April is a special month. Everyone starts to feel like the end of winter and the beginning of something new is fast upon us. A new fresh start.
It is also Autism (acceptance, awareness, education) Month. It's important. Not just to a bunch of families living it, but to the world. I can not share the journey of everyone but I can share ours. Our journey has been filled in 6 years with judging stares, snide comments and nonacceptance. And I know, you look at my kid and you hear our stories and think NO WAY IS THAT FAMILY IMPACTED BY AUTISM.
The thing about autism is that each and every child is impacted differently. We all may share some similarities, some experiences may sound or look the same at some point but how our children behave, learn, grow, experience, communicate is all different. Our experiences and journey is often marked by crazy meltdowns, serious hazards and hilarious accidents that most just have no idea of how to manage. (Truth be told, none of us do either, but we have to figure them out). So April is Autism Month. What matters is that we accept the differences in families and teach our children to do the same.
The short story for our family... Our beautiful child was adopted. We arrived at the hospital 20 minutes after his beautiful birth mom delivered him and we have been his ever since. I was so excited to be a mom, after waiting so many years and trying so many things to have a family. I held him, carried him, spoiled him silly and never wondered or thought he was anything less than the perfect baby. He was my gift and a miracle ~ nothing else mattered.
Because I was so clever, I taught him sign as a baby so verbal language delays never dawned on me ~ he spoke with sign and was very smart about it. Other situations and experiences started to make me wonder about things. Weird things. We failed at play dates with peers because he had no fear and was physically able to do daring things. He was "rough" and lacked empathy resulting in moms not wanting their child to play with us. He never looked at people directly (avoided eye contact). He was a runner and would simply take off down the street (or in it). We started to notice his lack of understanding of sarcasm, and his literal approach to the world. I started to build our home life in a way that protected and secluded us so that we could play and be safe. The outside world did not matter.
Our pediatrician repeatedly told me he was "normal" and I was the high strung one. Yet our experiences were becoming more and more dangerous and frightening. We were living in a fortress (locks & alarms because he ran), we had no social interactions, we could not take him shopping or to "normal" activities without meltdowns of wild proportions. I was exhausted and terrified. And honest in those early days I cleaned a mountain of poop off everything because it was the "thing" he did. When he was 3 and I called poison control 2 times in a week, taking him to the hospital each time, we knew we needed other help. It was the straw that sent me in search of other answers.
I found some answers and help at a pediatric therapy center. I walked in crying and they helped. We found out quickly that our son has Sensory Processing Disorder. It gave us some relief. It is a lifted burden to have someone else notice your child is different. We have been going to occupational therapy for 3 years now and it helps. With them we first learned how to help with sensory stuff and then they helped with his ability to learn. Therapy saved us! It also gave us the ability to call the sensory needs to see past them to what came next.
When he entered kindergarten we knew. We knew he played differently, had trouble focusing, was delayed. We sought help from specialists and discovered he has ADHD, ODD, anxiety disorder traits and a formal diagnosis of High Functioning Autism (HFA). And there we sat. At age 5 our world suddenly changed. Yet we were not upset ~ more of a relief flooded us.
It was like walking into a set of hidden doors and entering a world that looks exactly the same but is not. We bought every book, joined a group, boosted therapy, told the school and shifted our way of thinking. Some things we never understood about our son suddenly made sense and we knew we could teach him to manage in our society but that it was going to be incredible challenging, wrought with pit falls and problems.
HFA is Asperger's. Asperger's impacts families in a myriad of ways....
- Problems with social skills: Children with Asperger's syndrome generally have difficulty interacting with others and often are awkward in social situations. They generally do not make friends easily. They have difficulty initiating and maintaining conversation.
- Eccentric or repetitive behaviors: Children with this condition may develop odd, repetitive movements, such as hand wringing or finger twisting.
- Unusual preoccupations or rituals: A child with Asperger's syndrome may develop rituals that he or she refuses to alter, such as getting dressed in a specific order.
- Communication difficulties: People with Asperger's syndrome may not make eye contact when speaking with someone. They may have trouble using facial expressions and gestures, and understanding body language. They also tend to have problems understanding language in context and are very literal in their use of language.
- Limited range of interests: A child with Asperger's syndrome may develop an intense, almost obsessive, interest in a few areas, such as sports schedules, weather, or maps.
- Coordination problems: The movements of children with Asperger's syndrome may seem clumsy or awkward.
- Skilled or talented: Many children with Asperger's syndrome are exceptionally talented or skilled in a particular area, such as music or math. ~ from: webmd
We recognize these challenges in Espen.
We live them every single day. We live life amazingly different. I learn and see things through him and with him that I never imagined. I had to let go of the image I carried of what parenting was and each and every day I learn to be in this place with this child. This moment. We live in it and we move on. We do it very quickly. Some days we fail miserably.
On the whole, because Espen manages to function within societal norms, I do a terrible job educating and advocating. He manages because we expose him to every imaginable experience. We do things, go places, participate in life within the world. We talk and teach and explain REPEATEDLY. We let him be as he is. We ignore the ignorant stares and curious glances. When the situation is right, we visit with strangers about the challenges of our family. We quietly tell people life is how it is meant to be, but it is not always easy. We don't hide. We are strong and brave and full of life.
Autism Month for our family is important. But this life is important all the time to us. This life where we learn new things and we find acceptance for and from all people. The big lesson here... if I want you to accept our family, I should just accept yours and teach my child in the best way he can learn, to be kind. Autism Month... Acceptance, Appreciation, Education, Awareness...
Tonight I was not "enough" and just emotional which made me cry. Hugging him close to me I cried. He patted my hair and promised he would just try to be better and I assured him he is perfect the way he is. I then explained in whispers through my tears, that mom is really having a hard time with bedtime. He is perfect. I cried because at that moment I just felt like I am not "enough". And my beautiful son held on. He held on to me and told me he just wants to stay home and hug me. He held onto me and told me he does not like going anywhere, does not like school, does not like anything because it is all to much. He held on and said he can not go to sleep because he has to be ready then for the next day. He is 6 and he holds on to his day so he does not face the next one.
