The Faces of Friendship

There you are in the grocery store, the face of kindness. My son is walking beside me as I push the cart and you walk quickly to catch up to us. You are shopping with your mom too. You call my son Tate by name and greet him enthusiastically. Tate mumbles a response, barely looking your direction and wanders on ahead. You tell me that you go to school with him and when I thank you for speaking to him so nicely and I try to make an excuse for his lack of interest in you, you say, “Oh I know. That’s just how he is.” You call, “See you at school Monday Tate!” and as you walk away, my heart sings knowing there are peers like you who genuinely like my son for who he is, autism and all.

There you are in the school auditorium, the face of consideration. My son and I are attending his sister’s school play. We find our seats in the school’s auditorium. You come, dragging your mom by the hand, and sit beside Tate. You speak to him and introduce him to your mom. I ask Tate to introduce me to his friend. He says he does not know your name. I cringe inside but smile, hoping you understand. I tell you that Tate has trouble matching faces and names. You tell me you already know that, assure me it’s okay, and you politely introduce yourself and your mother to me. You try your best to engage Tate in conversation and you make a little progress, while your mom and I listen and make a little small talk over the tops of your heads. I am very impressed and thankful my son is learning social skills from peers like you.

I am at the Junior High school, sitting in seventh grade Science class. I've been invited by your teacher to hear Tate give his presentation on the solar system. You are there, so many of you! You are the faces of encouragement. Tate stands in front of you proudly, a big smile on his face. It never occurs to him that you might not be impressed with his modified school work or the presentation his Paraprofessional helped him to put together. Your presentations were much more detailed and they were done independently but you show Tate the same courtesy you showed the peer that presented before him and the one who comes after. My heart melts knowing you respect my son and make him feel like a part of your class regardless of his abilities. I so appreciate you!

There you are in a department store, the face of compassion. I’m out shopping and feel eyes on me. I look over to see you smile and you ask, “Are you Tate’s mom?” I say that I am and you ask me where he is. I tell you he is home. You tell me you eat lunch with Tate sometimes. I tell you how much it means to Tate’s family to know the kids at school are so kind to him. You smile and tell me it is fun to eat lunch with Tate. You add that you have learned more from being Tate’s friend than he has learned from you. I ponder this, as I know Tate is not what most kids would consider “fun” or is he able to do the classwork that the rest of you can do. He is hard to converse with, sometimes seems rude, he does not understand social cues, and he performs below grade level in every subject. But you know that. You know how he struggles to understand friendship yet how much he needs friends. You know how he struggles to process language, especially when it is spoken quickly. You are willing to be the kind of friend a kid with autism needs, a friend who has to give more than they receive, a friend who has to slow down and give Tate time to process before he can respond. And you are okay with that. My heart swells with gratitude.

This evening I need to find the face of understanding. We have come to a music program. Tate is to sing with his classmates. I hoped you would be here at the entrance to the school and I see you walking in right ahead of us. I stop you and ask you if you know where Tate should go to find his group. You tell me you know exactly where to go and you say, “Come on Tate. Follow me.” I call to you as you disappear into the crowd, “Thank you!” I feel blessed and relieved to be a part of this community where I can find these willing faces all around us.

I see you at a school picnic, the faces of acceptance. Tate’s class voted and chose to go fishing at a lake as their end-of-the-year-event. We considered skipping it because Tate is not interested in fishing at all. He does not like to get dirty and I figure he will most likely spend the evening asking us how much longer we have to stay. We decided he should go and as our family pulls up to the lake, several of you approach our van, calling Tate’s name and asking him to hurry and join you. He says, “My friends are here.” He follows you to the gathering and we bring up the rear. My heart smiles at the knowledge that my son has friends. He has friends and he is accepted, autism and all.

As a part of the autism community I often hear of prejudice, intolerance, hate and bullying. We’ve seen very few of those things in my son’s life. Perhaps it is because we have been open about his autism diagnosis since kindergarten. Perhaps it is because we made sure his classmates were educated about autism. Perhaps it is because of the lunch buddy program and the other social coaching programs his peers have participated in with him. Perhaps it is because we live in a small town and a close-knit community. Perhaps we just got lucky and my son has a class of exceptionally caring peers whose parents have taught them about friendship, kindness, consideration, encouragement, respect, compassion, understanding and acceptance. Perhaps it is a combination of all of these things. 

