support / encouragement: if your SN DC appears typical ..

[Momma Aimee]

Theo is 4.5 and looks totally typical.

however he is not.

SPD, ADD / ADHD?, speech issues, ....the list goes on with no real "fit it all" DX to be had.

Now that he is 4 and in 5T clothing so tallish -- we are running into trouble .. he simple can not behave like a 4/5 yo. He can't sit, he can't speak, he is just not that mature.

I have a 2.5 year old and the best thing i can say is i have twins.

But more and more in public (Church and so on) it is becomeing diffcult .. not just diffcutl like it always has been -- manageing him -- but diffcult as is how others react to him.

not 100% i have a question, but sighhhhhhhhhhhhh jsut wondering how others do it -- do you make a point to tell people about his SN, do you avoid stuff (I'd liek to but everyone says he needs to go out adn do stuff or he never will be able to) ...

thanks

[TzippityDoulah]

you know this has beena battle for me. I hae a 5 yr old that is SO easy one on one. she's delightful! But she has real serious struggles and delays that show up in regular daily life. AND she looks 1-2 yrs older than she is. everyone always expects her to act more mature, but as she is younger AND delayed she can't. So e get the "she looks fine to me, she just needs some discipline" kinda stuff from people. it drives me crazy and honestly it drives a wedge between me and other people. I feel I have ot either side with my daughter or with them and obviusly I'm not siding with them! and it's not like she's my only kid and i have no idea what I am doing. I have 3 and I've been a parent for 10 yrs!

all I can tell you is that I have to develop tougher skinabout the whole thing. and not take it personally. they don't understand and they assume wrong. big deal. I can set them stright and move on.
I'm working on not letting it bother me. I also don't think twice about telling people about it. sometimes I say she delayed, sometimes if need be I have even say she's on the spectrum (though her last eval was 4 yrs ago and she only presented with SPD at that point - but i believe she is dealing with more now). B/c I know people know what autism is (or think they do) but nobody knows what SPD is. People are usually more understanding at that point. If they get it, I explain SPD and the whole diagnosis thing but that rarely ends up happening b/c people aren't interested in actually KNOWING what's going on. Even so some people just like to know better than you. They just thrive on feelig good about their parenting by judging others.

my MIL told my SIL to tell my husband that the reason my son doesn't sleep is b/c I didn't feed him solids soon enough. (He has an inability to swallow and several other delays.... but someone if I forced solids down his throat that would make him better. should I even mention she left her kids in the middle of the night and never came back? yeah clearly she knows how to parent better than me! :eyeroll).

[Momma Aimee]

Originally Posted by HennyPenny

you know this has beena battle for me. I hae a 5 yr old that is SO easy one on one. she's delightful! But she has real serious struggles and delays that show up in regular daily life. AND she looks 1-2 yrs older than she is. everyone always expects her to act more mature, but as she is younger AND delayed she can't. So e get the "she looks fine to me, she just needs some discipline" kinda stuff from people. it drives me crazy and honestly it drives a wedge between me and other people. I feel I have ot either side with my daughter or with them and obviusly I'm not siding with them! and it's not like she's my only kid and i have no idea what I am doing. I have 3 and I've been a parent for 10 yrs!

all I can tell you is that I have to develop tougher skinabout the whole thing. and not take it personally. they don't understand and they assume wrong. big deal. I can set them stright and move on.
I'm working on not letting it bother me. I also don't think twice about telling people about it. sometimes I say she delayed, sometimes if need be I have even say she's on the spectrum (though her last eval was 4 yrs ago and she only presented with SPD at that point - but i believe she is dealing with more now). B/c I know people know what autism is (or think they do) but nobody knows what SPD is. People are usually more understanding at that point. If they get it, I explain SPD and the whole diagnosis thing but that rarely ends up happening b/c people aren't interested in actually KNOWING what's going on. Even so some people just like to know better than you. They just thrive on feelig good about their parenting by judging others.

my MIL told my SIL to tell my husband that the reason my son doesn't sleep is b/c I didn't feed him solids soon enough. (He has an inability to swallow and several other delays.... but someone if I forced solids down his throat that would make him better. should I even mention she left her kids in the middle of the night and never came back? yeah clearly she knows how to parent better than me! :eyeroll).

We actually LEFT a church because we were bing excluded, and when DH went to talk to the pastor about it -- he told DH "T needs more accountablity, he is not a baby" and =more --

[sbgrace]

Aimee, that's incredibly sad about the church. I hope you found a new one with more loving people?

