Hey, families with Special Needs members

[Gil]

What do you wish other people would realize about your situation? What are some books you think would be grateful if others read and applied when considering your families special need?

 

What is the best mentality for others not in your shoes to genuinely help you rather than hurt you during tough or awkward times? What are some of the things that other parents and people unknowingly do that is hurtful?

 

How can people without SN kids or SN situations be a supportive friend and keep an active relationship with you during the tough times?

 

While I know the "Dos" are going to vary widely and be case-specific, please can you think of any "Donts" that are general enough to be helpful to others?

 

 

If intervention were going to be helpful then what is a polite way to inquire?

 

Perhaps instead of averting my eyes and continuing on while a child is having a meltdown, would it be more or less helpful to you if I came over and asked "Is there any way that I can help?"

Is there typically anyway that a stranger can help?

 

[Ottakee]

Not much time here but want to follow this thread.

 

I have 3 with special needs and we do foster care for various levels of special needs.

[SKL]

My kids' special needs are mild, but I have a few wishes anyway.

 

I wish people knew how hard my oldest works without a complaint.

 

I wish people knew that adoption trauma is a real thing, not an excuse.

 

I wish people understood that making my kid feel rotten about herself only reduces her ability to shine.

 

I wish people knew my kid is smart, even if she can't remember the math she just did a minute ago.

[SKL]

 

Perhaps instead of averting my eyes and continuing on while a child is having a meltdown, would it be more or less helpful to you if I came over and asked "Is there any way that I can help?"

Is there typically anyway that a stranger can help?

 

You may not be able to help my kid, but it would help me to know you were thinking kind thoughts.

 

Know that the parent is probably doing all she can (often all anyone could) and try to focus on the positive or show compassion.  I've said things like "is there any way I can help" or "is she getting tired?"  Not so much because it is helpful per se but because I'd rather seem understanding than judgmental at such a time.

 

[unsinkable]

My kids' special needs are mild, but I have a few wishes anyway.

 

I wish people knew how hard my oldest works without a complaint.

 

I wish people knew that adoption trauma is a real thing, not an excuse.

 

I wish people understood that making my kid feel rotten about herself only reduces her ability to shine.

 

I wish people knew my kid is smart, even if she can't remember the math she just did a minute ago.

:grouphug: for you and your wonderful DD

[LostSurprise]

Hmmm...great question but one with lots of layers. 

 

 

I'd say that general compassion and suspension of judgement until you know more of the facts in any situation where kids are melting down or misbehaving. Lots of Special Needs kids don't come with helpful signs to tell you they are SN, so a stronger sense of compassion for all parents is helpful. It's easy to get caught up in judging the exhausted lady with the screaming toddler at the restaurant or bus, but if she's working on solving the problem, suspend judgement and try to pull up a feeling of compassion for her.  

 

Do normal courtesy stuff. Hold the door. Let someone else go first. Wait your turn without comment. Go around us carefully and politely. Be patient when the child is doing something (rather than the parent because that would be so much faster) because they need to practice things to get better at them. 

 

We've-all-been-there statements are helpful in the moment. "Good job, mom/dad." "Can I do X?" "Sometimes I feel like that." "I remember those days. Hang on." Are helpful. While "Can I help?" can be helpful, it often comes when you're up to your neck in dealing with stuff so it's more a distraction then anything else. A nice distraction but a distraction nonetheless. 

 

Smile at our kids and compliment the the good things. Make eye contact with all of the children, not just the SN one or the 'normal' ones. We need positive feedback too. 

 

If you talk to a child and they don't answer, be nice about it. Sometimes they can't. Sometimes they're just ornery because of physical or mental issues.

 

It's okay if your children ask questions. If they see something they don't understand and we have time we welcome innocent questions. In general, questions should be asked peer to peer. If you're an adult, ask me not my child (especially if they're young). They may not have words to explain things or may be intimidated or embarrassed. In general, be polite. Don't talk about "their problems" to me in front of them as if they aren't there. Be discreet or inclusive. 

