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! 

39 pounds and gaining

This is a follow up to the last post called "Watching Sydney's Weight" so you might want to read that post first. 

Sydney earned her ten stickers in ten days and got her livestock truck a couple of nights ago. She is thrilled and so am I.  She weighed in at 39 pounds last evening. Sydney weighs herself almost every evening after her bedtime snack and comes and tells me what the scales say. Usually she has the numbers mixed up and says something like “eight-three point five” or “thirty eighty ninety-nine.” When Sydney came to me and said she was 39 pounds I doubted her and followed her to the scales. I had been excited we were creeping up past 38 and a half pounds at the beginning of the week. Of course, weight can fluctuate a little so tomorrow we may be back under the 39 mark. However, we have been stuck at 37 and 38 for a long time so anything close to 39 is looking pretty good. The doctor will be pleased if this continues. I believe it is the 300 calorie bedtime snack that is making the difference, just as the doctor said it would. I don’t think we have made our goal of 1600 calories a day, more than twice since our trip to the endocrinologist. THAT is a lot of food for a tiny little stomach to hold. I have made a huge effort to push bread, pasta, meat and desserts and have limited the vegetables and low calorie snacks. It is getting easier for me to say “no” to the request for raw carrots or green beans and hand her a brownie instead. haha

Sydney had a bowl of vegetable soup for lunch today after a week of going without her favorite lunch. She LOVES vegetable soup. She misses her vegetables the way I would miss my Dr. Pepper if I had to cut way back. I have found several high calorie snacks Sydney likes now. Little Debbie’s cakes are at the top of the list, along with pudding cups and pecans. It doesn’t take very many Oreos or peanut m&ms to get to 300 calories either and she loves those. Sydney and I have made a couple of trips to the grocery store in search of new snacks to try. Reading the labels is something I have done for years for myself but I was always looking for lower calorie foods, not higher calorie foods. I know a lot of people who would like to “trade” weight problems with Sydney, and I am one of them.  haha

I may actually be able to retire the 4T shorts at the end of this summer. The 4 slims are getting just a little tight too! I never had a kid wear the same shorts three summers in a row before. Sydney's wearing them all out.  I tried 6 slim jeans on her today. She'll need them for the length and we'll just have to cinch them up really tight. Thank goodness for the adjustable waists in pants these days!   

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! 

It DOES hurt!

I've been up for a whole thirty minutes this morning and I have not stopped smiling. Ironically, my smile is a direct result of Tate's discomfort. Please, if you have not read my previous blog post “Does it hurt?” from April 25, 2012 then take a look.

Tate is an early riser (and that is an understatement.) Many people with autism require little sleep, or perhaps it is just that they struggle with chronic insomnia. Tate is almost always up by 6:00 and sometimes it is 5:00 when I hear him up. Most mornings Shawn is up early too. I am NOT an early riser and that is an understatement. I think 9:00 would be the perfect time to crawl out of bed. Of course, this rarely happens. The past couple of years I can leave Tate in a room unsupervised. Sydney is another story. There is no telling what she will get into or break if left unsupervised. But I did not start this blog post to talk about how much sleep I am getting…..

This morning, Shawn woke me up earlier than I like with the news that Tate’s ear was hurting. I was wide awake instantly with questions. "How do you know?" “Did Tate TELL you that?” TATE TOLD SHAWN THAT HIS EAR WAS HURTING.  This is a HUGE milestone. If you read my earlier blog post “Does it hurt?” or if you know us well, you will know that Tate has had MANY ear infections in his life and he has never complained of pain. He won’t ever tell us when he is hurt or sick. We have to guess. 

The ear pain this morning is from swimmer’s ear, I am certain. We put in an above-ground pool this summer and spend hours in it every day. Sydney has had swimmer’s ear this summer and got drops for it last week. I have been wondering if Tate had any trouble with water in his ears but he wouldn’t talk to me about it when I inquired. Levi and I have been having trouble getting all the water out of our ears sometimes but our ears have not hurt. 

Tate’s favorite thing to do in the pool is flip or somersault. He practiced for days and sometimes will somersault over and over, until I wonder if he is using it as a repetitive behavior to stim. I give him the benefit of the doubt and hope he just loves the fact that he mastered a new skill. I like to use denial sometimes to help me through the day. haha The somersaulting gets water in my ears worse than anything else so I don’t do it much. Tate is doing a lot of really cool things. He loves to go underwater and Shawn and I have marveled about how long he can stay under. I think it is also because he can ignore pain to a degree. I cannot stay under as long as Tate can. He could not go under much until he learned to use a face mask. Levi and I have to use a nose clip or a facemask to swim under water. Tate was not interested in trying on the facemask at the beginning of the summer. Once he decided to try the facemask he wanted to spend all his time under the water. He is having so much fun in the water. Tate has always been big for his age and heavy. This past year he got a lot taller and slimmed up but this summer he has actually started to look skinny. I think all the exercise in the pool has helped. 

In the pool

If you see me around today, note the smile on my face. It is not actually because Tate is hurting, but because Tate acknowledged that he is hurting so someone could help him with it. Maybe this is just a beginning and Tate will be telling us in the future when he hurts or feels sick. I am on cloud nine. 

Find us 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! 

Watching Sydney's Weight

Sydney’s premature birth, hyperactivity, exposure to alcohol in the womb, neglect for the first ten months of life, and genetics, all play a part in her physical make-up. She was five and a half pounds at birth, and only sixteen pounds when we brought her home at 11 months. She is eight and a half years old now and still at the bottom of the growth chart, for both height and weight. It baffles me because she eats so much food. She snacks all day long and eats huge meals. She does prefer vegetables and fruit over bread, meat and sweets though. She cannot have much dairy because it hurts her stomach, as she is lactose intolerant. 

