How to tell others about your child's disability?

Rhea - posted on 08/28/2009 ( 25 moms have responded )

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I have a 13 month old boy that was diagnosed with a very rare chromosome disorder. He doesn't smile much nor can he walk or even crawl. I am wondering if anyone has any suggestions on how to respond to someone when they say "Oh, is he sleepy?" or "Is he walking yet?" I am still wrestling with the idea that I will have to take care of him the rest of my life and it often brings up harsh feelings when strangers make statements like that. I guess I just need some help on what to say. My mind goes to "He's mentally retarded" but I don't want to be mean, it is not like the person was trying to be mean. Please help.

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Christina - posted on 09/10/2009

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Hi, my thoughts are with you and yours.. I can only encourage you to bring awareness to your son's disorder. The more awareness the better you will be. It must difficult, but it will be easier if you are able to share your son's disability and challenges through educating others. It will empower you and your son! If you have pamphlets that can give a simple description on the disorder, I am sure you will get a positive response. My son has Tourettes Syndrome w/ Adhd, Auditory and Sensory Dysfunction and a few other disorders commonly on the spectrum. I find that the least "obvious" disabled children are often just thought of as difficult and no one get's that there are reasons for everything not is not quite right. I tell everyone I can about my son's TS and hope I am helping another child or adult that is misunderstood. Whatever you do, try not to take it personally when people inquire.. This is the chance to educate others who would otherwise react with ignorance. :)

Felicia - posted on 09/04/2009

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My daughter has several disorders and disabilities. First and for most I truly understand what you're feeling. When my daughter was exposed to bacterial meningitis at 2 months and was told she will be disabled with multiple disabilities. I was hurt, very upset, didn't know what to do, didn't know how to take care of my daughter, nothing. I felt it was my fault and I blamed myself. For years when I took my daughter out in public people would make comments, look at her like she's a disease, anything. My oldest daughter would get mad and say something. I have to remember these people DON'T KNOW. These people don't understand or don't know anything about special needs people, their condition or disability. Before our children, we were one of those people who didn't know. So, just expose your baby to the public. If people make comments just smile and walk away. That will keep your blood pressure down and you will keep your sanity. Just remember your baby needs you and when you're happy, their happy. I always felt God knows who to bless these special children with. They are truly a blessing. Things do get better. There are going to be some hard times, but it makes you stronger and then you can conquer ANYTHING, including questions from strangers and family. Email me for anything. Thanks.

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I have read most of these post and all are SSSOOO true. I have a son with CP, when I hear people ask why isn’t he walking or doing this or doing that? Then they would say "Well my child was doing this or that by this age". It gets me so upset. My child is not your child .Then I learned to just take it all in and tell people about my son. Either their curiosity interested them or scares them to stop bothering you. I come to realize that a lot of people don’t know of my son’s condition and me telling someone some part of why my son the way he is will put out there maybe a little bit more awareness. I agree with the mother before me and the other parent who said they hate to hear "I don't know how you do it!" Of course they don't just as much as we don't know how to live like they do! Next time someone ask you about your baby, you just simply just take a deep breath and tell them.

Robin - posted on 09/03/2009

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I have four children. My older two are non challenged and th younger two are. When they were little (by the way, none are more than 18 mos apart), One of the older ones would say, "He hasn't found his words yet, so we do all the talking" I found, for me, it was simpler to say what he/they have. Not only did that usually give the stranger all the info they wanted, but the more I would say it, the more I accepted those words without feeling assaulted by the terms. I agree with the other parent who said they hate to hear "I don't know how you do it!" Of course they don't just as much as we don't know how to live like they do! I actually told someone that I would be bored if I had her luxuries! (I was not in a good mood that day) Good luck!