 

If you know the person and you want to help, look for something specific to do. I love my friends, but 'what can I do?' is a totally overwhelming question. If I knew, I'd tell you! It's much easier to deal with specific requests. Sometimes the unharried person can see the need much clearer than we can. Sometimes we don't know how far you want to go. Offer to babysit or take us out for coffee or clean our bathroom, don't ask what you can do for us. 

 

If you know the person IRL, take on a little bit more work to keep the relationship connected. Isolation is really hard on SN parents, siblings, and kids. Don't be offended when we can't come over (sometimes we just can't), but keep inviting us! We'll invite you when things are going well! One of the most isolating feelings is that people don't invite us over anymore in case we can't come. Sometimes we can! Keep trying! 

[wendyroo]

I wish people would default to compassion instead of judgement...especially if they are just bystanders gawking at a spectacle that really has nothing to do with them.

 

If my five year old is having a complete meltdown at the library because he needs to play with all the trains and cannot understand why I am insisting he share with the other kids, because if he doesn't have them all then he can't make it be right, and all the other kids are doing what they want instead of what he wants...  Well, as an onlooker you could decide that he is a spoiled brat and that I am a bad parent, but, really, what does it hurt to assume that he has special needs and that we are both doing the best we can.  

 

Honestly, I will probably feel judged even if everyone surrounding me is actually feeling compassion, but feel compassion anyway just because it makes the world a nicer place.  Maybe if everyone starts to extend more grace to those around them, then some day moms of SN kiddos won't automatically feel judged.  And, whatever you do, please don't turn my kid's melt down into a character lesson for your child.  When I am trying to defuse an explosive reaction, the last thing I need to hear is a parent stage whispering to their kid about what poor choices my son is making and about how greedy he is being.  Try to feel compassion, try to teach compassion.

 

Wendy

[wapiti]

Gil, also note that there is a Special Needs forum within the Learning Challenges forum.

[Crimson Wife]

It's not bad parenting, it is a neurological difference and the type of discipline that works with my other kids simply doesn't with my SN child. I could spank her dozens of times per day every single day and it still wouldn't prevent the meltdowns.

[Catwoman]

This is an excellent thread, Gil. Thanks for starting it.

[Catwoman]

My kids are not sn, but we are familiar with meltdowns from our friends ASD children. Best thing we can do for them is give them space and quiet, watch their purse if we're at the park, and occupy the sibs/keep them safe.

 

For understanding, it's helpful if the bystanders know the difference between a tantrum and a meltdown. ime most assume everything is a tantrum. They don't understand that meltdowns can occur because of the overstimulation involved in a crowded place with funny lighting.

I don't think bystanders have any way of knowing the difference between a tantrum and a meltdown; at least I certainly don't.

 

I think the important thing is to assume the best of the parents and the child and try to put yourself in the shoes of that poor mom or dad, who is probably feeling completely helpless and embarrassed and mortified -- but who loves their child more than anything else in the world, and who will be very hurt by cruel or rude commentary, no matter what the reason for the meltdown.

 

I guess I'm basically saying, if you don't have anything nice or supportive to say, just walk away.

[Gentlemommy]

Yes, Gil, thank you. As a parent of three healthy kids, I have NO idea what life is like for those of my friends with a SN kiddo. I am totally compassionate, and I see how hard my friends work, day after day, year after year. Often putting themselves last in order to be a great parent to a SN kid. And to think that they would be judged for something that neither the parent, nor the child can help is so sad. I do struggle with not knowing what to say, or how to help...I know MY intent would be to honestly offer help or compassion, however I know parents of SN kids have so often been judged harshly and so they may have put up a wall and may take my inquiry or offer to help negatively...I have been learning so much about how to approach and offer assistance or a kind gesture from here. I appreciate all the parents that have contributed.

[Catwoman]

You may not be able to help my kid, but it would help me to know you were thinking kind thoughts.

 

Know that the parent is probably doing all she can (often all anyone could) and try to focus on the positive or show compassion. I've said things like "is there any way I can help" or "is she getting tired?" Not so much because it is helpful per se but because I'd rather seem understanding than judgmental at such a time.

 

:iagree:

 

And let's face it, that's helpful to any parent of a child who is having a meltdown. Any kid, special needs or not, can have a major meltdown at the worst possible time in the worst possible place, and it's hard for any parent to deal with. Why make things worse on people who are already upset?