One of the medications Sydney takes has a side effect that can cause her appetite to be suppressed but I do not see any evidence of a suppressed appetite. She eats now as she did before we began medications. She had a hard time gaining weight before the medications and doesn’t put on weight now either. But, the medication is taking the blame from the doctor that prescribes it. I live in fear of losing the prescription and the 12 hours of calm it gives us a day. As I have blogged about before, the difference in a medicated Sydney and a Sydney off meds is tremendous. She is so much easier to live with and to love when she is not jumping up and down, barking, laughing wildly, knocking things off shelves, and touching everyone/everything in reach. I cannot even describe all the differences Sydney's medication makes in our lives. It helps Sydney to learn, play, and focus, and gives my other children a sibling they can enjoy and a mother with time for them too.  (See my earlier blog post entitled "It's a mad, mad world for a better description of Sydney off her medication.) 

Sydney has weighed in at 38 pounds for a long time now and her doctor has become so worried about her lack of weight gain that she sent us to a Pediatric Endocrinologist this week. We had Sydney’s hand x-rayed prior to our visit so the Endocrinologist could look at Sydney’s “bone age” with us. He also looked at the genetic testing we had done when she was a toddler while we were with him. The previous tests eliminated some of the tests he would have ordered himself. The visit with this doctor was very educational for us. He ordered a blood draw so he could make sure Sydney’s thyroid was working well and she has enough growth hormone working for her. These things could have been damaged by her exposure to alcohol in the womb. 

The Endocrinologist said he purposely does not look at a patient’s actual age before he meets them so he will not be influenced. He likes to guess the age before he knows the age. He guessed Sydney to be about five or six.  This is what most people guess when they meet her, based on size and her behavior. He said Sydney’s x-ray showed a five or six year old, as well. If he uses the growth chart for a five and a half year old, Sydney is in the 25^th percentile on height and weight instead of in the third percentile. This is sort of encouraging. The Endocrinologist expects to find nothing with the blood tests he is running. He told us to make sure Sydney is getting 1600 calories a day, with 300 of them being minutes before bedtime. Sydney eats constantly but her stomach is small so she eats small portions. Sydney prefers vegetables and fruits so most of her snacking is low calorie. She is very active so she must be burning off all of her daily intake of calories. She is somewhat lactose intolerant so dairy can only be given in small amounts. We have developed a few strategies over the years. Sometimes, I give her dessert before her meal. Sometimes, I put the green beans out of reach and tell her she can have them AFTER she eats a donut. It feels wrong but I force myself to do it. I have been reading labels and trying to buy the higher calorie snacks for Sydney. That is a total reversal of everything I have done for myself and the rest of the family. 

A bedtime snack is already part of our routine for Sydney most nights so it is not a problem, but the choice of food is going to become a battle now as I aim for 300 calories. Two nights ago, Sydney wanted a vegetable at bedtime. I gave her an ice cream sandwich instead. Even then we were still not going to meet the goal of 300 calories. Sydney ate a few bites willingly but when I wouldn’t let her abandon it, she cried and it took her a long time to finish, thus delaying bedtime for her. Last night, I gave her a half a peanut butter and jelly sandwich and a piece of cake, with a reward of watermelon for finishing the high calorie foods. That went a little better. My oldest daughter, watching me struggle to get enough calories into Sydney, reminded me that I usually use charts and prizes for changing a challenging behavior. So, today I went to a farm store and got a toy Sydney has been coveting for a while: a semi-truck and cattle trailer for her herd of plastic cows. I took her with me to help pick out the color she liked best. I explained that it will take ten stickers to earn the truck. She will get a sticker every time she eats the bedtime snack I choose to serve with no complaining or crying. It may take her a long time to earn the toy. Although, the reward is a big one and she really wants it, by bedtime the medicines that helps Sydney to stay reasonably calm and control some of her impulses has worn off. She often tries to manipulate us at bedtime and delights in any turmoil she can instigate. After only two nights of me pushing a bedtime snack she is already seeing it as a potential for much drama and turmoil. The drama she can create will probably be more rewarding than the toy. The chaos she can create will be so desirable that she may be tempted to cause problems even when she wants the snack I offer and could easily earn a sticker for eating it nicely. This is who Sydney is and this is how she thinks. This is what alcohol did to her brain. Sometimes she does things she doesn’t even want to do or like to do to get a reaction that she does not even want to get, all because she had a thought, an impulse, and she cannot stop herself from acting on it. 

Update:  Our first night using the reward stickers began with me reminding Sydney of the expectations. I am trying hard to choose snacks she likes, or at least, does not hate. As I set a bagel covered with strawberry flavored cream cheese in front of her tonight, I saw the beginnings of tears. I set the box containing the truck on the counter beside her plate and reminded her how much fun her cows were going to have riding in that truck. It took her a while but she got the bagel finished and she went to bed without any drama. She is sleeping with the truck (still in its box, of course) and her first sticker is on the chart. Maybe ten days will be all it takes to earn ten stickers and the bedtime snack routine will be instilled by then. I can hope.  (If you enjoy reading about Sydney and want to read some of the "interesting" things she does, read my earlier posts entitled "hoarding" and "Sydney-isms.")

See what happens next here: 39 Pounds and Gaining