Who am I?

A couple weeks after getting home with the baby I looked at the hands again and to me, the lines on BOTH hands were the same. I again questioned the doctor who finally decided to just put my mind at ease and do the chromosome study anyway. Well, he did and then came the day that he called me on my cell phone and told me that he had the results of the test. He assured me that baby was not Trisomy 21 and went on to say that he was not mentally retarded either but he needed me to come into his office. Well, it was pretty obvious that there was SOMETHING wrong, so I naturally went into hysterics and called my husband and we shuffled off to the doctor's office to be told that my perfect, beautiful little baby boy had an extra sex chromosome. (officially referred to as Klinefelter Syndrome or 47xxy). The doctor knew little of this disorder, only what he had learned in Med. school but since we had such a great doctor, he had taken the time to do some research on the subject before we got there.

At first I was devastated! Then I was depressed. Then I listened to what he had to say and thought "there must be something more to this" because he had not told me anything too terribly awful. So I went to the Library to do some research. Again I found nothing that was so horrible that we just could not live with it. Then off to see the Genetic doctors and the counselors at Children's Hospital, and , after spending an hour listening to what they had to say, I simply said to them, "Am I missing something here? You have not told me anything so horrible that I need to be so terribly upset". Honestly, after researching and listening and learning, I felt as though I had spent that week really upset over nothing! Yes, there are implications. Yes, he may have some difficulty learning. So I will have to be a parent and help out and his teacher will have to be a teacher and help him learn and then he may NOT have trouble. And he MIGHT not produce testosterone and need injections or the patches and then again, things in this area may be normal as well! And he PROBABLY will not have kids of his own due to being sterile; though I'm not sure this is so bad. There are men out there that are sterile and who are not XXY so why should be more devastating to be sterile and XXY?

My son is a Mosaic meaning some of the cells in his body have a normal 46/xy karyotype while others have an extra x chromosome (thus his official genetic signature is 46XY/47XXY) Only about 10% of the boys have this pattern. In general, these boys have fewer clinical features and these are less severe. About 30% of them are able to produce a normal number of sperm so that they are able to father children. However, even after reading, studying, talking and researching the subject about typical XXY's from top to bottom I still found nothing so terrible that had I been diagnosed during pregnancy that I would have ever considered abortion. The part that I find so interesting is that 1 out of every 500-1000 males are born with this (and some reports show numbers as high as 1 in 400-500) and go through their lives without ever knowing they have the extra chromosome. What this tells me is that a lot of the things associated with XXY or Klinefelter’s can go unnoticed, not be there at all or be mis-diagnosed to a multi-tude of other disorders that effect the XY population also. I am not in denial and I am not being unrealistic. I have done my homework (LOTS OF IT) and I am fully aware that there can be manifestations and some difficulties. As for the possible behavioral problems I hear people speak of...I have yet to see any evidence that this is caused strictly by the extra X and actually so what if is? No one EVER said that parenting was supposed to be easy. Every child needs boundaries and rules and regardless of their genetic makeup each child is going to be different in what works and what doesnt in parenting. What I see is that there may be other problems such as learning difficulties and, if they go unattended, it could cause frustration in the child which in turn could cause other problems. Same would be true of ANY child having difficulties and not getting help or getting help for the wrong things. Charles Manson is a behavioral problem and there is no indication that an extra X chromosome caused that (smile).

This is what I see in my(at the time of this writing) 3 month old baby boy. He cries, laughs, smiles, chatters, fusses, sleeps, plays and flirts. He is friendly and smiles at everyone. He has colds and colic and, YES, he EVEN has to go to the pediatrician from time to time. I have an 8 year old son as well. Does my new baby act any different then my first? Yes he does. He sleeps better than my first one did! That's It. I have a very happy little baby and to even think that anyone would abort a child such as this makes my heart ache. Am I scared? No, I am prepared. I love my child unconditionally and nothing will change that. This may be a challenge and it might not, but, either way, I'm in this for the long haul and I will be here for this child no matter what. Did I see the study done in the prison? Yes I did. Let us remember that 1 out of every 500-1000 males are born XXY (or a variant). That is, in my opinion and in comparison to other disorders, extremely common. I could go into that same prison and find just as many men with diabetes or blue eyes for that matter. Since these men are, in fact, in prison, is it safe to conclude that Diabetes or blue eyes can cause an increased chance of criminal behavior? OF COURSE NOT! Any rational adult could figure this out if they would just take the time to look at the numbers involved. Those studies were done in prisons because it saved expense. Another point is that you could go to a monastery with the same amount of men total, and you could find roughly the same numbers. The other thing to remember is that the majority of the XXY males involved in those studies did not know they were XXY until the study was done. This means that their parents and teachers did not know either and if they had XXY related problems, they were chalked up to something else and never dealt with. This could and would cause low self-esteem which very well could be responsible for their behavior. Early diagnoses can help to remove this tragic factor from the picture and allows us to help this from being an issue. Those studies have, since then, been proven to be completely insufficient for the same reasons that I have just stated. What I have learned from all of this is that NO one on earth is perfect and out of all the things that COULD have been wrong with my son...in comparison...this is Minor!! One mother that I have spoken with thought that her son had a different disorder and when they got their test result's back she said "Thank GOD it is ONLY Klinefelter's"