[Truscifi]

Please be aware that getting irritated with my little one when he doesn't answer you is not helpful in getting him to talk more. He's 1) not as old as he looks and 2) got some speech delays.

 

But you know, even if he didn't have those complicating factors, being irritable still wouldn't help.

 

ETA - I don't think Babyman's speech delays really qualify him as SN and I don't want to diminish the struggles other parents face by comparison. I just get incredibly frustrated when people make an already challenging job more difficult by being unkind.

[LucyStoner]

Please refrain from diagnosing my child, telling me my child was misdiagnosed or lecturing me about any random thing you read on the interwebs and are convinced will "cure" my son.

 

If you tell me to hit my child, I will probably never speak to you again. Consider yourself lucky that I don't take your advice and use it on you.

[Alexigail]

Please don't talk about my child as if he isn't right there in front of you. 

 

Having a kid on the milder side is a double edged sword sometimes.  People either assume he's "neurotypical" and just ignoring their instructions to be defiant or that he is unintelligent and can't understand what's happening. They either assume I'm overreacting when it comes to safety concerns or they assume that his bruises are a result of my leaving him unsupervised. The point is that assumptions can be hurtful.  The best thing other parents can do if they're confused about things is just ask honestly.

 

ETA  Also, please don't ask me if I regret vaccinating my kids.  Ugh.

[prairiewindmomma]

----

[MrsMommy]

Please don't say "At least he doesn't have (insert terrible illness here)."

 

I think that because autism is so prevalent now, a lot of people think it's no big deal. It IS a big deal. It's something my son will have to deal with his entire life, something our entire family will have to deal with. Of course I'm grateful he doesn't have cancer or any other host of illnesses/problems, but that doesn't mean that our lives aren't, at times, very, very difficult and exhausting.

[LMV]

*I generally try to offer (and model to our children) compassion and kindness in the spirit that everyone is facing their own struggles.

*I also generally try to take a step back and allow others to parent their own children unless they ask for help or the situation has evolved into one where safety issues have arisen.

(I use the word generally because I'm not perfect and I'm sure there are times that I could have or should have extended more grace than I did in the moment.)

 

As a mom with children with their own challenges, I try to set our kids up for success. I also try to identify exit strategies ahead of time so that they can be used as smoothly as possible if the need arises.  In a related vein, we host a lot of the girls' social activities and events so that we are in position to be able to support, encourage, adapt, and or intervene if needed.  When DD14 was 11/12 she was dealing with a lot of PTSD stuff and our general approach to invitations extended was to turn them around and invite the friend to our house. We have a pool and a lot of cool things so usually her friends were quite happy to hang out at our house instead.  Interestingly one of her friends has a brother with special needs and after the second time our daughter flip-flopped the invitation the mom did ask me if I was uncomfortable letting our daughter go to their house because of her son.  We had gotten to know her well enough by that point that was I was comfortable being honest with her about why we making the decisions we were making.  

[unsinkable]

If my DD is having a seizure, ask me if I need help. I don't care if you walk right up to us. I'd rather have you do that than have to look around at all the people staring and try to decide whom to ask for help.

 

Things I might need:

 

To know what time it is, so I can tell how long the seizure will last.

 

To help me gently lower my DD to the ground, if she isn't already there.

 

To move objects that could hurt if she hits them during the seizure.

 

To get a a paper towel or cloth to help clean up if she drools or gets sick.

 

To tell me it's OK. My love language is words of affirmation. :-)

 

To help her and I to the car if we need it when it is over.

[LMV]

If my DD is having a seizure, ask me if I need help. I don't care if you walk right up to us. I'd rather have you do that than have to look around at all the people staring and try to decide whom to ask for help.

 

Things I might need:

 

To know what time it is, so I can tell how long the seizure will last.

 

To help me gently lower my DD to the ground, if she isn't already there.

 

To move objects that could hurt if she hits them during the seizure.

 

To get a a paper towel or cloth to help clean up if she drools or gets sick.

 

To tell me it's OK. My love language is words of affirmation. :-)

 

To help her and I to the car if we need it when it is over.

 

Yeah, this would probably fall into my category of potential compromise of safety.  So I would ask you if you wanted help or wanted me to activate EMS.  I'm generally an instinctive clearing the scene to prevent further injury type so I would probably be inclined to move the potted plant out of her way even if you didn't specifically want help.

[maize]

If a child is melting down in a public place, I might catch the parent's eye with a sympathetic smile and say something like "looks like it's been a long day."

 

The situations I struggle with are the ones where the child is in an obvious meltdown and the parent is harsh and angry. If I get a chance I might say something like "he sounds pretty tired" hoping the parent might recognize that the child isn't just being willfully naughty.

[Loowit]

Don't minimize what my child is going through.  Don't think that my child with sensory issues is just doing it for attention or that if I just made him do it (whatever he is avoiding) then he would learn to get over it.

 

Don't try to talk to my son when he is raging and trying to get away from the situation.  He knows that he needs to leave or he will end up hurting someone.  Give him space to cool down and collect himself and his emotions.  And please don't blame his behaviors on my parenting.  I have done enough blaming myself, from others I need support or if they can't do that, for them to just keep their mouths shut.  He has a psychological condition that would not be helped by "a good spanking".

[Rosie_0801]

Autistic kids may not have empathy but that doesn't mean their own feelings don't get hurt.

 

My children do not need electronics, thank you. Even if there is funding for them. No, I really don't care how much they would like them. I don't care how much benefit other people's children get from them. Please do not give my children electronics because it turns them into one dimensional card board cut outs of children and that is counter productive when I'm trying to raise people.

[sbgrace]

When people notice and say positive things about my son it makes me feel good. This could certainly go over-board, and needs to be genuine. But it's a real boost for me when it happens.

 

Smile warmly at the parent if you catch an eye when something bad is happening.

 

When you see something like a 10 year old throwing what looks a lot like a toddler temper tantrum...try not not assume this is the result of poor parenting. A big portion of kids acting something other than their age have less obvious special needs. Give people the benefit of the doubt. Give everyone grace.

 

You probably can't help a child in the middle of a melt down. You might be able to help distract other kids,  supervise a sibling (if you're known/trusted), explain things to your own kids in a way the promotes understanding, or similar.

 

If your own kids interact with a special needs kid, talk about the differences they notice as another way of being or as we all struggle with certain things and x is hard for him/her. Talk what kindness toward that specific child might look like.

 

Avoid giving parenting advice (typical parenting often just doesn't work with special needs kids) or suggesting treatments.

 

Don't ask questions fishing for a cause for the child's issues.

 

If you're in an organization, ask the parent to tell you what your organization can do to help their specific child participate safely.

[unsinkable]

Yeah, this would probably fall into my category of potential compromise of safety. So I would ask you if you wanted help or wanted me to activate EMS. I'm generally an instinctive clearing the scene to prevent further injury type so I would probably be inclined to move the potted plant out of her way even if you didn't specifically want help.

Thank you. It is always so nice to have people around who will help.

 

When DD did her talks for her Girl Scout Gold Project, she included a little about what to do if someone is having a seizure and many people came up to her afterwards and told her that was very helpful. Many people simply don't know what to do or are too shocked to do anything.

 

Witnessing a big seizure is a jarring experience, even for those of us who deal with them regularly. I'm sure it is particularly shocking if you've never seen one.

[Kathryn]

For me, the single thing that would do the most good is a sympathetic smile or an offer to help instead of the glares of death when dealing with a public meltdown. And on the subject of offering help, speak to ME, not my DS. I've had people try to offer DS a cookie or reason with him while he's in meltdown mode instead of asking me what they could do. NOT helpful! Also, unless I ask for advice, I don't want to hear about your miracle cures. Just don't.

 

ETA: Even if I don't accept your offer of help, I promise it would still make my day.

[Tap]

One of my biggest pet peeves, is when people offer my kids things without asking me discretely first. With my NT kids, they may be disappointed that I say no to a couple of cookies from a store clerk trying to be sweet.  They would let it go and be over it.  

 

With my SN daughter (whose disability is not physically apparent), I will deal with a huge tantrum. If not at that moment but sometime in the next two days, over that couple of cookies.  She will hold onto things for days, and then when something totally unrelated flares her attitude, Every.Little.Injustice in life gets brought into it and blow out of proportion. She has kicked holes in her bedroom walls over similar situations. When people offer her treats. It is just as if they forced me to give them to her (to avoid the meltdown later) or I will pay the price, Often multiple times before those 2 cookies will leave her memory. 

 

She is 105lbs, 4'8" 7year old.  Trust me. She doesn't need those cookies and hour before dinner.

 

For other kids it may be allergies or intolerance.

 

 

 

For me, if my daughter is having a tantrum......I want them to just walk on by.  Treat me like we are invisible and do not engage her. 

 

 

 

 

[Princess Ariel]

If you haven't done it earlier, teach and model compassion to your young teens. Life as a young teen girl on the spectrum can get pretty lonely when no one wants to be around you or be your friend because you are different. A smile, a hello, can make all the difference in the world. My daughter still has feelings and it would make her day if you said a kind word to her.

Thank you!

[wendyroo]

The correct way to refer to children with normal intellectual function is "neurotypical". So you would say that you are the parent of three neurotypical children. I know it might seem like splitting hairs, but to parents of children with neurological differences, it makes a difference. The former implies illness or disease; the latter implies neurological differences.

 

Just curious, what do you use as the opposite of neurotypical?

Do you just use non-neurotypical?

Obviously I could say Peter is special needs, but that covers a lot of territory and doesn't really specify that his brain works differently than most kids.

 

Thanks,

Wendy

[Gentlemommy]

I don't mean this to pick on you, but just as a way to educate anyone reading this thread while using your words as an example.

 

Children with special needs can also be healthy. Just because there are neurological differences doesn't necessarily mean the child isn't healthy. My son is intellectually disabled, but he's as healthy as a horse.

 

The correct way to refer to children with normal intellectual function is "neurotypical". So you would say that you are the parent of three neurotypical children. I know it might seem like splitting hairs, but to parents of children with neurological differences, it makes a difference. The former implies illness or disease; the latter implies neurological differences.

I appreciate that, that's exactly what I meant to say...and what I needed to know about how to phrase things better. Thank you for saying it gently.

[LucyStoner]

Yeah, my son with autism is as healthy as a horse so to speak. I can count the number of times he's been to a doctor for anything besides autism and well checks on a single hand. If we could bottle his immune system, we'd be rich. That said the autism related appointments are rather a lot. It's like a PT job but we want to do what we can to help him.

[TechWife]

I wish other people would realize that not every disability is visible.

 

I wish people wouldn't disagree with a diagnosis. When you say  "that can't be right" means that you think I haven't consulted reputable physicians and other professionals to help us and that you think you know more about the situation than I do. 

 

I wish other people realized that a diagnosis doesn't go away simply because the child graduates from high school, college, turns 18 or 21 or whatever milestone you might be considering.

 

I wish people would realize that every person with autism isn't like Temple Grandin.

 

 

 

[LucyStoner]

I wish people would realize that every person with autism isn't like Temple Grandin.

Totally. Or worse, Sheldon Cooper. I have had it up to here with people thinking they know all about autism because of some fictional character on a sitcom. Media representations of people with autism are usually pretty bad.

 

Also, genius does not equal HFA or vice versa. It's very tiring for people to assume that my son has a high IQ because he's autistic. No, he has a high IQ because he comes from a family with some pretty smart cookies. People with autism can be of low, average or high intelligence.

[kbutton]

That we are still learning too...I have a late-diagnosed kiddo, and I am sure I sometimes step on other people's sensitivities without knowing that's what I'm doing. There are so many kinds of special needs, and there are many that are totally unfamiliar to me.

 

I think being approachable and friendly is always helpful. If my kid is melting down, I do want to disappear into the floor (though I may very well appreciate some kind of help as well). If he's just doing something unusual or not typical of someone his age, I don't want to be ignored; I just want people to be friendly and realize we're all different. 

 

Along the lines of offering cookies, etc. to kids that the parents have to say no to...respect all boundaries that parents set, and try to be sure you aren't setting up expectations that you don't want to deal with yourself. For instance, if a parent specifically says something like, "are you sure you want to give him blanket permission to do x because he's likely to take this farther than you mean for him to?" please take it seriously. I try to warn people that my son has trouble with boundaries, but they just don't get it. And quite frankly, if you've been warned, I don't have the energy to police my child's behavior over that blanket permission YOU granted. We have a relative that wouldn't believe us that my son should not be allowed permission to get into her car trunk whenever he pleases, play with the doors, the lights, etc. It's caused a problem for us (for several years now!) in that he thinks he can do it with other people's vehicles too. We do enforce boundaries with other people's vehicles, but we let this relative know that when he does something that she doesn't like in this regard, she's stuck (she's close enough and disrespectful enough of our rules that she deserves the backlash, trust me). As long as he's not damaging something, she needs to suck it up and tell him that he no longer has permission to get into her vehicles. (She routinely undermines our authority.)

Realize that some of these kids are like Pandora's box. It's easier for them to keep a lid on undesirable behavior than it is for them to be allowed to break a rule "just once" and then go back to obeying it. We may set rules for our kids that seem pointless or strange, and we don't want to have to defend those rules to everyone.

[wapiti]

Totally. Or worse, Sheldon Cooper. I have had it up to here with people thinking they know all about autism because of some fictional character on a sitcom. Media representations of people with autism are usually pretty bad.

 

This is off-topic, but tonight my dd has a writing assignment (8th gr) based on the summer reading of The Curious Incident of the Dog in Night Time, with an autistic main character - I'd be interested to hear any reviews of this book.  I didn't read the book, but the writing assignment is interesting, describing the sensory overload that might take place for the main character in a busy place.  I showed dd a few of the Carly Fleishmann videos and they made quite an impression even though I'd guess that her experience is naturally not exactly the same as that of the fictional character that dd is writing about.

[LMV]

Thank you. It is always so nice to have people around who will help.

 

When DD did her talks for her Girl Scout Gold Project, she included a little about what to do if someone is having a seizure and many people came up to her afterwards and told her that was very helpful. Many people simply don't know what to do or are too shocked to do anything.

 

Witnessing a big seizure is a jarring experience, even for those of us who deal with them regularly. I'm sure it is particularly shocking if you've never seen one.

 

Before our daughter had her first seizure I had dealt with seizures in many contexts (including status epilepticus) in the ED as a physician.  None of that prepared me for what it was like when it was my child.  I hope that I'm a little more empathetic to moms (and dads) of other children now.  I will also say that it was very traumatic to our ten year old who (nine years old at the time) witnessed the beginning and screamed for my husband from the playroom. 

 

Education is always good and I think this is an area where there is still a lot of layperson misinformation about what is and is not helpful to do during a seizure.

[LucyStoner]

This is off-topic, but tonight my dd has a writing assignment (8th gr) based on the summer reading of The Curious Incident of the Dog in Night Time, with an autistic main character - I'd be interested to hear any reviews of this book.

I am not familiar with that book. I may check it out. Thanks.

[Paige]

My kids' needs are varied and not so obvious. They are mostly physical needs that are easily hidden and forgotten. My one wish is that people would please not forget what I've told them. Please just remember. Please don't make me tell you again and again that my child cannot do something as easily as other children or may not understand as easily. It is frustrating and makes my children uncomfortable. They'd really like to forget they have disabilities too but they can't and it stings when people who should know better act clueless. One of my DDs has cerebral palsy and another child has hearing loss and wears hearing aids. I'm not even talking about disabilities that are controversial or rather new to people, although we do have some other issues in the mix. 

 

No. My kid can't hear you. He's not being rude, he's not stupid, he's not being disrespectful. Please remember. 

 

No, we can't take DD hiking for hours at some super fun place. We aren't lazy people who don't like to play outside. Do I have to spell it out for you again? Please think before you speak and remember. Sigh....that's really the biggest frustration I have. 

 

My DD actually could go hiking these days because she's doing so well, but in the past it would have been impossible. I can't remember how many times she was invited to places she'd really have liked to go but the situation was really not workable at the time. I guess some people may think it would be worse to not be invited, but in my experience, the worst part for her was when we had to say no and the person, who should know better, would ask why. I could just see her crumple when I'd remind the friend/family member that DD's legs could not do it. She was mild enough that we had no wheelchair, so once she was too big for strollers or to be carried we were limited. 

[unsinkable]

Before our daughter had her first seizure I had dealt with seizures in many contexts (including status epilepticus) in the ED as a physician. None of that prepared me for what it was like when it was my child. I hope that I'm a little more empathetic to moms (and dads) of other children now. I will also say that it was very traumatic to our ten year old who (nine years old at the time) witnessed the beginning and screamed for my husband from the playroom.

 

Education is always good and I think this is an area where there is still a lot of layperson misinformation about what is and is not helpful to do during a seizure.

Oh, yes, LMV! I remember you sharing that story! How is your DD now? I hope she's stable. :grouphug:

 

My DD has been in status; that is why I said I'd like to know the time when she starts seizing. I've asked for the time and had someone say, *oh, don't worry about THAT, now!*

 

It's funny, in a dark way. Yeah, I'm just wondering what time it is. I need to get to a movie. :lol:

[Rosie_0801]

I don't know about anyone else, but if I've told you I don't need help and you don't believe me, don't say "are you sure?" That will not unjam my communication circuits. :p Say "I could carry those shopping bags for you." If I say no after that, either I mean it or I'm being silly, neither of which you can solve for me. :)

[LMV]

Oh, yes, LMV! I remember you sharing that story! How is your DD now? I hope she's stable. :grouphug:

 

My DD has been in status; that is why I said I'd like to know the time when she starts seizing. I've asked for the time and had someone say, *oh, don't worry about THAT, now!*

 

It's funny, in a dark way. Yeah, I'm just wondering what time it is. I need to get to a movie. :lol:

 

Thankfully she is doing a lot better now.  She is still taking Keppra but it is working so, at least for now, we're just living with the growth issues that (at least for her---I know other children have had different experiences) seem to associated with the medicine.  The diagnosis has also added an additional layer of paperwork to the adoption process so we haven't been able to finalize over the summer as we had hoped but we're optimistic that will happen before the end of 2014.

[unsinkable]

Thankfully she is doing a lot better now. She is still taking Keppra but it is working so, at least for now, we're just living with the growth issues that (at least for her---I know other children have had different experiences) seem to associated with the medicine. The diagnosis has also added an additional layer of paperwork to the adoption process so we haven't been able to finalize over the summer as we had hoped but we're optimistic that will happen before the end of 2014.

I'll add my prayers and good thoughts for you all and that everything goes smoothly with your adoption!

 

:grouphug:

[albeto.]

This is off-topic, but tonight my dd has a writing assignment (8th gr) based on the summer reading of The Curious Incident of the Dog in Night Time, with an autistic main character - I'd be interested to hear any reviews of this book.  I didn't read the book, but the writing assignment is interesting, describing the sensory overload that might take place for the main character in a busy place.  I showed dd a few of the Carly Fleishmann videos and they made quite an impression even though I'd guess that her experience is naturally not exactly the same as that of the fictional character that dd is writing about.

 

Interesting approach. Of all the things about that book to write about, the sensory load would be way down on my list. I'd focus on the social aspects like the main character's (darn, forgot his name by now) response to various events surrounding his parents, the conversations with his school counselor, his problem solving skills on the train, and of course most importantly, the logic and emotions surrounding the incident of the dead dog at midnight. I'm sure there's more, but it's been years since I've read it and I tried to forget as much as I could.

 

It was a fantastic book and I would highly recommend it for anyone with a family member on the autistic spectrum with the exception of the parents. Good for grandparents, aunts, uncles (not cousins - let them develop their own opinions based on personal interactions), tutors. Not teachers - too intimate. Not parents. Too hard. Omg, too hard. Well, for me and dh it was. I simultaneously think it was one of the most important books I could have read, and wish I never read it. 

[wapiti]

It was a fantastic book and I would highly recommend it for anyone with a family member on the autistic spectrum with the exception of the parents. 

 

Thanks, albeto.  I appreciate your comments.

[albeto.]