I had it easier because my kiddo is actually very small for his age (5 to 7% height usually) so he looks younger rather than older. But it still has gotten harder as he ages. I have at times told people of Andrew's diagnosis when his behavior was incredibly inappropriate (I mean incredibly inappropriate, not meltdowns or weird/lack of response to conversational attempts sort of stuff). You could use something vague like "he's got some developmental issues that affect maturity" or similar. Sometimes (usually) I've been vague saying he's a bit delayed in some areas or has some special needs. Rarely I am specific. Often I just say nothing (especially when it's not somewhere that we consistently go/people we consistently see). You could print up a card if you don't want to say anything in front of him. If you're getting a lot of rude busybodies at random places I would print one that basically tells them to buzz off.

[~cassie~]

You can tell my son is SN, however my nephew you cannot. He is 7 and Bipolar and I know my sister has been blamed for a lot of his behavior. People, including myself, have told her she just needs to discipline him and stop letting him walk all over her. Which, she does do and she sucks at the discipline part of parenthood. However, the diagnosis really helped everyone see the big picture and that she isn't fully to blame for his behavior. She doesn't tell people the diagnosis, but rather will mention that it is out of his control and that he is learning to cope in better ways or she will say he has "some difficulties" and that usually helps.

[TzippityDoulah]

Originally Posted by Momma Aimee

We actually LEFT a church because we were bing excluded, and when DH went to talk to the pastor about it -- he told DH "T needs more accountablity, he is not a baby" and =more --

oh wow! did you explain it to them? (I'm sure you did) that's just pathetic and sad for a church to behave that way.

We lost some friends over unspoken problems. rarely does anyone say anything outloud. but we get excluded, or eyes rolled or other such nonsense.

some people just don't like to think there is life beyond their control. People like to think they are good parents. and if their kids behaves "well" that makes them good parents. if your kids dosn't act "well" then you're a bad parent. otherwise they'd have to admit it isn't always about how good a parent you are! I have too many people in my life this way sadly.

[Momma Aimee]

Originally Posted by HennyPenny

oh wow! did you explain it to them? (I'm sure you did) that's just pathetic and sad for a church to behave that way.

We lost some friends over unspoken problems. rarely does anyone say anything outloud. but we get excluded, or eyes rolled or other such nonsense.

some people just don't like to think there is life beyond their control. People like to think they are good parents. and if their kids behaves "well" that makes them good parents. if your kids dosn't act "well" then you're a bad parent. otherwise they'd have to admit it isn't always about how good a parent you are! I have too many people in my life this way sadly.

Yes, the pastor knew and so did many in the small church.

I have to note -- the exclusions that got us to leave was by the church itself (asking a boy 6 months younger to light candle -- with a parent -- but not asking Theo and so on ) as well as the other families. VERY small church when Theo was not invted to the b-day party EVERY other boy there was invitred to, well it was an apperant slam.

Sometimes i feel bad, like i must be a bad parent I KNOW i do my best ... but then we have such a hard time doing the simplest thing ...

[TzippityDoulah]

it sucks but some people aren't going to know how to handle your son. it may not be under the intent of meanness, but just simply they don't know what or how to go about related to your son. Not that you ran away - I just mean well... if you hings get hard sometimesyou need to sit people down and give them a chance to understand before just leaving.

That said, please don't think I'm judging you! we've left churches for this reason too.

[Momma Aimee]

Originally Posted by HennyPenny

it sucks but some people aren't going to know how to handle your son. it may not be under the intent of meanness, but just simply they don't know what or how to go about related to your son. Not that you ran away - I just mean well... if you hings get hard sometimesyou need to sit people down and give them a chance to understand before just leaving.

That said, please don't think I'm judging you! we've left churches for this reason too.

we did try. Everyone there knew what was going on -- the Pastor knew all the evals and everything, they all knew about the OT the ST and so on ...

and DH sat down to talk to pastor about our feelings -- formal DH took time off work to sit down by appt in his office -- and that is when the pastor told DH about accountablity and disciplen!!! Not to try to say i am BETTER at being a mom ... but our son wa the ONLY one who would say "yes Pastor" and "no momma" and so on and actually reply to every time he was spoken to (or try, speech is an issue) he holdds doors for people and so on ... great manners and great behviors ...not shown in all the other little boys ... but he is loud and can't sit and some times starts crying for 'no reason' and can't stop and so on ....

just worn down with it all ....

met the wife of one of DH's coworkers at the park, she 17 month old DD is timid by all standards, and that is fine, Theo's "best little girl buddy" is MASSIVLY slow to start and was afraid of him for months....i can not count how many times that mom said "wow what a boy" or "what how active" or something like that and what really upset me -- she stoood between her child and BOTH mine the whole time .... all my boys , either of them, wanted was to play. Theo is VERTY careful and has NEVER hurt another child -- he is jsut an very active, loud, little boy who runs and jumps and is silly ....yes he is immature and overly silly and so on -- but he wasn't gonna HURT her kid.

jsut worn out

[TzippityDoulah]

i totally understand. I'm so sorry. I hate that people can't admit they don't know somethng so they act like they know it all. it's not only unfair, it's cruel.

