[proudmommyof 2]

The older Tommy gets, the more obvious to others it is that there is *something* wrong. Right now, we have diagnoses out the wazoo from the neurologist, but are awaiting the solid one from the geneticist which I think will be the root of the issues: FAS. Anyway, Tommy is severely delayed, physically, socially, and with regards to language. He’ll be 3 in March. However, since he’s so tall, he actually looks older. I’ve learned that when a stranger approaches him and tries to talk, I’ll let them figure out on their own that he doesn’t talk. I don’t feel the need to go into detail, or even give generalities, about why he doesn’t talk. Not sure how to handle this with acquaintances, though.

We were at a party on New Year’s Eve with some high school friends and their kids. We haven’t seen any of them in over a year, so many of them don’t know much about Tommy. One friend was trying to talk to him, and asking him questions, and I finally said, simply, “Tommy has some special needs. He doesn’t talk yet.” Her face turned really red, and I think she was embarrassed, like she was prying or something. What is a nice way of conveying this: “Tommy has some special needs. We are so proud of him and wouldn’t change a thing about him. He’s getting the help he needs” She was a little awkward with me for the rest of the night. I don’t think it was pity or anything, because then I wouldn’t worry about it. I really don’t want to get into things that are wrong with him and services every time it comes up. How do you simply and lovingly explain to someone, so they know that we’re not ashamed, but that we want to focus on Tommy, and not his disabilities?

Then, the second part of the question: dealing with someone who is very superior about the whole thing. There was a woman there, who I’ve never liked, who has a 2-year-old girl. I didn’t feel the need to tell her anything about Tommy. But she kept saying “So he’ll be 3 in a couple of months?” Her daughter, Kaitlyn, is obviously talking in sentences and walking much more smoothly then Tommy, who was in new shoes to fit his braces and kept falling. Then she’d rephrase it and say, “So Tommy is almost a year older than Kaitlyn?” She never came out and said anything outright, or I would have ripped her heart out. So she drew attention to all at the party of the comparisons between Kaitlyn and Tommy, and it sure doesn’t help that Tommy is tall and Kaitlyn is petite, and that he towered over her. She was obviously enjoying the fact that in her mind, she parented her daughter so amazingly that she has surpassed much older children. Ignore people like this? Confront?

Understand, as I’ve said, these are acquaintances, so I’m not really looking for how to deal with these specific people, as much as for how to deal with the situation.

Lastly, dh really disappointed me. He is a loving, proud, father to both boys always. Sometimes, though, I have to fight him to agree with me about seeing a different doctor, meeting with a different special needs learning center. Sometimes, I think that he sees that Tommy is learning and progressing (and oh my goodness, is he ever, on his own timetable!), and wants to believe this will go away. At the party, a 3 year old called Tommy a cuckoo-head, and Tommy thought this was hilarious, so my boy who won’t talk, but will sometimes imitate, spent the rest of the night getting in all of the other kids’ faces and saying “Coocoocoocoocoocoocoo.” They very quickly tired of it, and we removed him to distract him, fed him, played with him separately. My boy, who happily smiles when getting another shot because he forgets that it hurts, didn’t forget to go right back to saying “Coocoocoocoocoocoocoo” at everyone again. dh has been fighting me about finishing diagnostic interviews with an institute that deals with autistic children. I don’t necessarily think that Tommy is autistic, and I know that FAS and autism really mimic each other, but I can’t really rule out PDD either. Am I looking for another label? Absolutely not. We have enough, thank you. Am I looking for more information and ways to help Tommy, always, always, always. Other kids don’t want to play with him, and he has no interest in them. If I can help him to learn to have friends, then I can guarantee him a good life, regardless of his education level. Anyway, dh has been fighting me on this, and finally, alone in the basement (we were trying to let Tommy run off some of his energy), he said that he wants him to continue with the diagnostic process. It frustrates me so, though, because I see Tommy’s potential, and I see him growing, but I realize it’s not going to be fixed in a year or two. It’s like I have to convince dh that something is wrong with Tommy every few months, because it’s almost like he falls back into denial. How do you think it makes me feel, to constantly be telling him, “No, he’s not fixed. No, he’s not going to be out of services soon,”, when I’m thinking to myself of all the potential this kid has and hoping that everything will be fine.