I would encourage mothers and fathers alike to do their homework before making any serious decision that they have to live with throughout their lives. It seems that the dads of XXY boys have their own set of issues to deal with regarding XXY and my advice would be to talk to other dads of XXY boys. Your pediatrician may not be able to tell you much. Even though this disorder is very common, in most cases is goes un-diagnosed until puberty or later, if ever. This is responsible for the fact that alot of doctors have little or no information to offer. Take the time to find someone who does. Contact Klinefelter Syndrome and Associates or AAKSIS. Talk to genetic specialists. Talk to XXY men or other parents of XXY boys...but PLEASE make an informed decision because it will have to be the one you live with the rest of your life.

Terrin

By the way, in case anyone is wondering how my son and his dad are doing? GREAT! My husband also took the time to research with me and feels as I do! They have bonded very well and even play together in the water which my son loves. As for this son not being able to carry on the family name? So what!!! If he hadn't been born at all or had been a girl he wouldn't be carrying it on either so of the choices I would say we shall enjoy our son and raise him to be ALL that he can be and expect nothing more from him.

UPDATE: Age 8 months. He is saying “mama” and “doggie” and “daddy” and a few other words which means he is right where he should be in his vocabulary. He is crawling and pulling himself up to standing and walking along the furniture so he is slightly ahead in his motor skills. He has slept through the night since he was just a couple months old. He smiles at anyone and everyone who has ever met him remarks on what a happy and social baby he is. A woman the other day asked us “does this baby ever stop smiling?” He is the size that he should be in both weight and height and has passed each milestone right on time or even a bit ahead. We have seen nothing out of the ordinary so far. He was examined by the specialist’s at the Seattle Conference for Klinefelter Syndrome and they had nothing to report. All is well.

UPDATE: 14 months. He began walking at 11 months and has a huge vocabulary. He has a wonderfully cheerful disposition and everyone STILL comments on what a happy baby he is. He is very very social and talks to anyone and everyone that he sees. There is no motor delay (he is actually ahead of his age group) and no speech delay (his vocabulary is advanced and he talks constantly). There is nothing out of the ordinary about this child. He was over 8 pounds at birth and has remained in the 25 to 50 percentile. No health problems. He is very smart and very fast to resolve problems (such as how to get inside the gate to reach the television buttons or how to build a ladder to get to the shelf that the remote controls sit on) and has rarely a fussy day. He sleeps good, eats good and it just a joy to be with. Friends and family ASK to baby sit him because he is just a lot of fun. Every aspect of his mental and physical development is just right.

UPDATE: 20 months: He still has an incredible vocabulary. He jabbers constantly and people laugh because he puts his hands in motion when he is talking to them and it seems that he really thinks he is carrying on a conversation. He was calling Daddy Daddy until one day he heard me call him honey and now he calls Daddy, Honey. He runs to the door when he thinks his Daddy is home and yells "Honey, Honey". He is still very social and in the grocery store he actualy got applause because on the way past all the check out counters he was dancing in the cart (sitting down of course) and waving at everyone and yelling "Bye, Cya...Bye, Cya". He is very musical and dances to everything. Doesn't matter what he is doing he will stop and dance to a good tune. He enjoys the Big Comfy couch and he excersizes with Luna the clown each morning and then tells her "Bye Bye" when she is over. He gets along very well with other children, shares and talks to them too. He has a mouthful of teeth and has seen a dentist for a check up and he looks great. He has never ever been put to bed with a bottle. When he is ready for "nite nite" he tells you "nite nite" and then waves to himself and you know that is your que to put him to bed. He smiles as you cover him up and he goes right to sleep. Has never given us trouble with bedtime. He is very active and healthy and STILL nothing out of the ordinary. He talks on the phone and his vocabulary equals that of my nephew who is 2 1/2.

