Greetings to all! I just want to drop a quick note and say Happy Spring and Happy Easter to everyone in our autism community. Please take the time to share in the joy of this special day and share what activities you plan to have with your family members with autism today. I know a certain little someone who cant wait to hit the slide outside!
One more thing: We took Angel to church this morning. As soon as we were seated in the pew he started asking us to go home. I was able to get him to settle down and it went better than expected.
How did you spend your Easter Sunday?
Every day when I interact with or observe someone, I always wonder if that person has a disability or not. I don’t know why but I understand how. Each time a thought comes to mind, I wonder how my son will be able to co-exist in mainstream life. Having a child on the autism spectrum has made me more sensitive and aware of others around me and what they may be going through.
Something happened the other day that prompted me to write this: I was heading home after leaving the train station and it was snowing. I observed a man standing outside on the corner yelling out continuously but it sounded like he was asking for help or begging for change. A random guy wearing a baseball jacket, jersey and cap mentioned out loud in an angry tone, “What is his problem? Does he want change?” I replied at random yet purposely,”Maybe he has a disability or something, I don’t know.” In saying this, I thought I was sharing light on a minor situation, only to be shocked by the random guy’s response, “THAT’S NOT MY PROBLEM!” I held my comments and left it alone.
This was very disturbing to me. This clearly identifies a mainstream issue that continues to exist where people who do not have a disability are apathetic to those who may have one that is either visible or undetectable to the naked eye. For this reason, I fear future apathy and discrimination toward my child who one day will grow to adulthood and not necessarily understand why people in their thoughts and actions can react so coldly.
How do you handle instances when people express apathy and intolerance toward people with disabilities?
I envy parents who seem to have it all together. They fight the good fight and they make sure that everyone else knows it. I can advocate for my child and go hard for him when needed. Still self doubt creeps up on me at times and I wonder if I am doing enough for him.
This morning I asked Angel to button his shirt. He tried but could not get the button through the hole. So I modeled it for him. Then we moved onto the next button. He tried and he almost got it. Almost… then he gave up and said, “Push it! Push it!” This is his way of asking me to do it for him. We were pressed for time, so I did it.
Stories like this are what I have shared on social media and here on my blog since I started blogging in 2012. Yet there is always that one parent who will say: “All you need to do is get this gadget. I wrote a social story showing my daughter how to use it and now she can button her shirt independently.” I know these parents mean well but damn.
Maybe I don’t have the money to buy this gadget. Maybe my son could care less about social stories. Maybe I am going through a vulnerable phase and I am looking for support. I am learning that just because our kids share an autism diagnosis that does not mean that our lives are alike. Every kid is different. Every family dynamic is different. Every pocketbook is different. I think as parents we can be more supportive if we listen and do not judge.
Forgive me if I sound salty today but sometimes it can just become too much. My to-do list to get Angel where he needs to be is running off the page. There are not enough hours in the day. Yet I refuse to give up and I will tackle each item one by one on my own time.
I have cut back on writing over the last few months and will continue to do so as I try to decide on the new direction that I want Sailing Autistic Seas to take. When I started this blog, it was a source of therapy. A source of therapy should never be a source of stress. Thanks to everyone who has helped me keep my space as a judgement-free zone.
How do you deal with parents like the one I described in my post?
Please share in the comments. I look forward to hearing from you.
Three years ago today, we were told that Angel is on the autism spectrum. He was four-years old. I remember that day vividly. I remember how I felt and what I said. His autism diagnosis changed my outlook on what it means to be a parent. His autism diagnosis changed everything. His autism diagnosis changed me. Autism acceptance has been a journey for me. I know it is a life-long disability, so we are trying to give Angel the tools he will need to function in spite of his disability.
Angel is my priority, so I avoid the wars on semantics. You will often hear me say “on the autism spectrum,” “with autism,” or even “autistic.” I do not get caught up in autistic adult vs. parent debates. I do not and will not let anyone disparage my efforts as a mother. I realize that life is too short to get caught up. I pick my causes and I go hard for them.
Some days, I am in full advocate mode. My days often involve making calls on his behalf, organizing his paperwork, scheduling meetings and evaluations, and wondering if his dad and I are doing enough. As parents, we are in a constant state of evolution. We see Angel growing up and we are trying to keep up with every change. Even though he is changing, it always brings us joy to see his core personality shine through it all.
On other days, I realize that Angel has to work twice as hard to progress but he does his best. Still, this worries me. As he gets older, the social, communication and behavioral impacts of autism are more noticeable. Autism gives Angel a certain innocence that makes him oblivious to stares and comments that people (including children) make. I see and hear them all and I admit that they bother me. My skin is not thick enough yet. I have to keep reminding myself that it is not about me, as long as he is happy.
There are days when I read through his paperwork and I get the sobering thought that we have a long journey ahead of us. I think of him hitting puberty in a few years and my head spins. Then, I jolt myself into the present and realize that Angel has progressed in so many ways and for that he gets full credit. If anyone asks me what it means to parent a child with autism, I will tell them that it means NEVER GIVING UP!
In honor of the third anniversary of Angel’s autism diagnosis, I am announcing the sale of this Limited Edition T-Shirt (Autism Parenting: Giving Up Is Not An Option). I only have a limited number of these t-shirts available, so reserve your size today. Each t-shirt costs $25 + 5.99 for shipping and handling. Send payment to Kpana Kpoto via Paypal using the e-mail address: firstname.lastname@example.org. Please indicate your preferred size and allow up to two weeks for arrival.
I remember when Angel got his first vaccination. He was two-months old. As the needle pierced his little thigh a slow cry erupted from his mouth. I remember my heart growing heavy and tears welling in my eyes. This must be unconditional love. I felt his pain. Years later, my autistic son is still teaching me many life lessons.
He is teaching me what it means to feel empathy. Angel does not like to see any of us frown or cry. As soon as he notices that we are upset, he will rush over and use his thumb to smooth our furrowed brows. He knows that if my brow is furrowed, then I am not happy. He wants me to be happy. He needs me to be happy. It is a struggle sometimes but I am trying. As Angel defies the myth that people with autism do not feel empathy, my empathy for others has deepened. Let’s just put it this way, I get it.
He is teaching me to approach parenting differently. We all remember the ideas we had for how we would parent our children. Some of our ideas were based on how we were raised and some came from a concentrated effort not to parent the way we were raised. I am constantly challenged when parenting Angel because it is hard for me to know when to let go to foster his independence and when to help him because he really needs me. As I parent Angel, I am learning how precious every milestone is. I am also learning that it could take him longer to achieve certain things but I can never lose faith in him. When it comes to discipline, I struggle with knowing when autism and sensory processing challenges are affecting Angel’s behavior versus when he is just being a kid.
He is teaching me the importance of having faith and putting in work. Angel started receiving Early Intervention services when he was two-years old. We have worked very hard to get him the help he needs. This includes the special education program he is in, the services he receives through the Medicaid waiver, and the recreational programs he attends. Sometimes it is not easy. Sometimes there are tears… his and mine. Sometimes I just want to stay home because going out can be hard. I wonder why he just won’t sit still. I mean I know why he can’t but in those high stressed moments, I wish he just would. Still faith keeps me going. Yes, I may sit out some events because I need to preserve my sanity but faith makes me get him dressed to head out the next time around. Each service and program I get him into illustrates the hard work we have put in to help him grow. His progress comes in baby steps but it comes. I know sometimes doubt simmers below the surface and I wonder if I am doing enough. However, when my Angel hits that milestone we have been praying for, I know that we have to keep going.
What lessons has your child taught you? Please share in the comments. I look forward to hearing from you.