God will show you where is a good placw for your family. keep looking to Him, he loves your son even more than you do!

[TzippityDoulah]

p.s. have you looking into SN playgroup? we are planning on looking into one as soon as we get settled into out new home (we move this weekend!). I"ms o tired of being friendlessand having no friends for my kids. it breaks my heart. My kids are so good and sweet, but my 5 yr old is VERY silly and wild. she's actually very happy - but i think sometimes that's seen as bad! go figure. sometimes I don't even relate ot adults, how much harder it must be for kids!

[aslyn]

My DD looks typical but if you spend 5 min with her you know shes not a normal 9 yr old. we have had lotsa comments about "cutting the cord" and how "needy and dependant" she is, and how "weird" she is. We have cut friends and family out of our lives for treating her like poop. We don't explain anything unless they genuinely care, we feel that if our daughter is not good enough for them then they arent good enough for us. Those folks who truly care about our family are supportive and loving of all of us and those are the ones who really matter in life..the other ppl well who needs em anyhow

What amazes me the most is the people who try to diagnose her..my BIL had it stuck in his head that she's add/adhd and another aquaintance of ours said her problems were all because we homeschooled and she is dyslexic..My step MIL swore up and down she is autistic..none of these are the case but all of them swear they "see it in her" When we told them she has ID they all said "no way, shes not like *THOSE KIDS*" which I think bugged me more than actualy getting the dx. I guess its like when a parent of an autistic child says autism people think about the movie rainman..

Why cant ppl just accept our kids for who they are? Beautiful human beings with hopes/dreams just like the "normal" people..Just because they may or may not think inside the box doesn't mean they are worthless. Ok end rant!!!

[maybemom05]

This is a hard one. I've definitely found myself on the defensive about DS's behavior and sometimes I tell people about SPD and sometimes I don't.

I will say that one of the issues that really pushed me to go beyond our pediatrician (who is a good Dr, but not great at sensory or developmental issues) and have an evaluation done on DS was trying to manage at large family functions. This is family, so they are not going anywhere, and as DS got older, events became less and less pleasant - esp. around the holidays. DS was overstimulated and miserable, totally freaked out by strange food, loud cousins, and altered schedules. I knew I had to research other alternatives if my little guy was going to have any kind of positive relationship with his grandparents, cousins, and aunts and uncles. The extended family hasn't been great, honestly, even post diagnosis - but it helps to just be able to say, "The therapist says..." or "The doctor says...". For whatever reason, it helps to be able to refer to an outside authority. (I should point out that this is DH's family - my folks have been awesome all along!!!)

[Linda on the move]

Count me in. Depending on the situation, my DD can seem totally typical, like a special needs kids, the product of bad parenting, or just very, very weird.

My skin has gotten pretty thick, but I do find it isolating.

Originally Posted by HennyPenny

People like to think they are good parents. and if their kids behaves "well" that makes them good parents. if your kids dosn't act "well" then you're a bad parent. otherwise they'd have to admit it isn't always about how good a parent you are! I have too many people in my life this way sadly.

agreed. most people cannot make peace with how random life is. The fact that good parents can end up with a child who is different in painful ways is something they would rather not admit.

Originally Posted by aslyn

When we told them she has ID they all said "no way, shes not like *THOSE KIDS*" which I think bugged me more than actualy getting the dx.

I've gotten this too! From my MOTHER!

I think this one comes from an incrediably low view of people with special needs. They think we are insulting our children. They don't understand that a child can be both autisic or cognitively impared or whatever still be a wonderful human being, a child they love.

Back to the OP, what I tell people really depends on the situation. What I do really depends on what I think my Dd would enjoy.

[Momma Aimee]

Originally Posted by maybemom05

This is a hard one. I've definitely found myself on the defensive about DS's behavior and sometimes I tell people about SPD and sometimes I don't.

I will say that one of the issues that really pushed me to go beyond our pediatrician (who is a good Dr, but not great at sensory or developmental issues) and have an evaluation done on DS was trying to manage at large family functions. This is family, so they are not going anywhere, and as DS got older, events became less and less pleasant - esp. around the holidays. DS was overstimulated and miserable, totally freaked out by strange food, loud cousins, and altered schedules. I knew I had to research other alternatives if my little guy was going to have any kind of positive relationship with his grandparents, cousins, and aunts and uncles. The extended family hasn't been great, honestly, even post diagnosis - but it helps to just be able to say, "The therapist says..." or "The doctor says...". For whatever reason, it helps to be able to refer to an outside authority. (I should point out that this is DH's family - my folks have been awesome all along!!!)