UPDATE: 3 Years: Nothing notable in regards to XXY. He was checked out by T.A.S.K on his second birthday and at that time was a head of his peer group in all areas including speech, language, fine and gross motor skills. In July of 98 he was seen at a Medical Conference in Los Angeles and the focus of that conference was XXY (or variants) and he was seen by several different types of professionals all of whom are very versed in the areas of XXY. Nothing noted. He is fine. At the age of Three he was followed up by Child Find and again....ranked properly for his age group in all areas and was still a head of his peers in some catagories such as fine motor skills. He is three years old and EVERYONE who encounters him still has this odd attraction to him. He has the ability to draw people to him. Total strangers will stop to talk to him and he is very outgoing and very friendly. We still have people who ask to baby sit him because he is so much fun. The day care workers all have commented on his sunny and pleasant disposition and he is always happy. This child has been very easy to raise and a complete joy thus far. He tells me when it is time to brush his teeth and when it is time to go to bed. He goes to bed quietly and has never given us a bit of trouble. All in all this child has been much easier than most and anyone who deals with him on a frequent basis will tell you that same thing. I have followed closely and watched carefully and recently had the honor and pleasure of having a meeting with Bruce Bender PhD and Mary Linden, MS. If you have read any of the studies done by Dr Arthur Robinson, MD then you know that those people are the two of the worlds leading experts in this area. After that meeting I walked away knowing that it is time to put away my microscope. This little boy is a little boy in every sense of the word and I have waited and watched for something to happen it hasnt. At puberty we re-evalute but meanwhile.....this kid is the light of my life and that is not going to change! I hope the everyone is lucky enough to experience a child like him. He will touch your heart.

UPDATE: 6 YEARS OLD - This wIll be a long one.

I continued to have my child checked by Child Find and T.A.S.K each year in order to remain on top of anything that was presenting itself. At the age of 4 I pointed out to them that he was still using descriptor words in conversations. Now while no one else noticed this, I did because I was looking. He would go racing through a conversation and would not miss a beat but would use words to describe a word instead of the actual word. A friend of mine who is also in the human service field and has experience as a counselor and also just happens to be XXY adult, told me that my child was only learning to compensate and that was a good thing. When I pointed this out to Child Find they did take notice and do some additional testing. They found that my son had an ever so slight auditory delay and had difficulty sitting still (he is very active) which at times made testing a challenge. They saw him twice and determined that there were mild language delays but that he would qualify for pre-school with speech intervention. Now note that no one who knew my son or interacted with him at that point ever noticed anything out of the ordinary. I could have let this go but choose not to because while at the age of 4 it was not causing problems, if it continued into later years it would so we choose intervention. He began the preschool and then two months later we relocated to another state. From here things got a little hairy for a year and half. I had to fight the new state to get him into another pre-school with intervention. They did an IEP and felt he did not qualify for Special Ed (well no kidding people) and the district we lived in did not have a regular day preschool that had pull out speech services. We fought the good fight for many weeks and they finally agreed to transfer him into the next district, which did have a pre-school program. 3 days a week he was in regular pre-school learning regular pre-school stuff. 2 days a week he was in a pull out speech class working on language etc. He was doing wonderfully. He was only supposed to be in that program for a 30-day evaluation and then our regular district was to repeat an IEP and decide what to do.

