A's Story

I would like to introduce myself, I am A's adoptive mother. A is a sweet boy who is very social, loving and hard-playing. He is fun and intelligent and most of all makes me feel like smiling every time I think about him. A is 4 years old and challenges me in many ways, I think he is too clever for his own good, or perhaps it is my own good I am more worried about!

Things I had to think about before adopting A were mainly adoption issues such as acknowledging that differences are a good thing, that we can celebrate good things but we must not ignore the painful things. Adoption is a blessing as well as a burden for parents and children alike: there is a catch 22 in adoption. 'If a child is adopted, thus chosen, first he must be rejected or given away.' If we ignore the second part, we ignore half of the child's story. I see a lot of parallels in adoption stories and DSD stories. We cannot keep something quiet or ignore it and hope it goes away if it is fundamental to our character development. We have to face it square on, however uncomfortable it can be.

So, I hope if you decide to read my A's Story, you will be refreshed by my openness about sex, trust and development and not offended.

Knowledge is power, 1 July 2011 

Giving A Control, 10 September 2011

As most of you know, A is adopted. One of the most challenging elements of being adopted is that you were wanted and needed by someone who loves you very much. However in order to know this, first you had to be given into adoptive services, which could be interpreted as being unwanted and not needed. Add to the mix that you have AIS. Now, consider the trust elements you have with adults: first one gives you away, another takes you in, then hands you over to strangers who take you away from all you know. In between all these life changes, there are trips to the hospital where tests you can not possibly understand are done. Basically, you learn very early that you have no control. Now, imagine what it may be like having doctors examine the most private part of your body, possibly even hurt you down there while carrying out tests, and eventually suggest surgery to fix you, you can imagine what A faces down the road. Medically speaking, there is nothing wrong with A ; his organ functions are normal. So, we are talking about cosmetic surgery. You have probably already guessed that I am struggling with the idea of surgery on a child who has no idea why it is being done and has no need for it except for in a socio-psychological way. This all said, it is not my body and I will not refuse him any surgery he feels he must undergo. The conundrum of course is to figure out what he really wants, what he needs and what is best for him when he is only 4 years old. All this is more difficult knowing that my decisions will affect the rest of his life. So, I have decided to try to give A as much control as possible. Here is the beginning of a story that will go on for the next 20, 30 or even 60 years.

I sat down with A a couple weeks ago and told him that I wanted to make an appointment with his GP. He wanted to know why, and I explained to him that I wanted to talk to the GP about his bottom. A asked me what is wrong with his bottom and I said that there was nothing wrong with it, but that it is a little different and I don’t know what to do without the doctor’s advice. (We have been having little chats about differences and why they are a good thing, ever since we adopted our two kids). A is aware that his genitals are different from his sister’s, his mother’s and his father’s. He knows he is different from other boys and girls and has told me that his willy isn’t long enough to stand up to pee. Although he knows he’s different, at this age, his main problem is about standing up to pee, not what other kids think about him. Soon, though, he’ll want to be just like everyone else- my hope is that since this people don’t see his genitals on a day to day basis, the way he looks down there won’t bother him on a day to day basis.

About 2 months ago, I told A that he had to get his BCG injections, and off we went. As you may know, this is one of the most painful vaccinations out there, and A does not think fondly of the day. So since the BCG, there is nothing out there worse in A ’s mind than injections. And this was his first question when I suggested making an appointment to see the doctor. I told A that there wouldn’t be any injections or medicine. I said that the doctor may have to look at his butt to see how it is different. I thought A would like the doctor’s opinion on whether he could stand up to pee. You see, A was afraid of spilling on the floor, not doing it the right way because he has been having a few problems on that front. So he agreed to go to the doctor. A few days later, we were in the doctor’s office and I explained to the doctor [who has incredible bedside manner] that I want to be informed about A ’s options over the next few years. I need a specialist to care for A , and time is running out if surgery is the best option for him, as I understand that pre-puberty surgery is the safest. The doctor offered to research the issue, find a good specialist, and get back to me. Then I explained A ’s concerns about standing to pee. The doctor mouthed over A ’s head that he’d need to examine him, in order to know if it was possible. And I explained to him that A had already agreed to an examination before coming here. The doctor asked A if it was ok, and A got shy. Knowing A ’s concern, I offered to stay in the outer room while the examination was taking place. In less than a second, A was ready to have his exam. He just didn’t want two people standing over him while he was being examined. As you can imagine, children with this condition are relatively rare, only 1 in 2,000 are born with this condition so the doctors at the hospital in Dublin all stood over him, 6 at a time, usually. So I understand A ’s need for privacy, and agree wholeheartedly to let him be examined alone. By the way, the doctor was a little surprised that I’d send my 4 year old off to an exam by himself and asked me twice if it was really ok. I said that I’d do whatever made A more comfortable, and that I trusted him completely with my child.

When they came back about 30 seconds later I asked A if he was ok. He had a silly smile on his face and said it was ok but tickled a little. I said that was normal and then the doctor told A he can stand up to pee. And gave me instructions on how it would best be done. I conveyed this to his dad and they have been managing that issue since. A was all puffed up and proud of his accomplishments and I think his part in the decision making process was the key element to his feeling of success. A is not afraid of going to the doctors, unless injections are involved, that is. You may be wondering why I wanted a second opinion on whether A could stand up to pee, but I wanted to introduce A to examinations by showing him that something he himself was most concerned about could be solved by the doctor. Also, with the doctor telling him that all boys spill on the floor, and not to worry, it made A more sure that though he was frustrated by his difference, it wasn’t really a big problem. I’m kind of proud of myself for introducing the whole procedure regarding the differences in his development as practical problems that can have simple solutions. And for giving A the veto on any thing we did from the moment of making the appointment to agreeing to the examination on the day. I hope he will always feel confident enough in himself to tell the doctors yes or no, according to his own view on things. Perhaps the doctors will have to work harder to persuade A to do things, but in the long run, I hope it will make a better man out of my little boy.

What does a willy look like? , February 2012

Will he look like a girl?, March 2012

What to say, what to do…., April 2012

Swimming in Junior Infants , May 2012

The Fanny Story , November 2012