Any advice would help. How to deal with people nicely who don’t know? How to deal with jerks who don’t know? How to deal with a dh who goes back and forth between acceptance and denial?

Thanks so much!

[DET62]

I am so sorry to hear you are going through this. I wish I could offer some concrete support, but I can't think of much.

My experience with men is that they often will be in denial about things that are emotionally difficult, and there's not much one can do but hope they turn the corner into acceptance soon. My brother didn't really accept that my father had cancer until Dad died in his arms. It was much worse for him to deal with it than it was for me.

I am struggling with the FAS/FAE things too, even though my daughter's FAE effects are mild. Part of me wants to explain about it, part of me wants to deny it or keep it hidden. The only thing I know to do right now is limit who my daughter interacts with, to folks who won't ask awkward questions and/or embarrass her. With your son, the effects sound more obvious.

Perhaps when folks make awkward comments you could smile and say "All kids walk and talk on their own timetable, and he is a bit delayed because of being in an orphanage" and leave it at that? I didn't talk much at all until I was past 3 years old. I believe I read somewhere that Thomas Edison did everything very late and his parents thought he was mentally challenged for years.

Hang in there!
Dee

[Amysue1112]

HI!
FIrst of all, I think you are doing a great job as a mommy and fighting for your child. It is so hard with your spouse does not see what is going on, but some people take longer to accept that a child is not "perfect"...and it is pretty hard to convince them without being a nay sayer....I think I would just be like "honey, I know you don't think all these thngs are wrong..and maybe you are right. But I believe there are more problems and I want to make sure we don't miss anything. Services will do nothing but help him, no matter what the degree of problems". If you can get him to at least accept that YOU feel this testing/treatment is needed..even if he does not agree with you, I am sure in time he will come around. B/c I used to work at a nurse in Peds, in my experience, it was not uncommon to see a dh not "on board" with diagnoses. Some men seem to feel that mommies are "babying" or "paranoid" and figure once you stop "messing" with the child he/she will be just fine.
It is not as easy situation, but you are not alone in the struggle with spouses that don't completely "get it".

As far as telling people....well, I think it changes depending on the person. I was born with a major facial deformity, so it was impossible for someone NOT to notice that I had issues. I don't exactly remember how my mom dealt with it when I was very small, but when I was older, I remember hertelling people exactly what was wrong (in a very short version of course). she found and I found growing up that most people are just curious, and usually being honest with them satisfies them and they go on to another topic. By my mom telling people what I had, it helped me to see that she was not ashamed of me. I was different YES...I had issues YES...but my family was proud of me and loved me for me and that is all that matters.

I don't think you have to give dianoses, which is noone's business...tell what you want...but it may stop the "does she not see there is something wrong?" chatter.

Sadly, there will be jerks that make you and Tommy feel bad. ANd there will always be parents who think their kids are the smartest no matter what. But how you deal with people like that will teach your son how to deal with it.

I was just trying to think of "what" to say to make it a positive...
Maybe "our Tommy has some developmental delays so he is not talking yet....but we are so proud of the progress he has made..he is such a wonderful child and such a blessing".

or

"our Tommy has some challenges but we are working on them...he is such a wonderful little boy and we are so proud of him."..

I don't know...I suppose you have to go with your gut...

but just to let you know YOU ARE DOING A GREAT JOB! It is so obvious how proud of him you are and how much you love him...that will help him to go farther than any service you could get him.

Thanks for coming here and sharing with us...we are here anytime you need support.

[1moretime]

I also think you are doing great.

As for the mom who thinks her child rocks the world. As hard as it is, and believe me I know, let it pass. Everyone was probably as sick of hearing her compare as you were. And they were probably in the same boat with this mom at one time or anther. It is amazing how many people, friends included, who make it a mission to compare their "perfect child" with yours, whether it be bio or not. Also, if your chid is on track with milestones or not. You know, this may be her way of obtaining self-worth by comparing, her way of praising herself. It is frustrating but take a breath and remind yourself your family is doing great and she needs some manners.

As for talking, my 21-yr-old who is a senior engineering student didn't talk until he was 3 also. He is still on the quiet side. (his little brother drives him crazy because he can not keep quiet, he even talks in his sleep!) I became concerned and did seek serivces but when it clicked for him he became very talkative. Remember also, Tommy has an older brother who probably does a lot of talking for him so even with other issues, he may also be using his big brother to his advantage. I think if anyone asked, I would just tell them he is quiet and leave it at that.