During this time I had a serious off road accident which put me in a helicopter being sent to a trauma center. This sent out lives into a swirling downward spiral. I was put totally out of commission while trying to recover and be rehabilitated. My husband and I began having issues in the midst of all of this and life was really rough at that time. My son remained in the program and our district totally forgot he was there. We tried to contact them and couldn’t get a return call. The other district where they transferred him tried to contact them to see what they were to do and they go no response either. Finally his teachers and the other district decided they were just keeping him because he was doing well and I was in no condition to fight the home district anyway. 4 months into the program the new district asked me if I wanted them to just proceed with his IEP. I told them to go ahead. We had the IEP and the teacher that had been working with him in speech said that she was very thankful for having had the 4 months. Reason being that had she just had him 30 days and done an IEP she would have missed something because my son had become an expert at compensating and overcoming. In the regular pre-school they had been learning to write their names. My son was not doing to hot at this. They eventually began to assume he was having motor skill difficulties and couldn’t form the letters right. Turned out not to be the case. He did not understand the teachers verbal instruction and rather then tell her he didn’t get it he just looked around at what the other kids were doing and he did the same. This meant that he was writing the name of the kid sitting next to him. They did not have assigned seats so he didn’t always have the same kid next to him. This meant he never got to learn one name. Had he sat next to the same kid the entire time he would have been writing that kids name and they would have figured this out sooner. SO now they knew the problem and were able to get him past it. They called this a cognitive delay. So now they had listed mild speech delay specific to auditory processing and cognitive auditory processing. So great, now we know what to work on and they began working on it.

He graduated pre-school and was about to go on to kindergarten when our home district informed me that for kindergarten there are no district transfers because our home district has kindergarten and pull out speech. I was unhappy about this because they had completely forgotten about my child to begin with. After a battle I lost and he had to begin Kindergarten in his home district. Day one we had a problem. The teacher in this classroom was very very different then the teachers he had up until now and she was not very understanding of that. She had a totally different set of rules. In her world you are NOT to tattle on others unless someone is about to be injured. IF you tattle you get punished instead of the person you tattle on. She expected that these kindergartners could evaluate and discern danger and whether or not someone was going to get hurt. Some kids can do this, others can not. Disability or not….some kids at that age do not have those kind of logic skills. Another issue was that she would give out hand stamps at the end of the day if the child was good. If the child came home with no stamp, it was his job to tell him mom why he didn’t have one. My son was not able to articulate this into anything that I could make sense out of most days because the reasons were too complex and most the time he, himself had not understanding of what exactly he did wrong. On some days it was easy like “Micheal hit me so I hit him back”. Well the teacher did not see Micheal hit, but she did catch my son hitting. Another thing about my son is that he is NOT subtle or sneaky. 10 kids in one room can be doing the same thing and it WILL be my son that gets caught every time! I was video taping the first day of school when they were lined up and coming out. The teacher had her back turned and the child behind mine was shoving him over and over again in his back. My son finally got mad and yelled, “knock it off” and shoved him back. Well naturally the teacher heard this and turned and caught him and whom do you think got in trouble? Of course.

So right off this teacher and I did not see eye to eye. I pointed out to her that her system of expecting him to be able to articulate to me the reasoning behind no hand stamp was not going to work. She argued that he was the most articulate child in her classroom. She not going to budge an inch on anything. With regard to the tattling, my son continued to get bullied by one boy consistently. When I asked him why he didn’t just tell the teacher he said because he didn’t get hurt and he would get in trouble for telling. We called an emergency IEP with this school right off. I demanded that the entire district (those who matter) be involved because this was the same district that lost my son in a huge void the previous year. So in this meeting is head and they decide to do their own IEP. The principal tells the teacher that she is going to have to accommodate my child and understand that the school he came in from had a different set of rules. She was instructed to put together a booklet and each day write out anything that I needed to know about my child from that day. A week later they do their own IEP and find the same issues that they already KNEW existed being the mild speech issues etc. They did begin the speech pull out so at least now the issues that he needed dealt with were being dealt with.

I was still recovering from my accident, was still in physical therapy and trying to make sure that my child was being taken care of properly. The booklet began to come home from the teacher each day. Each day she had some negative comment to make. She ALWAYS had a problem with him. He was busy, he was talking, he was pushing, he was not listening, he was messing around in the bathroom. He keeps fighting with another boy (guess who it was? Yup the same kid who had bullied him on day one ON TAPE). On and on and on. Then I began to write back pointing out that she had this set up so that my child’s day was FULL of negatives. How was she going to use positive reinforcement if she couldn’t find anything positive. She claimed to adore him and tell me what a delight he was but he just needed to get some things under control. She told me that academically he was doing fantastic but behaviorally we were having trouble.