If you liked this post, you might like to read Building Tate's Friendships.

celebrate autism?

Tate, age 3

I just don’t get it when I hear a parent of a child with autism say they “celebrate” their autism. I have heard parents say, “I wouldn’t change anything about him.” What are they thinking? I’d change Tate in a heartbeat if I could and I have been doing everything I can since he was a toddler to minimize as many of the stereotypical behaviors of autism that I can. 

Here are my black and white thoughts…. If your child was paralyzed and you knew he’d be able to walk with a surgery or a special piece of equipment, would you say, “I accept his paralysis and will not seek help or a cure?” If your baby was born deaf, would you “celebrate” his deafness or would you seek a physician that was able to repair his ears and give him the ability to hear? There is no cure for autism but there are many ways to minimize the behaviors that will cause that child to miss out on opportunities. If you truly celebrate the child’s disability and accept it then would you be asking therapists for help, reading to find the latest research, and seeking the advice of specialists in the field of their disability? 

I met a parent many years ago that told me she had a son with autism and wouldn’t change him for anything. In the same conversation she told me about all the therapies and programs he was participating in. ???? Wait a minute? Didn’t you say, you wouldn’t change him? I’d do ANYTHING I could possibly do to give Tate a better life, a life free of autism. I’d let them take the brain from my own head and give it to him if it would mean he could live the rest of his life without autism. I do NOT celebrate autism. 

Does that mean I have less love for Tate than the parent who says they “celebrate” autism? I think not. I actually have a hard time believing that anyone really celebrates autism. I would believe they have come to ACCEPT autism, as I have, and what they celebrate is the love they have for their child. I love Tate with all my being but I HATE autism. Autism has stolen the REAL Tate from me. He will never become the person he should have been.  What? You think I have it backward? You say the Tate with autism is the impaired Tate. If he had been born blind and I found a doctor who could give him sight, would I have been wrong to do it? Would I have been a bad parent for not accepting the blindness and the “real” Tate? If a person has a life-long disability (deafness, blindness….) they learn to live with it and their parents accept it and they love that child, disabled or not. BUT, they give that child every opportunity available. They teach them sign language, how to read Braille, or anything else they need. I somehow doubt they ever celebrate the deafness or blindness. I do NOT celebrate autism. I do NOT celebrate his sensory issues and I try to help him overcome them. I do NOT celebrate his inability to communicate well and he gets lots of teaching and therapy. I do NOT celebrate his social deficits and we work on them constantly. I do NOT celebrate autism…. But I DO love Tate. Tate is a blessing to me. Autism is not a blessing for Tate or for me either. 

See this post for more about this topic: Is autism a disability?
And PLEASE, if you are an autism parent or a person with autism who feels very differently than this, read this post before you comment: What did I do to deserve this?  

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Would I do it all again? Will you be surprised at the answer?

I have been hoping to find other parents that blog about Fetal Alcohol Syndrome (FAS) so that I could learn from their experiences. I love to share what has worked and has not worked with my kids so others might benefit from my experiences, as well. It can save a lot of time when you are not “reinventing the wheel” and when many minds are looking at the same problems, there are often many solutions offered that one person alone might not have thought to try. At the very least, I thought finding other bloggers who are willing to share, would help me to see that others are surviving FAS and I will too. Encouragement is what I need the most to keep on doing what needs to be done. Sydney is a lot of work and I sometimes get discouraged. Last night I found a blog called “When Rain Hurts” written by the mother of a boy named Peter, adopted from Russia. He has FAS and his parents have been through far more than we have.  She is a brilliant writer and her blog is going to be published as a book. The link is http://whenrainhurts.wordpress.com/

I found Sydney had many things in common with Peter and I have many things in common with his mother. She said she was left feeling inadequate after reading many books about autism and adoption. I am often left wondering if some authors are being truly honest when they say they have completely accepted what they cannot change or that they embrace their child’s disability and would not change anything. Then I suffer extreme guilt because I CANNOT feel that way about my own children and their disabilities.  I do not embrace autism or ADHD or FAS. I HATE autism, ADHD and FAS. I would do almost ANYTHING to change those things about my children and we have worked hard to minimize the symptoms of these disabilities. We spend a lot of money on medications that help and a lot of time on interventions.  I am not bitter but I hate the disabilities my children have. I can see the people they would have been without their disabilities and the adults they will become because of their disabilities. It is frightening to think about the things they will struggle with, the friends they will and will not have, and the kind of care they will receive when I can no longer care for them.