As for your husband, I can understand your frustration. Maybe he just hopes that things will work their own way out. We've all done that. A lot of things have been put on your plate and it takes a while to process. But sometimes you need to get the help. Once diagnosis is made and therapy begins and progress is made that may make things easier.

Best wishes to you and your family for 2007

Nancy

[GCS]

Let me echo the "you are doing a great job here!" sentiment!

I understand about your DH having a harder time getting where you are with your DS's needs. You are right in letting him get there in his own time. We've been home 2 years and are just getting some testing done we really should have done a long time ago. But DH wasnt ready to go there and there was nothing compelling going on to force us to get this help. I am glad I didnt push it with him.

Its a little frustrating when DH has an "aha" moment and comes to the same realization I have been telling him for more than a year, but I just let him come to it on his own so he can be more comfortable with it. I am sure there are things he sees that I am blind to as well. Well, maybe not...

I have found that just touching the person who is feeling embarrassed after commenting on an issue is helpful. I usually say something like "please dont worry, I couldnt be more happy with the way things turned out" (which is completely true!) with a pat on the hand or arm to put people at ease. Sometimes this opens up more dialogue about the issue and sometimes it ends there. It is easier for me because I am not referring to my kids but to my own health issues, but in the end it is the same - putting people at ease because they feel they put their foot in their mouth.

All the best!
Christina

[amyfk]

Dear katrina,

Unfortunately I don't have any answers for you, I just want to wish you best of luck with getting DH on board and with getting the proper dx and services for your son.

Sincerely,
Amy K, NJ

[ddahl]

Let me just say that as mothers, there are things we see and accept that others cannot, sometimes others include spouses. A mother just knows. I think its a genetic mommy thing. Dh may be suffering a bit or having some grief as well. Try to be patient, hard I know but maybe you will have the opportunity to have more basement time soon. Basements are good places to let ones heart out as well. Its safe, secure and when you just have each other there, its a bit less scary than admitting it say, in the living room or with a group of people.

As far as explaining him to others, I am a bad one to ask or even give advice but as you know, I will give a bit. I think when we explain our children to others that it strips a bit of our heart and dreams away. Our dreams for our child and the dreams we had for our selves with them. I would not explain but thats me. I will give you an example... People ask me all the time what DS Russian name is. I simply say" That is not something we discuss outside the family". I leave it at that. Often they look flustered and I have stopped trying to make them feel better. Frankly what the heck happened to the parameters surrounding just being in good taste? What difference does it make to them what is birth name was? Do they know people in his own neighborhood? Freaking ridiculous I tell you!

Can you find a mommy group with other moms that have fabulous children that may have some mild developmental delays? It might be a good way to socialize DS and it my give you a more sensitive group of women to bond with.

I am proud of you for championing your son, his care and for not closing your eyes to the future. All children, no matter what the issues are have potential. Continue to fight for him. You are the best thing he could ever have. Hugs to you!

[his,mine&ours]

I think for people that haven't spent time understanding "special needs," just the term can be scary. Maybe a more generalized opening such as AmySue suggested would be helpful for those that you'd like to give an explanation to. For the other - you are a better person than I am for ignoring her. I think I would have had a smart-alek response for her!

Good luck to you with DH and the services. I know that I benefit so much from your posts, your honesty and your sincerity in looking for the best answers for your kids. Thanks for sharing so much of your life with those of us that are waiting and trying to be prepared.

[proudmommyof 2]

Thank you ladies!

The only reason that I shy away from saying that he has FAS, is that people tend to want to give their opinions about it. For example, when getting Tommy's blood drawn, the woman doing the registration asked if he was adopted (he had his diagnosis on the script). Then, in front of Dennis, she started to tell me how awful it was of that birth mother to drink and cause permanent damage. Other peoples' opinions of her don't matter to me, and I certainly don't want Dennis to hear this and wonder about his own past before he's ready. Whatever events led up to his being my son happened, and thank God they did, because then he might not be my son. KWIM? Other people don't understand that, and what they see as "small talk" or sharing their opinions are things I'm trying not to let Dennis (and in the future, Tommy) hear.