Less then two months into school I was called by the principal to come pick up my child. They told me that he had hit another student and that is not tolerated. They suspended him. He could come back the next day but was warned if it happened again that he would be suspended longer. They suggested that have ADHD looked into. Given the amount of trouble this school was giving me I decided to seek professional help to get an opinion on ADHD. We saw a psychiatrist who filled out a little questionnaire, read the book that had been coming home from the teacher and decided that my son needed to be on Ritalin. He gave us a prescription on Tuesday. I informed his teacher who was delighted about that. I did not start my son on the Ritalin right away because he had an innocent heart murmur when he was born and I wanted him seen by his regular pediatrician before I started it. He went to school on Wednesday and much to my total surprise the notes coming home that day were rave reviews. He was doing SO much better. Now this stuck me as VERY odd because he was not on the meds yet and this teacher assumed that he was. The following Monday we did begin the Ritalin and held out breath. Things continues to go well at school for the most part, or at least for a couple months.

Life at home had declined. My husband and I had separated and my husband had moved 3000 miles away. My son was feeling the effects of stress at home and it was showing in his daily life. The teacher had a bit of understanding for what he was going through in his personal life and tried to show a little compassion. In January I took him off the Ritalin because those of us who love him did not like the effect it was having on him. It was making him emotional and soggy (that is the word that comes to mind, sorry). We wanted out happy little busy boy back. He could be a handful when he was busy and I was still in recovery so he kept me on my toes for sure. But he was also very happy and well adjusted, he was just very determined. We did not tell the teacher we had taken him off the Ritalin. She finally stopped sending the booklet home on a daily basis and just sent it when something needed to be addressed. He continued to have trouble with the one kid so they were separated in class and on the bus. He had made good friends with another little boy who was a pretty good kid and the two did very well together.

In February I had to sell my house. I was very concerned about changing schools in the middle of the school year but I could not afford my house payment on a single income. We ended up moving several miles away and going into a new school district. My husband and I reconciled after over 6 months of separation and life was looking up. Things at home stabilized, my son was doing much better and he started the new school. I gave the teacher his last IEP and the booklet from the other teacher so she had all the information and we could avoid another IEP. She had the speech teacher pick up right where the last one left off and things were good. She called me in two weeks after school started and my first thought was “oh no, not again”. I got to the school, she handed me the booklet and said “that read like a rap sheet” and she laughed. She also said that she had NONE of the difficulties that the previous teacher had written about, none! She said that if she had read that booklet without knowing who it was about she would have NEVER thought it was my child. Now explain that? My son is doing fine with his preschool teachers and his speech teachers and then suddenly the kindergarten teacher paints a much different picture. Now a new kindergarten teacher and life is great? Well that was good news for my son.

Now I wish the story ended there but it doesn’t. My son began the new school in March and school is out in June. By April it was becoming odvious that the first kindergarten was not teaching grade level stuff. My son only knew 3 of the 25 site words that were needed to pass into 1st grade. He only had a few of the basic math skills down. I started calling parents from the other school and asking if their children knew these things and they said no, they had not been taught. They did learn some site words, as did my son but they were words like color names and number names. The ones needed for basic reading are words like come, my, is, like, the, will, said, have. You know, words that don’t spell like they sound and need to be known by site. The first kindergarten was not teaching these. This put my son way behind most of his class in the new school. The teacher wanted to help me help him catch up. She began sending him to another teacher during breaks to help him with reading. She printed up booklets for him to read every night at home and we helped him with those. He made great progress. BUT the end of the school year was very near and we had little time to cover everything that the first teacher should have been covering. I am sorry to say that trying to fit a full year of learning into a few months is hard even for the XY child. By the end of the year we had made leaps and bounds but he was still set up to struggle through first grade. The school did not wish to hold him back so they came to me and proposed a plan.

There are other school in the state that have a program called Transitional First Grade. It is not first grade but it is not kindergarten. It is full day just like 1st grade and they teach first grade material. The difference is that they start off with the stuff they should have learned in Kindergarten and work their way up to 1st grade stuff. This school does not have that program but the teachers were willing to address the school board to try to get it if I was interested. I struggled with this decision but in the state of California they do mandatory testing at 2nd grade anyway. They are also the only state to allow kindergartners to begin at 4 ½ instead of five. This means they not only have the highest kindergarten rate under 5 but they also have the countries highest 2nd grade failure rate of any other state! I agreed to the class. They approached the school board and were told that they could not have the class unless they had at least 15 children who would benefit from the class. They began looking and found that they had probably 30 who could. I questioned whether or not these kids REALLY could use a class like that of it the school was just pulling bodies to get the class. They showed us in a big parent meeting that the other kids really would benefit from this program and the showed the success that other schools have had with it. Other parents agreed to the class so it is all set. Next year my son goes into the transitional first grade.