Angie - posted on 09/03/2009

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I have an 18 yr old daughter that has Cereabal Palsey. What I always did was only tell if nessasary or if someone asks. Not because I was ashamed or embarassed but because I developed an attitude of "We are ALL different and unique and just because my child has a disability with a label why should I act as if thats a problem rather then a part of OUR normal life" I never felt sorry for myself or my daughter. I did grieve at first and was scared of the un known but I learned to deal. So now when people do ask "whats wrong with her" or "what does she have" I am grateful that they ask because to me its a couragouse careing question, instead of staring and looks of fear or awkwardness(which by the way I have learned to shrug off as ingnorance). My responce really is a non chalant aproach which varies depending on the age of the person asking. Of coarse a 5 yr old wont know what Cereabal Palsey is,most adults don't really understand it either. So to a 5 yr old I might answer " her muscles just don't work the same way yours do" and to a 15 yr old I will use the name Cereabal Palsey and add that it makes her muscles work different, and then for an adult I'll Tell them what she has and depending on my time or if they really seam genuinly interested I will go into variose details of what causes it and how it effects her........

Really your responce shouldn't be to cater to the people asking it should be about what you and/or your child is comfortable with and where you are at in dealing with your childs diagnosis.....and remember YOUR the one dealing with it and why cares what others think or say!

Laura - posted on 09/02/2009

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Hi there.



I too have a profoundly disabled child who is now ten. Like many have shared, my son has CP, seizures, global developmental delay, reactive airways disease and GERD. He is maintained on a feeding tube and we require nursing to get out for a date or to get away for a weekend (he is admitted to a respite facility for that!).



I too remember the early days when we still used a stroller and people would ask if he was sleepy or why he wasn't eating and so on. For the most part I would answer the questions honestly since I really want to increase people's comfort with children (and eventually adults) with very severe disabilities in the community (vs. hidden away!).



I will admit to snapping once. Matthew was having a really BAD day and was screaming and I couldn't get food into him and so on. He might have been a year old...so still babyish. Some woman came over to me and started offering advice on how to manage the situation and I just lost it and said something highly inappropriate like "perhaps if he hadn't had his oxygen supply cut off for 20 minutes at birth and sufferered catastophic brain damage I would be able to use your advice". I'm sure she was trying to help but I was SOOOOO at the end of my rope.



I have learned to ignore the offensive stuff these days and try to use any other opportunity to teach people about disabilities!



Good luck and welcome to what will be an exhausting, at times overwhelming and thoroughly life changing and joyous journey.

Theresa - posted on 09/02/2009

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My son has a rare chromosome to. I dont mind them asking me questions I feel that at least they want to learn more about him. I just say to them no he is a little different. I do get upset when they just stare and look at him. It seems every time we walk into a store I have everyone looking at us. sometimes I just ask them if I can help them then they look the other way.

Ann - posted on 09/02/2009

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I know what you mean when others think they are being right in asking personal questions. I have a 11 year & for the past years she was told she has a seizure disorder ( Epilepsy) & People look at her differently. I tell them that she has a right to be treated the same as normal children. Your situation is much more serious & I think you should just tell people that your Son has this condistion & He should be treated like everyone else. I too at first, Was a little angry & disappointed this happened to her ( I have 1 older Daughter & My Son who it skipped & got my little girl!!). But now, I had to learn not to be angry, embarassed & for safty purposes such as swimming, sleepovers, I had no choice but to say her condistion. I found that person who are embarrassed by her & to a point they don't want her with their children are not my friends!! I found confort in knowing some people with kids her age will treat her normal.

Stacie - posted on 09/01/2009

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To all the moms here I want you ladies to embrace your kids love them no matter what I truly hate the term special or normal those labels build resentment. to Rhea you do not have explian yourself to anyone you can educate but at the end of it all he is still your son love him don't explain him My son has ADHD he is 10 now but when he was younger he would make annoying noise out in public and people would stare ar us I felt very uncomforrtable at first but I had to teach him about self control it's not easy but I nlearned to take things onecbcbbb c c vvvcvcvcvcvvvnnbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbnnnbnsssssssssssssssssss

Karen - posted on 09/01/2009

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Alfie was born with a cleft lip and it was later discovered he has a brain defect which has caused other issues such as Infantil spasms,k diabetes insipidus and a developmental delay.