Christina-you hit the nail on the head. Dh is on board, starts to deny, and then has an AHA moment. This all happened in the basement of the friend's house! We were alone, with the boys, of course. I made him promise that he'll just believe me next time when I say Tommy needs a test, service, doctor, etc., but I know he'll forget. I think what got to him was the coocoocoocoo thing. Also, it's not just that Tommy-bear doesn't talk. He screeches and flaps his arms and really does call attention to himself, so he's beyond just being a late talker.

I love the idea of just letting someone know that we're happy with the way things have turned out, or saying that his smile says it all. He is such a happy little devil, and has a smile that melts across his face (the only way to describe it).

We are in the process of finding support groups, child and parent, to join. Again, dh really thought this was too much until the party (seeing kids around Tommy's age does it every single time). We've even found a sibling support group for Dennis, if he needs it as he gets older. I worry about him too in all of this. But Dennis is also turning this into an advantage. I have noticed that Dennis is much more patient and tender with disabled kids then others his age, and is very accepting of everyone. This will certainly help him in life.

Thank you girls!

[Abdulina]

Katrina,

I am SO right there with you in all this. It gets old explaining stuff to people and frankly, I really don't want to. It is hard b/c it is so obvious for some of ours that something is not right. We live in the south so shorts a good chunk of the year. Bojan does well at explaining about the prosthetic and handles it his own way. Tells about it and then just wnats to get on w/ playing. Some will leave it at that and then some folks will just keep on w/ the how'd it happen, why were you adopted, what about your real parents(oh, does that one really burn me to no end!), etc. With Nik, I'm tired of explaining to everyone who tries to talk to him that he is deaf. Tired of people giving me nasty looks when I'm screaming in his ear (literally) to get his attention. Nik can hear really loud sounds in his one ear. With Alyona, I discipline her b/c I need her to act her age. Though she looks like she is 3yo, she is 7.5yo and needs to be treated as such. Despite what acquaintences say and such. It's fustrating b/c I really don't wnat my life story out there or my kids' story for that matter. Yes, I talk about adoption and do some speaking here and there occasionally for the agencies or such. But our family life is our family life and I don't want to explain every single time. Yes, they are different from the other kids, but why should I have to explain? And why on earth are people so dog gone nosy?

Katrina, I have no words just my support. I know exactly how you feel. Right now, we are contending w/ where we want to live for the rest of our lives. Services here suck. And nothing for FAS kids when they get older. Hence, why we want to start some type of work foundation. Crazy. I used to be the one in denial saying they CAN do it, they WILL be able to make it. I now have a daughter who just turned 14 but is more like 7yo. Reality has sank in. It will take your husband a few years just like it did me. It's not b/c he can't see it, it's because you so want things to work out for your kids. No matter what the dx. I wish you all the best.

Stay strong my friend,

[Sally26]

I think you are handling everything with grace and intelligence.

It's frustrating when a dh is not on board. The only piece of advice I can give you concerning his denial is the next time you need to get a test or need a service for Tommy is to tell dh, "I know you don't see the need, but I do and I need your support." You might want to tell him what a child of the same age is supposted to be doing since he can see things better when Tommy is around other young kids. Or approach dh about a service/test after having found a situation where dh has seen Tommy with other kids. He may go in out of denial off and on in the future. I've seen it a lot being a Special Ed. Teacher. Teacher to parent is a much different role than dw to dh. I try to tell parents nicely and matter of factly what they can hope for and what might not be achieveable, but that helping a child be happy and as independent as possible is the goal.

I would tell anyone that starts to discuss FAS in front of your children that you appreaciate their wanting to share, but that it's not something you want discuss in front of your children.

Someone that wants to compare Tommy to their child, "I know you're proud of __'s accomplishments, We're so proud Tommy's accomplishments! or I know you're proud of __'s accomplishments, We're so proud of how far Tommy has come!"

Depending on the situation, I don't know if I would tell other people trying to talk to him anything. Lots of 3,4,...10 year olds don't talk to people they don't know well.

I'm glad that you are finishing diagnostic interviews with an institute that deals with autistic children. Some of the behaviors Tommy exhibits do sound autistic like and even if he is not found to be autistic they should be a good source to give you strategies for teaching him. Whatever the diagnosis I know that Tommy is blessed to have you as his Mommy and he will achieve his potential with you guiding him.