He worked hard to catch up, we worked hard to catch him up and the teachers at the new school jumped through hoops to help him catch up. It is tragic that the kids in the first kindergarten class will go on to the 1st grade without missing a beat UNTIL their parents have to take them to a new district for one reason or another and then learn that their children were not taught grade level stuff.

By the way, my 8th grader had the same experience when leaving the first district. He got to the new district and found that the Algebra being taught in the old one was actually pre-algebra and he began failing algebra in the new district. Within 2 months he had gone from straight A’s and B’s to straight F’s. He had to fight and study study study to get his grades up to even passing because he did not know the 8th grade material. In his case (and he is XY) he had already put enough time in the old district to have passed the 8th grade anyway so the new middle school didn’t care that he dropped. We did! But he fought hard and he studied and worked and got his grades up from the F’s. Tragic when an entire school district allows this to happen.

The moral of this story is that XXY or XY makes no difference. Pay attention when your kids are in school. Keep up to date on what they SHOULD be learning, not just in your school but in the world around you. It is very very sad that my small son had to struggle like this due to the failings of one teacher and a district that didn’t care.

As to the effects of XXY on my now 6 year old. Could have contributed to his behavior, who knows. What I do know is that his Awanas teacher at church was so attached to him that when he thought we were going to move away he was genuinely saddened and would have missed my son a great deal. He enjoyed having our son in his class and was thrilled to find out we were staying nearby enough to continue at our church.

I think the next section of this web site will be writings from other people who have dealt with my son. I realize that reading the perspectives of parents can be helpful to you but I have also found that hearing from the non-biased is of help as well.

Look forward to that coming next.!

UPDATE: 9 YEARS OLD -Kids will be kids.

I think we left off with Transitional 1st Grade. Well, the program failed miserably. I am sure that given time to develop, it will be great but since the school was just starting it, it was not good. The school also LOST my son on three seperate occasions. LOST HIM! Once he was found in the 2nd grade classroom, once he was found in the nurse's office (where they had sent him) and once they put him on a school bus, ignoring his protests, and shipped him to downtown. My son is not a bussed student. The little boy who was supposed to be on the bus was found crying in the office (where my son should have been waiting for us to pick him up. The school explaination for this? Both boys are blonde headed and blue eyed and look similar and they simply made a mistake. I was expected to understand this? Sorry, I guess I am just not that understanding afterall. We ended up in a school that specialized in ADD and ADHD and it was wonderful. The school couldnt stay afloat and ended up closing and my son, once again had to change schools. This happened three more times after that. After spending many years fighting the California school system (which I might add is among the worst I have seen) I have finally given up. The struggles with the schools became a never ending battle. In regard to XXY related issues, there were or are a few that relate mostly to lack of impulse control. Is this un-manageable? Hardly. However, that having been said it is CRUCIAL to have the support of the school system and teacher and if you don't, then move on quickly! My son was transfered several different times and it took until 3rd grade to get the right mix of teacher and principal support along with the district office support. We ended up with an extremely supportive district psychologist and with his help, I was able to get my son taken out of the school system last December and he was placed on "home choice". This meant that the district continued to offer speech and language support, resource reading and counseling as needed. They also provided me with the cirriculum being taught in the classroom and a teacher to meet with once per week to chart my son's grades and work. My son quickly turned around, became a model student and began to excell in math. Within 4 months of having him on home choice, I had him completely off his ADHD medication and he was working on self control for those issues. He received excellence in math awards from the math teacher in the class that he attended on campus. He has many friends, some of which are long time friends from Kindgergarten and pre-school. They see each other on weekends and outtings and talk on the phone constantly. This boy is extremely smart and quick witted and has stunned his teachers with his problem solving skills. HIs ability to compensate for things that do afflict him, is amazing. For example, his speech delay. If you recall from prior postings, it took professionals a very long time to spot them and only after spending much time looking. It was one of my XXY friends that helped me to understand what was happening and I was then able to point it out to the professionals who then went "ahhh, I see what you mean". So I continue to value the advice from the men far more than any professional I have yet to encounter. If I were to offer once solid piece of advice it would be this. Make friends with the Men, listen to their advice for the are the voice of experience. I had mentioned to my friend that my son was using discriptions instead of words for many things. For example he would say "the dogs are woofing" or "where is my water bang bang" (instead of water gun). This had gone on for years. Once I talked to my friend he said that many of the men, himself included, have a hard time pulling up the right word and the right time and many find ways to compensate for that. He, for example, will have pauses when he is speaking, buying himself time to retrieve the correct word. Other men who deal with this will use filler words like umm and uhh in the speech, again compensating and buying themselves time to find the correct word to use. My son has found another compensation method, instead of stalling or using umm while he gets the right word, he chooses to use its description rather than delay what it is that he is saying. He is a quick talker and has no time for delays so he compensates. Amazing that he discovered this on his own, and that many professionals did not nail down the reason. I have said from the beginning that what you can learn from the Men is going to be a far greater asset to you and your son. Listen to them. While not every XXY has the same issues and outcome, the similarities are enough that there is great benefit in their knowledge. My son currently has many struggles but that is due to an upside family life at the moment. My husband and I are divorcing and my son is a Daddy's boy. Having his Daddy gone has been devestating to him and he struggles with the emotions of dealing with that. We went through a very rough time recently, related to that issue and it took a lot of love and patience to see him through but he is doing great now. He is not medicated, he is working hard to handle himself and most times is very successful. We have moved back to Colorado and he will again be returning to the schools. He has a much greater chance at educational support here with far less battle. There is something to be said about living in the land of Bruce Bender and Mary Linden, the school seems to be better educated. We desperately miss our church family back in California and my son is like a fish out of water on that issue but I am sure we will find a new church home here. My loves to swim and play basketball and he is a wiz on the computer. He earns computer time by learning sight words. For each word that he spells and reads correctly, and can use in a proper sentence, he earns 15 minutes of time. He is also using the token economy. If you don't know what is, I recommend learning about it. It is an excellent system that teaches pride and responsibility for your child. I have used this system even with my 17 year old and it is amazing. He is quick to defend his Mom when he thinks that I am being treated unfairly, he is always sure that I get a morning hug and kiss and another before bed. He knows that I am struggling too, and he is right there to be my awesome, special little son! I wouldn't trade a day with this child, not even on our worst day! Knowing that your child is XXY does give you things to get an early start on. My son hates milk and knowing that calcium intake is important, we have always found other ways to get his calcium in. Also knowing that lack of testosterone can further complicate things in regard to bones and calcium, this became an important opportunity for me to do what I could early. Another benefit of early diagnosis. We currently use a calcium/magnesium supplement called Cal-Absorb which also has vitamins C & D. This is a wonderful product. No, I don't sell it and this is not an info-mercial. Just passing on a bit of information for others who may have similar concerns. Look into it.

