, those teachers, those therapists that have become your FAMILY. Your TRIBE. They have been there in the good and the bad and are still there. They may have seen the truly horrendous and are STILL THERE.
You see, we don’t have a lot of time. All of our focus and time MUST be on our own child, on our own family. We need positivity, we need patience, we need understanding, we need forgiveness, we need to break the social rules. We are not that great at being family or friends. We are selfish, we are tired, we are unfiltered, we are unapologetic. And those that see through all of that to our true selves are the real winners in life. You have made such a difference in our lives. You have made hard days better. You make all of this just a bit more manageable. You make us feel more normal. You are there for us.
We may never say how much you mean to us. We may be too wrapped up to see your own dark days but bare with us. We do come up for air sometimes and you are first on our minds. You have a piece of our hearts until the day we die.
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Tilted Axis 