On the bright side, I taught a child that was given many labels as a toddler, by the end of elementary school he tested gifted on a nonverbal IQ test. He didn't talk at 3, but by elementary school when I worked with him he talked, read on grade level, did math above grade level and was a joy. He still had trouble interacting with peers and flapped his hands sometimes, but by the time I got married he was playing in the band in high school and taking karate.

[lovestruck]

I have not read all of the responses, but I did read both of yours. I know very little about FAS, but I have a friend who has two children with autism. He sounds like he has a lot of the autistic traits. I personally think that a firm diagnosis of FAS or autism would be beneficial because I think you would approach the two very differently.

As for comparing, I am constantly amazed at the need for parents to compare their children to others.
I have a friend who regularly comments how her almost three year old son is taller than my almost five year old son (not the same I know but still a continual comparison). My standard response is, yep all kids are different, amazing isn't it!

Your a great mom! Keep up the good work. Your son is blessed to have a mom so commited to him!!

[schulie]

I will only echo what others have said. As a mom, I think you (and all of us moms) are more attuned to their child in terms of needs than their Dad...not to say that the dad does not love and support his child, just that at times he can not embrace that something is wrong/needs to be addressed/etc. Support groups are a Godsend; being able to talk with other parents in the same situation makes it so much bearable. My husband is much more accepting of our son's limitations after he sees him flounder in a "normal kid situation" (ie birthday party, playing at city playground, etc). I think in some ways we moms are wired to be accepting of our kids limits and are willing to search out alternatives/treatments/etc. Dads are wired differently and need more time to accomodate. As for the obnoxious acquaintance who had to compare her child with yours; I have found that agreeing with the person ("why, yes, your daughter Christy is so advanced for her age") seems to stop all the comparisons and allows your child to be left out of the mix. For people who do not know us or our situation, I do not care what they think, just want them to stay away from our son!! Blessings to you!

[DoreenG]

I didn't have time to read all your replies, but wanted to say a couple of things quickly (good thing I type fast!).

1. WTG Mama! You stick to your guns...although I would NOT (IMO) be opposed to more dx's. The more labels you have, the easier services are to get from the schools, and you have a lot of fighting yet in front of you, unless you live somewhere on the planet that really really really takes early ed for kids w/SN seriously. Even with 50 labels, you will fight tooth & nail for what your son needs, I'm sorry to say.

2. As a mom of a set of twins, 1 w/autism (non-speaking at 5) and the other developing typically, I cannot tell you how many acquaintances have commented, and how many people have bragged their children are past Darby's level.

The only thing I can say on this forum is blow them off. They are not worth your time or efforts. When I feel the need to say something to diffuse a sticky social situation (such as in a bowling alley, etc.) I just say "Darby has special needs and talking is very difficult for her" and walk away. If they (the people) show any kind of geniune interest in her, I will decide at that point if I wish to share more. As for the woman drawing blood, you can (if you want) stop her by saying "Yes, he has FAS-or whatever you can to share here- and we are so happy he came into our lives, and we are so proud of how hard he works". If they go on about how birth mothers shouldn't drink, etc., just say "it's not my place to judge others" and I bet they shut up fast.

3. DH not on board. It's taken 3+ years for my DH to really start understanding that autism (to my girl's level of severity) is life long. He's still in denial. He's participating more and more, and wow, when he does I feel like I hit the jackpot because he's really good at finding new info or working with her. All I can say is try to have patience, he will come around. It's not easy to realize our kids will have issues all their lives, and daddies are different then mommies...they still live in the world where little gremlins come out at night and pick up their clothes off the floor. Let him come to terms with it...he will, and just when you think you can't shoulder anymore, he'll prop you up.

You really are doing fantastic. I personally, did not skip the grieving stage when it came to my girl's dx, and that was a very stupid, selfish thing of me. I'm so proud to see others that pull themselves up and move forward, positively...I wish I'd done that sooner.

You go, girl.

[mikeintexas]

Hi Katrina -

I too just wanted to toss in my well wishes and say that you are doing a terrific job. It is so incredibly hard to get both parents on the same page. And even when they finally get on the same page, they occasionally are reading different paragraphs. Patience and communication is key here. Also, it is a process... it takes time for these things to come around (though I totally understand the frustration that accompanies waiting for the process to play out).

Know that you have an ear here... please PM anytime if you need anything or want to know what another male is thinking. We tend to think a lot alike.

Mike