UPDATE: 10 next month-When life pushes your son, push back!

We have been back in Colorado for many months now, and my son has been back in the regular public school system since August. This is December as I write this. He is no longer in a special Ed class, he is in the mainstream 4th grade. The school and the staff have been great. SO different from the California school system, it has been like night and day. He does have some pull out services where he leaves his regular class to go to resource reading and social groups and other cool things. He is doing fantastic. I rarely get bad reports home from school and the ones that do come home are regarding frustration, which they are also working on with him and he has found other ways to express when he is frustrated. He was nominated by his class to be "sign gaurd". The class learns sign language and every monday my son stays after school to learn the new signs for the week and then the rest of the week it is his job to teach those signs to the rest of the class. He is very dedicates to this task, dont even THINK of picking him up early on Mondays. He is back on Concerta during the school days, by his own admission, he focuses a bit better and can tune out all the distractions of such a large class (he is used to 8 or 10 kid rooms and now has 26). I do not give him the meds on off time or weekends and he does well. At home we are still using the token economy system and last week he bought himself a pair of well needed snow boots. The last two years have been an emotional rollercoaster for him with his dad disappearing from his life. He has always been daddys boy and it has been a rough ride for him. We are now divorced and parental rights have been terminated so the rollercoaster ride is over and he is starting to heal. He misses his dad and he talks about his dad but we no longer have the huge up's and downs each time his dad is in and out again. Stability is SO important to boys like him and knowing that we make sure to keep routines. My advice from experience is still listen to the men, even when and if they tell you something that you don't want to hear, it gives you such great insight to possibilities and things to intervene on. Unconditional love is the greatest thing that you could give to your child, no one is perfect and no one is the same. We are made the way we are for a reason and embrassing those differences makes strong, healthy and accepting human beings. When life pushes your child, you push right back!