I have read many books about autism and met many parents of children with autism in the past few years. Several of them say that they would change nothing about their child because the disability is part of what makes them who they are. I have a hard time understanding that. I would do anything, give anything, or give up everything if I could “cure” Tate’s autism or Sydney’s FAS. One mother, who told me she would not eliminate her son’s autism even if she could do so, had her son enrolled in a very expensive discrete trial program at the time. Did she want to minimize the disability that she had just told me she cherished as part of who her son was? I had to bite my tongue hard that time. See my  post called: Celebrate Autism? for more about this. 

Once in a while people ask me if I would do it all over again. Would I still adopt Sydney? Honestly, I think I would. I think I would because I love her with all my heart. I think I would because I cannot bear to think about where she would be or what she would be doing if she were still in Russia. I think I would because she has a soul and I want to teach her about God and His plan so she can go to Heaven. I fear that someday my answer will change. I've read that thirty percent of people in prison had birth mothers who drank. That scares me. If a person has brain damage that keeps them from being able to make good decisions, how are they to obey laws? If a person has little or no impulse control, how can they be kept safe? 

No one has ever asked me the same question about Tate, perhaps because he is not adopted. If I could turn back the clock, would I still have planned one more baby, the year before Tate was born? No, I would not have. There, I said it.  I would not have conceived a baby, knowing he would have autism. Autism has drained me emotionally, mentally, physically, and financially. Having said that and before the hate mail starts pouring in: I adore Tate. My world revolves around Tate. I am not a patient person, but I almost never lose my patience with Tate. He brings out the best in me. He gives me a lot of happiness and he has taught me a lot of things. Although I have been drained in many ways, Tate and autism have helped me to grow spiritually. I see things much differently than I used to and I am a much better person than I was before Tate was born. The main reason I would not have purposely conceived a baby knowing he would have autism doesn’t have as much to do about what autism has done to me, as it has to do with what autism has done to Tate. I see him struggle to fit in and know he will never be able to understand the world around him.    

I’ve said it before and I will say it again:  The phrase “Everything happens for a reason” is one of the most ridiculous things I have ever heard. God does not give people autism and God does not cause women to drink so their babies will be born with a lifelong handicap. That whole idea is absurd. It is true that we can make the best of a bad situation and grow stronger because of it but there is no divine reason a child is born with a handicap. (My "rule" #11.)

  

None of the above thoughts or feelings really matters in the end. Both kids are here. Both kids are mine. Both kids are handicapped. Both kids are loved. Both kids bring me and others so much joy. I really do love my life. 

We have seen so many good things happening. We didn’t know how much progress Sydney could make and she has already overcome some of the problem behaviors we worried the most about. Something that concerned us a lot when Sydney was a toddler was her inability to differentiate between family/friends and strangers. She was completely comfortable in the presence of a crowd of unfamiliar faces and she sought the attention of complete strangers. Long after she should have bonded with us, she would reach for people in stores, wanting to be held. I knew if someone had picked her up and walked away with her she would have never looked back. She would not have missed us at all. She did not seem to understand where she belonged or that she needed me. Anyone could step in and take care of her needs and she would not have noticed her mother was not around. I’m not sure when she finally understood or cared who she was with. It probably happened very gradually and I was too busy worrying to notice. In my opinion, her attachment took far longer than it should have but it finally has happened. She is too trusting still but she does now have the same kind of reactions my other children would have had in new settings or around unfamiliar faces. She even acts shy occasionally and that is not something we would have seen when she was a toddler or a preschooler.

I’ll end with a couple of my favorite Sydney-isms from this week. On the way to school, Sydney saw a dog beside the road. She said "Mom, on your way back home, stop and ask that dog what it is doing." (Yes, she was serious.) The same morning, right before we left home she asked her dad "How much is 36 minus 6?" He said "30". Sydney replied "Nope 240. That one must be too hard for you Dad." 

If you enjoyed this post and would like to see a more current one about these two great kids, click this link: Mommies Don't Give Their Kids Away.

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