Hi all. We recently found out our son has FX - three months ago, almost. He is two. Although he doesn’t display any different from other children his age (besides not speaking), I have found that my friends are starting to request that I leave my son at home while visiting them.
The reasons vary, but I have begun to suspect it’s because his behavior is becoming more apparent as he gets older as ‘abnormal’.
Is anyone else out there getting the same feelings? Or, am I just being paranoid?
Granted, any two-year old is likely to be a disruption, but it’s just been lately.
Also, he is our only child, so I don’t have anything to compare it to, and, we are older first time parents- so all of our friends have older, grown children.
These are very close friends, by the way, and up until now, I thought I was handling the news very well.
Thank you in advance,
~OA
OA,
I know the feeling well. My wife and I have a 2 1/2 year old who has full mutation FX and he sounds like yours. He doesn’t seem to display different actions as others his age (also aside from not speaking)…until you really stop to notice. If you do, there are some slight differences that you can tell eventually become apparent to adults around him (other kids his age around him don’t really care…they just play with him). I know it will become more and more obvious as he gets older so we’re trying to learn to deal with it as soon as possible. We also have a non-FX 6 year old boy and a 1 1/2 year old girl who we still don’t know about her status, but she doesn’t really display any symptoms. When we compare our two youngest is when the differences become quite apparent.
Anyway I know how you feel about your ‘friends’ issue. I have brothers and sisters who probably would rather have us not take our son over sometimes…or at least that’s what it seems like sometimes. He can be a bit louder than the other kids and since he doesn’t speak, his means of communication can be annoying to those around him…especially adults. Now they have never actually requested us not to bring him and I’ll be honest with you…if they did I just wouldn’t go at all. On the other hand, if it is an activity or an outing that we’re pretty sure he will not enjoy because of the activity itself or the company then we will try to leave “ALL” the kids home, but not just him. Also, my son seems to be most aggressive with my wife, so if I know she will not enjoy herself at an outing because of this then I’ll offer to do a different activity with my son: just him and me and she can go by herself. You may try doing that and taking turns with your wife. It’s important to us to sometimes just take some time off from the stressful moments FX can bring. At least I feel we need to. So, no you’re not alone OA, for now just take it one day at a time and realize that your son may be a good litmus test for true friendship.
AL> To: aluis06@hotmail.com> From: fragilex-cpt8472@lists.careplace.com> Subject: [fragilex] Avoidance by friends?> Date: Mon, 7 Apr 2008 20:22:24 -0400> >
Thanks for your reply.
I was feeling really low when I wrote that, and quite frankly, I thought I was being paranoid- but in retrospect, I know I’m not.
The last friend that told me my son wasn’t welcome was because her dog (one of three) is going through heart worm treatment, and she thought that having a kid around would stress the dog out, since the dog isn’t used to my son.
But, my son is very quiet, and avoids all dogs. He just crawls all over me, not bothering anyone.
When she told me that my child wasn’t welcome while her dog was going through heart worm therapy, I said, “Yeah. Well, I’m used to this. None of my other friends want him around either. They always tell me to leave him at home if I’m going to visit”. She responded that she wouldn’t dream of asking me that if it wasn’t for her dog.
I felt really bad- believing the story of the sick dog, and I offered to stop by to bring her dog the huge dog bed I had, and a ramp for their porch (I left my son in the car while I unloaded this).
Her husband took one look at the dog ramp I brought over, and said “I don’t want that piece of s**t (cost me $150 from a specialty store- shipped) on my porch” - so, I guess the dog isn’t that sick, you know?
It broke my heart, because at that moment, I realized just how lame everybody’s excuses had been, too.
I am not naive enough to expect this from strangers, especially once he exhibits symptoms, but it hurts so much when it comes from friends.
This is the first time I’ve ever contacted a group about my feelings.
I was so upset, I cried all night, and couldn’t sleep at all.
Thanks again for your very helpful reply. It really means a lot to me to hear from others who are going through the same thing, and that I’m not alone.
IS THERE A LOCAL SUPPORT GROUP YOU CAN CONTACT? WE BELONG
TO THE FRAGILE X ASSOCIATION OF MICHIGAN,AND IT HELPS TO TALK TO OTHERS IN YOUR SHOES. MY SON ADAM IS 11 YEARS OLD AND IS FULLY INCLUDED IN 5TH GRADE,HOWEVER HE IS @ A K-2ND LEARNING LEVEL. WE WERE TOLD HE WILL NEVER LIVE ON HIS OWN,BUT WE ARE OPTIMISTIC.GOOD LUCK, AND ONE DAY AT A TIME.
MARK.
-----Original Message-----
From: ALuis fragilex-cpt8472@lists.careplace.com
Sent: Apr 8, 2008 2:02 PM
To: mmpopejoy4@peoplepc.com
Subject: Re: [fragilex] Avoidance by friends?
I live in Michigan.
Where can I join the local support group here? I really need some advice on how to get my son the help he needs. Children’s Special Health Care Services won’t help- and he needs speech/language therapy, and we are paying out of pocket for it, but we’re almost bankrupt!
Please, can I have the link?
Thanks so much!
WOULD YOU BE WILLING TO GIVE ME A CALL @734-320-9360
-----Original Message-----
From: onceagain fragilex-cpt8472@lists.careplace.com
Sent: Apr 8, 2008 4:54 PM
To: mmpopejoy4@peoplepc.com
Subject: Re: [fragilex] Avoidance by friends?
YES! Thank you so much!!!
WHERE IN IN MICHIGAN DO YOU LIVE?
-----Original Message-----
From: onceagain fragilex-cpt8472@lists.careplace.com
Sent: Apr 8, 2008 4:54 PM
To: mmpopejoy4@peoplepc.com
Subject: Re: [fragilex] Avoidance by friends?
I know how you feel about other people not wanting your son around. Since I’ve had mine, I have really dropped out of the social scene, but by choice. I know my son is different, and it’s just easier to stay home where he’s comfortable. I never have had any friends tell me they don’t want him to come over though. I think that if your friends, or family, are really serious about that, maybe they shouldn’t be your friends in the first place. Maybe they are just scared, and don’t know how to act around a kid with this weird sounding syndrome that they probably never heard of. The friends that I do have, accept how Aidan is, and don’t have a problem with it. Maybe I’m just lucky, buy if I had a friend act like what you’re describing, I wouldn’t want to be around them.
I would say that these people are not really your friends if this is how they behave. My son is my son and he will go were I go. If we are out in public and he has a strange behavior(like kissing a complete stranger" We say he is very affectionate. Mostly people get it pretty quick and if they don’t I just let them know he has autism (which everyone is getting very familiar with) as well as Fragile X. For the most part people are understanding and Avery has such an infectious happy personality complete strangers enjoy watching his reaction to new activities.
My family and friends are aware of Avery and his special needs. They accept him for what he can do and what he cannot. As I said if they didn’t we would not be friends.
We also do not limit his going out and meeting new people because of our discomfort or his. The more you expose your child to normal the more he will learn and adjust. We just got back from Orlando were we spent a week doing Busch Gardens and Sea World. He loved it and his siblings and cousins had a ball together. He did well and probably learned lots and he also learned how to better adjust to big crowdss and long hours and hot weather. There were trying times but they were all well worth it. We will strive to keep his life as normal and fun as we possibly can, not just for him but for all of us.
Mary