I use the "our doctors says" or "his therpist says" some too







about the church -- i should note we choose a VERY small church thinking it would HELP. Theo would know everyone, everyone would know Theo and he'd function better and be accepted when he couldn't. stupid idea

[PNWmama]

Originally Posted by Momma Aimee

about the church -- i should note we choose a VERY small church thinking it would HELP. Theo would know everyone, everyone would know Theo and he'd function better and be accepted when he couldn't. stupid idea

Oh, I'm sorry That just sucks. I hope you can find a church home that accepts your son for the wonderful little guy he is

I have a 3.5 y.o. DS who is very tall for his age, about the size of a 5 year old. He's cute and has sweet curly hair which gets him a lot of attention from strangers out in public. He looks just like any other NT child, but he's not. Because of his height, people expect so much more out of him than a typical three year old can give, and really he isn't even able to give that much. It's really hard.

[NightOwlwithowlet]

This is my theory about why people want to blame the parents for "bad behavior' instead of admitting or acknowledging it could be special needs. If it is bad parenting, then it can't happen to them. To think that life it is somewhat random and sn to could happen to anyone, takes control away from them. It could happen to their kid too. I used to think like that too. Now, I realize we are all one car accident, TBI, or stroke away from being disabled.

Personally, I'm sick of people diagnosing my kid. Seriously, if after four or five evals and a lot head scratching by the experts, why do you think you can know based on an article you read? Last year my uncle's girlfriend decided my son was bipolar (a diagnosis that has never even been considered) because he jumping around outside pretending to sword fight with Darth Vader. She said something to DH. He said, "Oh, you went back to medical school when did you graduate?" Because we all know 7 year old boys never pretend to fight bad guys when they are outside and bored.

[TzippityDoulah]

Originally Posted by NightOwlwithowlet

This is my theory about why people want to blame the parents for "bad behavior' instead of admitting or acknowledging it could be special needs. If it is bad parenting, then it can't happen to them. To think that life it is somewhat random and sn to could happen to anyone, takes control away from them. It could happen to their kid too. I used to think like that too. Now, I realize we are all one car accident, TBI, or stroke away from being disabled.

YES! this is it exactly! you hit the nail on the head. if it's the parent's fault then it couldn't happen to me. It makes you feel shaken when you realize your entire life could change in an instant with the birth of a special needs kid.... and there goes your plans of how your life would be. what you would do. where you would go... and so forth. and people don't like that. It's just easier to say "it's there fault... their child might have a little problem but if they disciplined him more he'd behave just fine".

maybe this could be helped a little by SN parents like us flat out saying thing more often. "I'm sorry that the idea of a kid who can't be disciplined into being your ideal by your standards makes you uncomfortable, but he is OUR blessing and we choose to see the good in him. If you can't see it this way I am sorry for you." or something of the like.

I think another hard part about this is the lack of people to talk to. When you don't have understanding people in your life it's very difficult and lonely. I feel like I almost have to hide things about my daughter and her tantrums and difficulties so they don't think bad about her. I'm not sure there is a real good answer for this one. it's just a tough side effect hat I'm learning (slowly, b/c I'm stubborn) to except.

[Catubodua]

i am not a mom of a SN child, but i had an interaction with one just the other day and i thought i'd share my perspective. hope no one minds.

i was out walking the dog and i had the baby in his carriage and we walked past a girl walking with her mom. the girl was my size, appeared to be about 13 or 14 and looked "normal."

she wanted to greet my dog and her mom asked if it was ok. i said it was fine and put my dog in a sit to get some pets and lovin. i was focused on my dog b/c she gets very excited meeting new people and i was trying to make sure she didn't jump or wrap the leash around someone's leg.

the girl took the leash from me, rather gently, but i said, oh! (i was pretty surprised) and i went to take it back. she pulled her hand away and prevented me from getting it.

the mom immediately said it was inappropriate and she had to give it back. the girl sort of whined "no" and she and the mom got in to a small struggle over the leash (each were trying to get it away from the other). the mom looked at me and said, "she has some challenges" and i just nodded and didn't interfere with their interaction.

that short, quick statement helped me understand there was more going on and it also helped me frame my response when the mom got the leash back and gave it back to me.

so, while i can imagine it's not always something you want to say or get in to, as a stanger meeting a SN girl like that, it helped me alot - both being able to relax while the mom did her thing to get the leash back and being able to react differently when the girl wanted a hug goodbye.

btw - in case you were wondering, my dog was loving it - she saw it as attention for her and was sort of hoping around between the two of them.

[TzippityDoulah]

Catubodua -- thanks for sharing I'm glad it worked out well for you and fo them. it seems like you did exactly the right understanding thing. I often find the general public more understanding than friends and family. Funny how that works!

I think the phrase "she has some challanges" was a good way to put it. the hard part is you never know how someone will respond to a statemnt like that. But it seem you responded very well