Before he was born we were prepared by the cleft nurses to deal with people's questions and the stares we would inevitably recieve. It took a few shopping trips to get my head completely around it, but if anyone looked or started a conversation I would always draw their attention to the positives - Alfie has amazing eyes!



As he has gotten older and his problems have developed further I have often been presented with the same sort of problems of feeling that I have to explain why he's dribbling so much, or why he's not talking, or why he's still mouthing everything he can get his hands on. However, I don't take anything personally - usually!!!! If I'm asked I usually just say Alfie's taking his own route to get where he's going as he has experienced some developmental delays. We're taking it a day at a time as we're not sure how he'll be as he gets older. If I don't feel like answering people's questions I usually just smile politely and walk away.



I work in a bank and obvioulsy get a lot of people coming in with new babies and children the same age and older than Alfie. The conversation inevitably gets round to children and what they're doing etc... I'm very proud of Alfie and the achievements he has made so far so never shy away from talking about him and explaining he has delays in his development. I have found that more people than I would have ever guessed have experienced problems with their own children. And they all seem to experience the same unknown territory of dealing with other people's questions!!!



I have established the boundaries of what I want to say to people on the street or in shops and tend to stick to the wonderful things that Alfie can do - not on what he is not able to do. I too hate the word retarded, and I'm not keen on disabled. I like the specially-abled description above and will probably use this!



Take care one and all. Good luck in dealing with peoples natural curiostiy! x

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My daughter is autistic and was very delayed meeting milestone. Our issue has always been that she is really beautiful and looks too normal so people expect her to act a certain way and she's very immature. I used to say "she has some extra challenges and it might take her longer than other kids" that usually was enough to make them wonder but most people wouldn't ask further they'd just walk away wondering. Occassionally someone whould say "oh what are her issues" or reference another child they knew with a disability. I've tried to take the opportunity to educate them. Some people are ignorant but some are just curious with big brass balls!



Good luck Rhea and remember God only gives special children to special Mom's. That's has always kept me going. You've gotta be that boys greatest champion!

Jennifer - posted on 08/31/2009

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I have one very beautiful daughter, I use to say with special needs, but in reading some of the comments here I think I'll say special abilities! She is now 9 and somedays going on 19! We have done many genetic tests, to come up with no answer... so we have the mystery girl... and just like all of you I went through many Questions and still continue to... because from the outside (with pants on because she wears braces) she looks like any other 9 yr old girl... but last year we were fitted for her first wheelchair, and it freaks others out to see her in a mall, get in her chair, and get out of her chair ?? We use it for long distance, we could not spend an afternoon at the mall with out this , but I refuse to make it so that she has to stay in it... why shouldn't she be able to get out and look at all the cool Hanah Montana things in the store etc. Developmentally Sam is 2-3yrs behind her peers and like said earlier sometimes 10yrs ahead!

I think my best advice when dealling with the questioners is to remember where it is coming from and deal with each one differently there is no perfect answer, and I know for a fact Sam is happier when people are asking her instead of looking, better to live in an educated world than not!! And we are our children's only advocate! Speak up for them!

Martha - posted on 08/31/2009

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Hi Rhea,

My son is 7 yrs and has developmental delay with no formal diagnosis. I remember when he was little and people would stop and have similar comments. I have always been very open about his special needs and would simply say that he has developmental delay. People usually would understand and often it would bring up conversations about friends or family they knew who had similar issues. In a couple of cases it led me to people who were very helpful with what I was going through and to other resources that I could access to help my son.

I know it is not always easy to admit your child has special needs. But I find being honest (without necessarily going into too much detail) has helped me come to terms with it.

Hope this helps,

Martha

Beth - posted on 08/31/2009

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I completely understand what you're feeling. When our first was born and we found out there were issues that may affect him for the rest of his life, we were overwhelmed. At first we didn't say anything to anyone. Later when he would have episodes in public we just did what we had to for him and ignored all of the rude people and their comments. I used to cry and get angry, asking these people if they always judge a book by it's cover. Later I stopped noticing and now my son is the same way. He no longer cares that he's special. That is the term that we use instead of retarded. He is unique and special and there are not enough of those people in the world. Strangers and friends can be cruel when they don't understand something or are scared of it, although you could sympathize with these people it's better to know that you were given a challenge with your son that only you can handle and grow through. good luck-keep smiling-enjoy the good days!

Chantel - posted on 08/30/2009

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Hi! My son also has a "disabilty". (I still hate that word to this day and he;s almost 10.) You don't have to go full blown and describe every detail to a complete stranger or acquaintance that asks about your child, especially when it's not something commonly heard about. You can always say he's disabled, or he was born the way God needed him to be (depending on the person asking of course). I do work with kids with disabilities and I wouldn't trade a single one of them for any "normal" child. Their smiles and giggles make my day a thousand fold! There's lots of agencies that can come into your home, just so you can run errands or go out to eat, for a break. I even have parents that stay there and just take a nap, or get their house cleaning done! I know it's hard to think about now, but he will be mobile someday! My lil' monkey has both a manual and a power wheelchair and he's got a gazillion (his word, not mine!) friends. Our special little ones make our lives seem harder to the ones on the "outside" of our lives, and, don't get me wrong, some days are hard. But, the little things, even the tiniest of things, will be the biggest day of your lives. Take one thing at a time, they are so worth it! I wish you and your family the best!

Danielle - posted on 08/30/2009

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Sabrina- I know how you feel about using the stroller at restaurants! The waiters and greeter always give us the weirdest looks- like we're just not allowing our daughter to sit at the table with us or something. And they always ask, "Do you want a booster seat or a high chair?" Um, yeah, we'd love one if it was a possibility for us!

Rhea- I just wanted to say that I think it's so great that you met the family of another person diagnosed with the same condition as your son. I know it was probably hard but at the same time, I hope you got some good support and some insight into what you may be dealing with. I also LOVE to hear that your other son is so loving! A child's love is just so pure! All my nieces and nephews are so good with London, but one nephew in particular is so tender and loving towards her it brings tears to my eyes! He's so aware of her and what she needs... once I was in the kitchen making lunch, my nephew was playing X-Box in the living room, and London was on the floor in the living room kicking her legs. She kicked so much that eventually she scooted across the floor and got one of her legs stuck under the couch- my nephew called out to me, "London alert!" and put his X-Box controller down to talk to her until I came in to get her leg out. It was so sweet! And they love to read to her and watch movies with her (we don't know how much she can actually see but they talk to her about what's happening and they sing along to the songs for her). I'm due with baby #2 in November and I'm so nervous! I'm worried about the lack of sleep and trying to please a newborn as well as a special-needs 2-year-old... But I just know that her little brother will be so good for her! I talk to her a lot and let her know that he's coming and that they can share toys and he will help with things that she won't be able to do. He kicks like crazy every time she's on my lap! I love it!

CESCELY - posted on 08/30/2009

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well, there will be questions and comments but you will get used to it and no how to handle it as time goes on, you don't owe anyone explanations. Only people that will be caring for your son need to know the details and for others just smile and say no or yes and leaave it at that, or you can say he has a health problem that will stop their questions but also you may find some people are compassionate and will have helpful info and resource contacts for you good luck and please find a support group!

Sabrina - posted on 08/30/2009

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First of all...my koodos to u for being honest and sensitive.

My basic idea is that you needent explain to anyone anything if it makes you uncomfortabe.

Simply answering "No" to is the sleepy, would be enough in my book.

Moving the conversatioon foreward.

Is he walking yet....i would say. no, or were getting there,

in time.

one or two word answers could be your ticket out.

Its private information and your sons personal business.

you can simply say...we have our challanges, but were working together, we all work hard.

In terms of your struggle with continuing care, you may want to set a special savings account to off set the expense of an aid in your later years.

Rhea - posted on 08/29/2009

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THANK YOU!!! Thank you all so very much for your responses. I wish there world was more excepting of special needs children. Oliver is a very happy little boy and he is very cute, so I may use that phrase ( Thanks Laura). I don't like to go into his disabilitiy with strangers or even say he has a chromosome disorder just in case some one say "oh which one?". He has a partial monosomy at 2q and a partial trisomy at 9q. Only one other person has been diagnosed with this in Washington state and she is now 21 and has many severe needs. My hope is that with changes in medical treatment and knowing early (she wasn't diagnosed until the age of 13. We have met her family) that we can help things develop a bit more in Oliver. He is receiving early intervention and that is definitely a life saver. They are so very helpful. He has physical therapy twice a week, wears orthopedics in his shoes just to be able to stand up while leaning on something and can't talk. He has just begun to be able to hold his head up but not straight. He is calm, quiet, and a snuggler. I guess I really need to just focus on the positives. On what he can do rather than what he can't. We have just begun to be able to use a grocery cart rather than me carrying him and my seven year old pushing the cart. He does have to have two bags on either side of him and he will get tired and flop to one side but I feel almost normal with him in a cart. His big brother loves him with all of his heart. I still cry each time when I think about his response to how his brother was going to be different. I asked him if this would change how he loved him. He said "Yes, it just means I will have to read to him more and teach him more." I wish all of the world could see life through a child's eyes and have such empathy. Thank you for the reminder that the questions will fade when he gets older. We have not yet ventured out to a restaurant with him yet. He hadn't been able to eat solid foods up until recently and it made things easier to just stay home.

I would like you to know that I am a special education teacher for children with learning disabilities. Since Oliver was diagnosed there has been a change in my peer teachers attitudes, for the better. I know it isn't much but I hope that their positive thinking will rub off on others and there will be a chain effect. It really angers me that teachers are not more understanding especially ones who teach children with special needs. I hope that when Oliver does get into the school setting he will have a teacher that will understand him, actually I will make sure of that. I am his best advocate and I won't let other treat him badly.

Once again thank you all for your kind responses each of you ahs helped me very much.

Rhea

Sabrina - posted on 08/29/2009

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I totally understand I have an 18 month old boy who can't sit up, hold a bottle, crawl or any of that, he is like a 3 month old in an 18 month body.I always get how old is he then the ooh after I tell them or man he is a huge baby but they think he is much younger than he is just really big for his age. Everywhere I go I get it many times a day even at the doctors office visits we have. I don't know how to address it but I do know how you feel. I just tell them his age when they ask and then look away I think most of the time after I answer they get embaressed so they won't say anything else because they then know there is something wrong with him. I keep telling myself that when he gets older the questions will stop people are just attracted to babies and want to ask questions and tell you who cute your baby is I know they don't mean harm but it dose make it hard for me to have to constantly remember that he is different. My husband tells it like it is he says he's 18 months and retarded but it just makes me sad so I can't be that blunt. I also get so many strange looks from people when we go out to eat because we bring him in a stroller and he looks old enough to be sitting in a high chair but he can't sit like that so they look at us like we are freaks I like the stroller better than the new wheel chair we got because it is so much smaller and doesn't take as much room. But I too am tired of the comments and stares but I guess it is human nature to wonder whats different about that person and want to know what it is. It just makes us stronger to be able to deal with it. Sabrina god bless all of our special children

Danielle - posted on 08/29/2009

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I get this a lot because my daughter's disorder has no physical attributes attached to it like some others do... she's not quite 2 so she's not in a wheelchair, on first glance she doesn't look disabled whatsoever. But she can't even hold her own head up. We either always have her in the stroller when we're out or sometimes we'll layer blankets in the bottom of a cart at the grocery store so she can stretch out. People always look at her because she's so dang cute! Then I can see the look in their eyes change ever so slightly when they ask how old she is and I tell them she's almost 2... Usually people just make a final comment about her being cute and walk away as fast as they can without looking like jerks but once in a while you get the people that will say things like, "oh she must be sleepy to just lay in the cart like that" or "oh she must be tired to sit so good in her stroller like that". I just say, "she's just such a good girl" and I smile and walk away. If the situation calls for more conversation, like standing in a long line with a curious stranger, I say that she's got some disabilities or that she's specially-abled. I'm not real fond of the word 'disabled' because I sometimes feel like I'm dooming her to a life of not walking and developing by using that word but I think people understand that without having to use harsher words like 'retarded'. I HATE the word 'retarded' because society now days uses that word to describe things/people that are dumb and OUR KIDS ARE NOT DUMB!! They can understand so much but they sometimes can't communicate back and that's ok!! If I'm in a situation that the stranger starts asking questions about her specific disability I'm GLAD to answer because I think part of the reason there's so many ignorant people is just that- THEY ARE IGNORANT! Educate them! Things won't change if nobody is willing to talk about the situation... If I can show someone that London is still beautiful and still HUMAN regardless of her capabilities, then why wouldn't I? I'm certainly not ashamed of her (not saying any of you great mommies are) so I'm more than willing to share her story with people. And if they don't like it- it's their loss because getting to know London and other kids with similar struggles is a blessing to THEM. Not the other way around.

Cheryl - posted on 08/29/2009

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Dear Rhea;
My son has autism, which is also distinctly misunderstood. He is a first grader and I have done much to inform people who work with him daily (teachers /staff) of his unique social take on the world. I can totally understand where youre coming from with feelings of getting used to the diagnosis yourself-my son was only diagnosed last year so it has been difficult because most(teachers/staff) already have an idea in their head that is bad instead of disabled so I have to constantly work at informing them. I always say my son has special needs-most will "get it" and let it go. I am getting better at calling it Autism though because I now feel like its my duty to inform the ignorant. I think you too will get thicker skin eventually and you will begin to feel as though there is nothing you cannot do when you face these challenges daily. I know what you mean about the harsh feelings and fears of losing your own life - other people can be very insensitive to parents of spec. needs kids not realizing what we go through> parents of spec.needs kids are often dealing with overwhelming emotions themselves. Good Luck to you and your precious angel...it will get easier as you will naturally move toward acceptance and find incredible strength you never knew you possessed. Cheryl

Melanie - posted on 08/29/2009

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Ladies,

I would first like to thank Rhea for asking the question and the other ladies for responding as I have a 10mth old with cp and mental retardation and it is so hard when people walk up to me and tell me oh she looks tired.I want to yell at these people and say she's not tired and a few other choice words !Then I remember my mother always told me if you can't say something nice do say anything at all!

Laura - posted on 08/28/2009

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I used to get really angry when strangers would come up to Mason and say crazy things.......Now NORMALLY if I catch someone starring at him I will normally just say to them.....isn't he just so cute!!! it normally will stop people in their tracks and they will generally think before they say anything else......it's my way of trying to be nice without saying back off ......the best is when you get unsolicited advice from strangers .......if I don't feel like explaining the situation I will normally just say thanks so much for your input...i'll keep it in mind........My favorite phrase is when people say I just don't know how you do it? Do we really have a choice ? :)

Heather - posted on 08/28/2009

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I too have a disabled child and I remember that in between stage when people weren't sure if he was "different" or not and would get a lot of comments. I would say some thing like "Nope, he is disabled" and leave it at that and go on my way. Are you receiving early intervention? If not talk to your pedi about it- that will help you a lot with your son reaching his fullest potential.



It's a really overwhelming at first to get the diagnosis and to realize the ramifications- it's a long process that involves a lot of grieving for the life you thought you were going to have and then coming to terms with the life you now lead. My son is 5 yrs old. He cannot walk or talk, cannot feed himself, has vision problems and seizures. We still haven't found a diagnosis, we know he has a small brain but we don't know what caused it and haven't found a syndrome that fits his symptoms. Our life is filled with dr's appts, therapy appts and coordinating it all, while trying to work and take care of our 15mth old daughter who is able bodied- it is very overwhelming at times, and other times is seems like we're managing to pull it all off....Hang in there and just go one moment at a time!

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