To add to the list of things to not do (from the perspective of a parent with one of those "invisible" issues - autism):

 

• Do not tell the parent one day they will laugh at this. You have no idea how much that can sting.
• Do not tell the parent some pseudo-science Great Thing you heard about. Anecdotal stories can be misleading, can offer false hope, and can waste time better used finding out actual information.
• Do not talk to the parent through the child ("When I was your age, our mothers made us all lay down for nap time after lunch, whether we were tired or not.") It doesn't matter how big or sincere your smile is. You cannot know the nuances that we do, the details required to make things work, and what worked for you as a NT kid three decades ago may be completely irrelevant today. Besides, the parent has no doubt heard about it (and tried it) already.
• Do not stare, glare, or mumble about what you think ought to be done. The comment has been made before, but bears repeating - autism is not a consequence of lack of discipline.

 

• Do smile at the parent, nod your head, or in some way show approval and support if you make eye contact. Some of us want nothing more than to watch a giant Siberian sized hole open up in the floor beneath us and swallow us whole. Barring that, we'd like to pretend everyone isn't starting at us. If we do catch your eye, a friendly face, or friendly motion, can make or break a hard day.
• Do be friendly to the other siblings when one is raging in public. That rage can take all the parent's attention, and as much as we hate it, our other children have learned to grow up in the shadow of the child who commands our attention. I'll never forget the nice guy on the airplane who played "What animal am I" with my young preschoolers while we were waiting for a delayed takeoff, in our seats, for some 90 min while one child screamed his demands (not any blanket - his blanket, not any pillow - his pillow, not any lamp - his lamp, as he recalled every item in his bedroom he wanted right then and there). While I tried to keep him quiet and calm, my other kids actually enjoyed themselves. That man was a lifesaver to me. 
• Do take our kids seriously. They don't need to be patronized. They know they have challenges. Life is frustrating enough being a kid and being confused, led around, told what to do, but it's so much harder when you don't get the tiny details  about living in society that everyone else takes for grated is common knowledge. But they know something others don't. Let them shine by being the expert for you. 
• Do stick up for someone when others yell. "Shut that damn kid up!" makes everyone tense, most especially the parent of said kid (who would like nothing more than to not have a child drawing all this negative attention). Having a stranger point out politely that kids make noises and the parent is taking care of it just fine will go a long way. We'll remember that act of kindness for the rest of our lives. Deflecting the attention to you is like being a knight in freaking shining armor. 

 

Thanks for this thread, Gil. I've learned a lot from it as well.

[OneStepAtATime]

Hugs to all.  And thanks for the thread, Gil.  I don't think I can add anything that hasn't already been said.  Wish we could make this thread required reading...

[Violet Crown]

I had a long post and then deleted it because it was getting too personal. In summary:

 

Listen to what the parent says about the child's needs, not making assumptions based on other SN kids you've met or what you've read. Believe the parent when they say X is not a problem, but Y is a problem.

 

Don't take it personally when a parent of a child having a meltdown or panic attack or other crisis is short with you (especially if you've inadvertently triggered the crisis), as we're mostly focused on dealing with the situation.

 

Asking if you can help, or how you can accommodate, or if there's anything specific it would be useful to know, are all good things. As long as you listen to the answer.

 

ETA: Just because this comes up so frustratingly often: not all neurological/ psychiatric issues are autism spectrum disorder. So all the things you've learned about ASD kids are going to do you no good in dealing with my child.

 

And, thanks for starting this thread. :)

[Arcadia]

The situations I struggle with are the ones where the child is in an obvious meltdown and the parent is harsh and angry. If I get a chance I might say something like "he sounds pretty tired" hoping the parent might recognize that the child isn't just being willfully naughty.

My intense older sometimes need to be isolated and sometimes need to have someone stare him down to snap out of his meltdown.

 

His/Her parents/caregiver might be a lot more tired than him/her.

 

If the child is your friend's child maybe you can offer to keep an eye on the child during meltdown so that your friend could down a can of coke/coffee/beer.

[SKL]

I agree about the cookie thing (and any kind of food or other goodie that the parent declines).  Just because it doesn't cause any problem for your kid doesn't mean it's OK for my kid.

 

And if you did give my kid something I said she shouldn't have, don't blame me when she goes off her gourd.  Deal with it and maybe next time you will respect my wishes.