A sack of potatoes

When Tate was an infant, he behaved much like my other babies had. Occasionally I would scratch my head over something that seemed odd, but there were no sirens going off in my head or anything like that. I do remember Tate getting very upset when I changed his diaper from day one. The other babies had cried sometimes when I changed them but not to the degree Tate did. He got panicked anytime I had to remove his clothing or take the diaper off. I thought he was feeling unsafe or cold but I had no idea that these kinds of sensory issues could be indicators of autism. 

Tate never learned to nurse, although I had planned to feed him as I had my other babies. He just didn’t want to put forth the effort it took but he would take a bottle. I eventually gave up and used the bottles. I saw him as a baby and as a toddler ignore a growling stomach many times if it took too much work to satisfy his hunger. Once when he was a toddler and had a sore throat, he went for three days without eating and two of those hardly drinking anything. Just before I was going to take him to the ER and request an IV, he began to drink again.

Tate cooed, smiled, laughed and jabbered on time. He later learned words and began to talk on time.  He actually had a pretty good vocabulary with some big words before he began to lose them around age two. As a matter of fact, Tate learned, almost, too quickly and was interested in learning things that were not age appropriate. He learned the alphabet when he was very young and he recognized numbers and the spelling of his sibling’s names as a toddler. 

One indicator of autism is that a child will not play with toys appropriately. That might have been one of the first big things I noticed. Had I known that was a symptom of autism I would have began to suspect something a little sooner than I did. Tate enjoyed ribbons and he loved the ties on his crib’s bumper pads. He would play with them instead of the toys I gave him. My mom sewed some long strips of material so he could have them to play with outside of his crib. We thought it was funny, sweet, a little quirky, but still no sirens were blaring in my head. Later, when he could crawl, I would often find him running his fingers up and down an electric cord. His favorite cord was on the vacuum cleaner.  The vacuum cord was round instead of flat. Tate was terrified of loud noise and hated the vacuum if it was turned on but he could not resist the vacuum if it was quiet. I used to say he had a love affair with the vacuum. There were a couple of times I remember shaking my head and saying “maybe he has autism.” The only thing I knew about autism was that kids with autism had strange interests and performed repetitive behavior. It was not until Tate was two and a half that I learned what autism was and wished I had paid attention to what must have been my uncomfortable feeling that something was wrong. Saying “maybe he has autism” was probably my way of voicing my concern.

One of the most unusual behaviors Shawn and I noticed and discussed, long before we knew it meant anything at all, was Tate’s limpness. He was just “there” when we picked him up. He didn’t hold on, he didn’t move to situate himself on our arm. He didn’t lean into us. He didn’t even adjust his weight or grab hold of us when we went around a corner. We had to do all the work. We wouldn’t have known this was “different” except we had five babies before him. We knew that babies hold on to a shoulder or lean into the one carrying them and they are not nearly as hard to carry as Tate was. He was like a sack of potatoes; and a sack of potatoes is a lot harder to carry than a typically developing baby or toddler. Tate didn’t seem to have a sense of WHERE he was in space. He also didn’t figure out how to move his body to make himself (and others) more comfortable. Not that he would have CARED about making others more comfortable because he also was not learning that people around him were not having the EXACT same thoughts and feeling he was having. But THAT is another topic for another day.

That spatial awareness has plagued us for a long time. You cannot learn to ride a bike if you cannot balance yourself and adjust to movement. Then there is something as simple as giving a hug. Hugging Tate is like hugging a big beanbag. He just doesn’t know what to do with his arms and if we can get him to put his arms around us he doesn’t put any oomph into a squeeze at all. He does try because he knows that hugs make me happy but he is almost eleven years old and I’ve never really gotten a good hug from him before. It is like he is trying to hug me but his arms have been shot full of Novocain so he cannot make them do anything but hang. He might want to exert some kind of pressure but he doesn’t know how much force to exert because he doesn’t feel things the same way we do. One of the best presents I could ever get in this lifetime would be a hug, a real hug, from my boy Tate.

Another post you might like:  Look into my eyes

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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.

Find me on Facebook at Quirks and Chaos. Like what you read? Want to become a follower? Click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks! 

"A friend is a guy who likes you." Tate

Summer is coming to an end. In an effort to transition Tate back to school I have been reminding him of the people he knew last year and the things he did at school. I had fully intended to have play dates for Tate this summer. But, the summer flew by and I did not make the effort I should have. Because Tate does not like things or people out of their places, he has never been interested in having classmates over. The few times I have suggested bringing another child with us on an outing or having someone over to play, Tate has become nervous and made excuses. We tried it a few times when Tate was seven or eight years old but Tate was less than thrilled about it then. I am embarrassed to say I took the easy way out and let opportunities slide by many times over the years. Yesterday I told Tate he was going to have a friend come over today to swim. He made lots of excuses about why it wouldn’t work. I ignored him. This morning we went and picked the friend up and he came over to swim and play for a while. This particular boy is an answer to my prayers, literally. His personality and energy level balance the deficits Tate has. He is enthusiastic and excited but not so wild that he intimidates Tate. This boy seems to understand when to gently lead Tate in the direction he needs to go and when to give him a hard push. The most important thing though, is that he genuinely likes Tate and wants to be his friend, even though Tate cannot fully reciprocate in many ways. 

  

Tate has never been ostracized by his classmates or mistreated in any way. It has been quite the contrary. Almost all of Tate’s classmates have been great with him. It is just that Tate has never seemed to tolerate peers quite as well as he does the boy who came over today and just a small number of others. 

I was pondering “friendship” this evening and what makes a good friend. I asked Tate if he knew what a friend is. Tate is used to me asking him to define words so I can be sure he understands the things we are talking about. Tate told me “a friend is a guy who likes you.” I thought it was a pretty good definition. I remember a quote my older sister wrote down for me once when I was in grade school.  It has stuck with me my whole life: “I went out to find a friend and could not find one there. I went out to be a friend and friends were everywhere.” A good friend is someone who puts your wants and needs before his own. I’m not sure Tate will ever know how to BE a good friend because autism has robbed him of many things, but I do know he HAS a good friend right now. He has more than one!

If you liked this post then you might like a more recent one on friendships: Baldwin Bulldogs Class of 2020 

Find us on Facebook at Quirks and Chaos. Or, if you liked what you read and want to become a follower, click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks!