Need advice...How would you explain this to DS?

[Hasil72]

OK.. Please no flames or debate over if this was right or wrong, I'm just seeking input on how I might be able to console DS when this happens again. Here's how my weekend started...

DS is almost 9, on the spectrum with the related/inclusive symptoms of ADHD, sensory issues, and anxiety. He just finished second grade in a mainstreamed classroom with a PT aide. He has very few friends, if any, but is generally included in classmates birthday parties during the school year. Anyway, Friday afternoon he is down at a neighbors playing with the 2 boys, 1 is his age (not very tolerant) and the other is 11 (more tolerant) when he discovers that the younger of the 2 is having a birthday party that night and DS is not invited. The boys then start talking about all the activities planned for the evening so of course, DS asks if he can come. DS comes home with birthday boy and asks if we got an invitation. I tell him no. I ask DS to get something for me out of the kitchen while I ask birthday boy the real story. He says he didn't want to invite DS. I say OK and send him home so I can deal with DS. Needless to say it took almost 2 hours of trying to console a sobbing DS before he could calm down. He was so consumed by the idea of missing the games, cake and goodie bags that he was a mess. He even said that the boy is mean and nasty to him. So I asked why would he want to go where they would be mean? Back to the pinata, etc. He kept crying that he has no friends and they all think he is annoying. By now DH is furious because these 2 boys are at our house regularly to play video games, swim, etc. I see the mom outside and she says it's ok for DS to come down but b-day boy doesn't want him to stay for the sleepover. I told her that I handled it and that he told me he didn't want DS to go at all.

Finally, birthday boy's dad makes him come down to invite DS. I let him go for the water war and then brought him home. You would think I gave him his weight in gold. He kept thanking me and telling me it was the best party ever. It never ceases to amaze me how resilient he is.

So my question is this...how would you deal with the situation if, or more likely when, it happens again? How do you console the child? I know it is inevitable but it still breaks my heart.

Thanks in advance.

 

[belle&beast]

First hugs to you and your family. I hope some of these idease can be used in your situation.

I am an SLP and when I worked in the elementary schools, we always taught the typical peers about a child's disability. The parents came in with either the child (if he/she was capable) or a video tape and described the disablity and the actions that occur. Once the typically developing kids understood the reason for the behaviors, the child with the disability was much more accepted in the classroom.

We also have an autism center in our community and the professionals now have a program they use in schools. They have incorporated social stories for the classmates to help them understand the peer with autism. Each child is different, so they make the stories unique for each child. It is a great program and I wish more communities could have access to it.

My cousin and his wife have an 11 yo son with autism- he is very high functioning and his feelings are hurt frequently. He has learned to explain himself. If someone gives him "the look" or laughs at him, he will simply say, "I have autism and it makes me flap my hands when I am excited." Usually kids respond well to this and they learn his quirks. He now has a few close friends and he is playing on a football league and he is a great player!

I guess education is my advice to you. I don't know how feasible it is in the neighborhood, but I have found in my 10 years in schools and working with children, once they understand the situation,they are much more accepting of diffrences.

 

[bookwormde]

Same age as my DS Aspergers who is also very sensitive. He is not as “social seeking” as your son. A lot depends on how you have explained his difference from typical people. We were very up front about both the challenges and the gifts that go along with being on the spectrum. When things like this happen we remind him that some people enjoy and revel in the differences between people and some are afraid, indifferent or just do not understand the value of diversity. We let him know that there are people out there who will enjoy him just the way he is and that it just take a level of maturity for children to appreciate his gifts and this only comes with time and wisdom.

bookwormde

 

[swimlib]

I wish I could help you know how to deal with it, but I will say that this is a normal thing that ALL kids experience. Typical kids will not invite each other to parties or events for sily things, like he didn't share his pudding with me. I guess trying to just help your son feel special in those moments. Does he have a special toy or activity he doesn't get to play with often? maybe choose a special activity and use that to divert the attention if there is a chance.

I remember that feeling when I was younger. there isn't anything that you can really do but making him feel special may help to ease the pain.

 

[BeckyScott]

I was going to suggest much the same thing.

Because it does happen with typical kids too. For some silly reason there wasn't an invite, or maybe the parent said they could only invite a certain amount of kids and yours doesn't make the cut, or (this is always fun) your kid did get invited but you don't trust the parents.

Try to put yourself into the situation, pull out of "disabled mom" mode and into "regular mom" mode, and figure out what you'd do then. It isn't the same situation. But you'd have to deal with this eventually even if he was typical, so try putting yourself in those shoes for a minute and think about how you'd handle it then.

I think many parents, in that situation, plan something special for the child to compensate. For example, parents know that the stuff in pinatas and goodie bags is always total junk, and after a certain age the kids realize that too, it's just the idea of it that's so neat, maybe getting the child a toy they've wanted (within reason) that isn't junk. Or taking them somewhere.

I did want to throw in, though, that I do agree with your DH. If those boys are at your house all the time, I don't know why the boys parents thought it was okay to not invite your son. Every party we've ever had, I have always stepped in and adjusted the guest list. Yes my son decides on some kids, but we have family friends with children that I will tell him we're inviting too. It seems like they might be taking advantage of the good stuff at your house. And even a 9-year-old is old enough to understand that it isn't fair to go to someone's house, use their video games and pool, and not reciprocate.

 

[Hasil72]

Thank you all. I know this happens all the time, it was just so hard this time.

I'm very open with all the parents about DS. I tell them what to expect and how to react. We are truly blessed that he is VERY high functioning. However, at almost 9, he can't ride a bike, play organized sports, and has the social maturity level of around a 7 year old. The things his class found most "annoying" were his verbal impulsivity (no rude outbursts; he can't wait his turn to share like his life depended on getting it out) and his tendency to be a little obsessive (i.e. if you tell him there wil be xyz later in the day, he will ask repeatedly if it's time yet.) The teacher has explained he has a cushion, a lap buddy, and other OT sensory tools to help him learn. He has "social skills" therapy with the school psychologist and gets to choose another student to go with him. ( I brought this up because how was he suppsed to learn how to deal with his peers by playing games with an adult?) At school they discuss differences and how DS may act a little different at times in addition his class has morning meetings where they talk about behaviors that might bother them (not just DS's) and how the behavior is annoying not the person. The CST won't recommend him for the local autism school summer program because there are too many others with higher need that fill the program. We're on a wait list (4 months so far) for their social skills play group.

One thing that we are trying to figure out is how to explain to DS how he is different from other kids. We had always been advised NOT to tell him or treat him any differently than a neurotypical child. (Any suggestions?)

 

[bookwormde]

I cannot believe anyone clinician who is competent in spectrum issues would tell you not to “treat him any different”. A spectrum individual’s world has very different motivations and perceptions than that of a neurotypical. We learn to adapt to the nerotypical world we do not become nerotypical. The whole system of teaching your child academic and non-academic skills is completely different than for a nerotypical child, of coarse you have to do it differently (unless someone enjoys high level of anxiety in your child).

The first thing before you can properly talk to your child is to fully understand the tremendous gift that being on the spectrum can be for people with the cognitive capabilities to manage it. Since we are logic/fact based just let him know what challenges he will face adapting to the nerotypical world (lack of innate social skill, different EF system, Limited innate TOM skills, sensory sensitivity variances) and the benefits (EF system which allows for innate non-linear analysis, heightened sense of social justice, heightened visual memory and processing capabilities etc.) He will ask questions as and when he needs to fill in the gaps.


I just noticed you are from my neighborhood. I do not know how close you are to the Delaware Memorial Bridge but if you are close you might look at some of the programs in Delaware. They tend to be a little less structured than some but are still good. Here are 2 links for which will lead you to more information.

http://picofdel.org/

http://www.delautism.org/

bookwormde

 

[Hasil72]

I knew I could count in you BookwormDE. When I get home, I'll check out those sites. I'm about 30 minutes from the bridge. I would drive forever if it meant additional resources for Dalton. I was really surprised that our clinicians at both CHOP and DuPont suggested that we treat him as a neurotypical child as to not "increase his anxiety levels by making him feel different or out of place" in relation to his peers.

I'll check back later...net is about to go down at work for upgrades.

 

[bookwormde]

I do not know much about CHOP but for the most part duPont clinicians do not have a clue about HFA and Apergers (but I am trying to educate them), so this does not surprise me from my experience. This reminds me I was at a seminar put on by Jim Ball for teaching social skills and the head OT/Speach department was there and they are in the process of setting up some type of social skills group/therapy program. I still think it is a ways off (the class we are taking does not end until September) but if you have contacts there you might check. Our parents support group meets at duPont hospital on the third Thursday of each month (info is on both sites if gave you) so if you are ever in the area, stop by.

Maybe your son will end up in one of the groups with mine.

bookwormde

 

[BeckyScott]

I suspect that maybe the reason they've told you not to treat him any differently is that they want him to learn to live in our world, not his.

In some ways, it's valid enough. He will need to function in a Typical world, so it's important for him to learn the skills he will need to do that.

However, someone is going to have to explain to him that there are certain things that others do that he doesn't have an innate understanding of, to help him deal with those situations. And guess who gets nominated.

Our DS is 8 and high-functioning autistic and we are starting to deal with the same thing. I think we've been very lucky, in school the kids understand that he flaps his hands and needs extra help with some tasks, but they also know he is really really smart. And that seems to have over-rided any odd behavior. I don't know how long that will last, though.

He knows he is autistic, but he doesn't fully understand what that means. And the only reason he knows that is he's heard us say it, we haven't sat down with him. He knows he flaps because of the autism.

Right now we are having more of a problem with his older brother, who I think is having a hard time with it. Our main problem is this- school is out and the kids are home all day, mostly with me. Older brother is ADHD and a touch Aspie-ish and he requires constant interaction with others. If someone is not playing with him constantly, he will cause problems. And he's in a house with a brother with autism who will happily wander off by himself for hours at a time if you let him. And I spend time with him, but at some point I have things I need to get done. He gets very frustrated if he is not having interaction with others, even when he is on the Wii he wants someone else there watching. Well that is just a problem in our house!

The only time he deals well having a brother with autism is when we are allowed something special because of it. This happened quite a bit at WDW. But also just in the day-to-day, like if we go to Adaptive Swimming at the local pool, the pool is not so crowded and no line for the slide, so of course he thinks autism is good then. I haven't said anything much about it at this point, because I want him to see that autism isn't all bad. Eventually he might be in charge of Justin's care and I don't want him to view it as a total burden.

However you decide to approach it, I think it's important that he also be filled in on the GOOD parts too. There are some skills that are usually very strong with this crowd. There are several books on the market that are kids books that explain things pretty well. I bought a copy of "The Autism Acceptance Book" for our school, it's about autism but mostly about just how everyone is different in their own way, written about 3rd grade level. If he understands it well enough, there are plenty of "famous" people that are Aspie or autistic (Temple Grandin of course is the first one that pops into my head, along with the theories on Einstein, but there are others).

 

[Hasil72]

Thanks again BeckyScott. Right now, I'm trying to figure out what and how to discuss this with DS without making a huge issue out of it. Here's my issue...the neurologist currently has dx'd DS with PDD-NOS or "on the spectrum" since he displays certain signs/symptoms of both autism and asperger's along with sensory and anxiety issues but not enough to "pigeon hole" (his words not mine) him into one specific dx. (For example DS doesn't flap but can't maintain eye contact for more than 2 seconds.) Current neuro wants to "focus on the behaviors displayed rather than a label." For the most part, his classmates are really patient with him and try to help him out in difficult situations. Neighborhood kids are a totally different story.

This is the first year in school when kids have noticed that he has OT "toys" and gets to take walks, etc. I'm sure this will escalate next year when DS has a full time aide in the classroom. She will help guide him with social cues, interrupting (a major issue), etc. Like most on the spectrum, DS is very bright, but there are times when it's difficult to get him to actually DO the work because he becomes frustrated or fixated on something. His organizational skills are seriously lacking. It's strange, I was trying to explain this to my boss yesterday. Most of the time, DS seems almost oblivious to the fact that he is different. He'll think he's friends with everyone, won't hesitate to say HI to the older kids, or thinks he's a part of a group because he's in the vicinity of them while they're playing. Yet there are times when he will just tell you very matter of factly that he has no friends, tell you he is "annoying" to other kids, or if I dare ask what he did at recess that day, he'll tell me, "I walked around. I asked but no one would let me play so I sat on the swings." It's horrible. Then we go into the everyone is different and unique speech. I point out all of his wonderful attributes and abilities, you know the drill. Sorry, didn't mean to turn this into a rant.

Thank you everyone! What would I do without you?

Lisa

 

[BeckyScott]

Me again.

I know this isn't the same either, but about a week ago I had a very interesting conversation with oldest DS. He is 10 and like I said before, ADHD.

I was taking him over to the used-game store to do a trade-in. They know us well there. DS will marathon a game and then once he completes it, he doesn't want to do it again. So we do a lot of trade-in.

We were talking about the games he had, and how he'd finished them, and he started telling me about how he gets distracted and will start one thing and then his brain gets "lost" and he wants to move to something else, etc etc. He asked me what the word was for that. By this point I was laughing and driving, and I told him "honey, that's ADHD. That's why you take pills when you are in school." And he said "Oooooh" and asked me what ADHD meant. And I said Attention Deficit and he said "that's exactly what it is!"

In other words, he figured it out for himself. It just took him a little while, he had to get a little older to understand it. It sounds like your son has noticed he's "different", so it might be a good time to do lessons at home, teaching social skills or doing social stories. Just sitting with him explaining how other people react. Unfortunately, the neighbor kids don't seem to be good examples.

As far as the aide goes, next year, it won't be as noticable as you think. I have noticed in Justin's classes, he has an aide, or shares one. But while the aide is there for him, she also tries to blend in as much as possible. If the kid sitting next to him needs help, she will do it. She appears to be more of a teacher's aide than a para, if you didn't know any better, more of a general helper than someone specifically assigned to one child. There are times in the classroom where he won't need someone right over his shoulder, and the para will busy herself with other things.

 

[bookwormde]

Unless your son has significant language delays (other than pragmatics etc) then for all practical purposes he is Aspergers. It really makes little difference if he has a formal diagnosis or not as long as he gets the supports and accommodations he needs from the educational and clinical communities. It is really you and your child’s choice as to weather to request a formal aspergers diagnosis from the clinicians (some clinicians still resist the Aspergers classification due to outdated thinking about autism). A lot of the DSM-iv is based on maladaptive manifestations so if you are getting him a reasonable level of supports they may never rise to the clinical levels needed for some clinicians.

Congratulations on getting him a full time paraprofessional. This made all the difference for my son. His anxiety level went way down and the ability to generalize all the social, EF and TOM skill increased greatly.

We made it a point to let the IEP team know that we would expect that when the para did not need to attend to our son that she was welcome to help the other children and that we would actually prefer this so her presence was a more “natural” part of the classroom. Of course it helped that she had a lot of natural ability and sensitivity even though initially she had only limited formal training in Aspergers.

Getting back to the original topic, a lot of what should be worked on at school is the “friendship skills” this will help him a lot in these situations.

I have written this before but if your child is able to “focus” on his areas of interest for extended periods of time then he is not ADHD he just has a different EF system typical to spectrum individuals.


bookwormde

 

[Hasil72]

Thank you both! Sorry this may be a little long.

As far as the aide goes, next year, it won't be as noticable as you think. I have noticed in Justin's classes, he has an aide, or shares one. But while the aide is there for him, she also tries to blend in as much as possible. If the kid sitting next to him needs help, she will do it. She appears to be more of a teacher's aide than a para, if you didn't know any better, more of a general helper than someone specifically assigned to one child. There are times in the classroom where he won't need someone right over his shoulder, and the para will busy herself with other things.

- Becky Scott

We made it a point to let the IEP team know that we would expect that when the para did not need to attend to our son that she was welcome to help the other children and that we would actually prefer this so her presence was a more “natural” part of the classroom. Of course it helped that she had a lot of natural ability and sensitivity even though initially she had only limited formal training in Aspergers.

-Bookwormde

Para's have been very frustrating for us until recently. In 1st grade, there was a huge blowup between the Child Study Team, his new teachers and his old teachers. It was ugly; lots of finger pointing and blame-gaming. So the principal was able to provide DS with a part time para but only three days per week and it was a different person each day. Then, that same year, two of hte aides left to pursue other opportunities. I think we went through a total of 6. This past year was a little better. He had one para through December(left for a FT teaching job), then a series of subs, then the para he finished the year with. I've requested that he is assigned the same para for next year for a multitude of reasons. They cannot guarantee it. Anyway, this last para did the same as yours. She was there to guide DS when needed but also helped other students and sort of stood back to give DS his space. We pushed for the FT para vs. an ICS class and his teacher backed us up. He would stagnate in an ICS class beause he needs social support not academic support. The only academic issue he has once in a while is getting him to DO the work. He knows the material, it's just getting him to settle down to do it. Unfortunately, one of his previous teachers had him on what I now refer to as the "independent study" program. Because he would overwhelm her, she let him read in the library area of the class since he absorbs information like a sponge.

I started a discussion with DS this weekend about differences between people and also about independent thinking. I'll keep revisiting the topics to see where it goes. I think he is very aware that he's different; there are just some moments of clarity that overwhelm him. I'm trying to continue pointing out the positives of his "clarity".

DS has always been very articulate. He can focus on his legos and hidden picture puzzles, things like that yet there are other times that he can't sit for more than 2 seconds. The ADHD dx was given before the PDD but after the sensory integration disorder. Five set of docs, four say no to a definitive Asperger's dx, the neuropsychiatrist says, "borderline, we'll have to wait and see". So basically, every time I think I have it all together, something changes, and I get more confused.

Here's our timeline...before 12 mo DS would pull himself up in the crib, turn on the light (unsafe I know, we were in a small apartment) and look at books when he couldn't sleep, walking at 21 mo, could tell you shapes, colors, alphabet, 1-50 in English, and 1-10 in Spanish by 2. We never noticed anything odd but he is our first child so we didn't know what was age appropriate (still don't). Sent to preschool at 2 1/2 and got kicked out for not keeping his hands to himself and "wandered" around the room too much. Tried again at 3 1/2, got called within the 1st 2 months with unusual outbursts of aggression followed by DS hitting his head asking "why did I DO that?" , they had to sit on him during music time to keep him from running in circles, etc. Took him to several docs, all say he's fine, or he's an immature boy with a summer birthday. Luckily, one of his teachers pulled me aside and said she could tell he couldn't help how he was acting, it wasn't malicious or deliberate, maybe I should call the child study team to have him evaluated. Did that, told he has sensory issues, motor skills delays, etc. He was 4 and enrolled in our disabled pre-school program. They said that because of his cognative skills, he was able to modify his own skill set and that's why we never noticed anything "different" about him. At 5 he repeated the program and the ADHD was added to the dx. At 5 1/2 went to the neuro #1 says PDD. OK. Get a second opinion, HFA. Doc #2 sends us for a workup at CHOP, they say Aspergers. Then #2 says no way, wants to keep pushing trilyptal ( I say no) and stops taking our insurance so we try duPont. They say, ADHD but they're full for kids over 5 (DS was 6) can't help us. Finally find a new neuro with a good reputation at the school I work at, he lectures, publishes, etc. He's back to the PDD for reasons listed in the previous post. In the meantime, I read all I can and pick everyone's brain who will let me.

Thanks again for all you!

 

[bookwormde]

Sound like your son got his ADHD misdiagnosis at A. I. duPont about the same time as mine. This is the most common misdiagnosis for spectrum children. It takes a clinician who is highly specialized in spectrum children to differentiate between ADHD and spectrum EF differentials at early ages. It is a real shame because many of the “treatments” for ADHD are contraindicated for spectrum children.

I sent a letter immediately to be included in his medical file disputing the validity of the diagnosis under DSM-iv but it still “haunts” us occasionally.

The only indications we had at preschool were anecdotal ones like he would not say the pledge of allegiance with the other children. It was a very warm and home like environment so I think that had a lot to do with it.

I also pick everyone’s brain and read all the current clinical literature. Thank you for the insight also.

bookwormde

 

[Eeyores Butterfly]

First hugs to you and your family. I hope some of these idease can be used in your situation.

I am an SLP and when I worked in the elementary schools, we always taught the typical peers about a child's disability. The parents came in with either the child (if he/she was capable) or a video tape and described the disablity and the actions that occur. Once the typically developing kids understood the reason for the behaviors, the child with the disability was much more accepted in the classroom.

We also have an autism center in our community and the professionals now have a program they use in schools. They have incorporated social stories for the classmates to help them understand the peer with autism. Each child is different, so they make the stories unique for each child. It is a great program and I wish more communities could have access to it.

My cousin and his wife have an 11 yo son with autism- he is very high functioning and his feelings are hurt frequently. He has learned to explain himself. If someone gives him "the look" or laughs at him, he will simply say, "I have autism and it makes me flap my hands when I am excited." Usually kids respond well to this and they learn his quirks. He now has a few close friends and he is playing on a football league and he is a great player!

I guess education is my advice to you. I don't know how feasible it is in the neighborhood, but I have found in my 10 years in schools and working with children, once they understand the situation,they are much more accepting of diffrences.

Do you mind if I ask what age this is? While I think it is a good idea- many kids do not want to be identified to their peers by the time they reach upper el or middle school. Anything that makes them stand out is bad in their eyes.

Thank you all. I know this happens all the time, it was just so hard this time.

I'm very open with all the parents about DS. I tell them what to expect and how to react. We are truly blessed that he is VERY high functioning. However, at almost 9, he can't ride a bike, play organized sports, and has the social maturity level of around a 7 year old. The things his class found most "annoying" were his verbal impulsivity (no rude outbursts; he can't wait his turn to share like his life depended on getting it out) and his tendency to be a little obsessive (i.e. if you tell him there wil be xyz later in the day, he will ask repeatedly if it's time yet.) The teacher has explained he has a cushion, a lap buddy, and other OT sensory tools to help him learn. He has "social skills" therapy with the school psychologist and gets to choose another student to go with him. ( I brought this up because how was he suppsed to learn how to deal with his peers by playing games with an adult?) At school they discuss differences and how DS may act a little different at times in addition his class has morning meetings where they talk about behaviors that might bother them (not just DS's) and how the behavior is annoying not the person. The CST won't recommend him for the local autism school summer program because there are too many others with higher need that fill the program. We're on a wait list (4 months so far) for their social skills play group.

One thing that we are trying to figure out is how to explain to DS how he is different from other kids. We had always been advised NOT to tell him or treat him any differently than a neurotypical child. (Any suggestions?)

I love this idea of taking a classmate into social skills. Out of curiosity, how did you get the other parents to agree to this? What hurdles did you have to go through?

 

[belle&beast]

Do you mind if I ask what age this is? While I think it is a good idea- many kids do not want to be identified to their peers by the time they reach upper el or middle school. Anything that makes them stand out is bad in their eyes.

We used the family education in first through fifth grades and our autism center has programs on all levels beginning in kindergarten through high school I believe (I work with preschoolers and they are not equipped to handle them .) I have to say this school was exceptional at teaching differences in every aspect and the kids were wonderful to one another. I feel lucky to have been part of such a positive environment, and there are other places that I think may not have been so successful. But I really believe that education is the key and it is a starting point.

I also included typical kids in my small groups for speech to help with social skills. Basically, I just called the parents and asked their permission for them to come to my group. They always allowed it and the kids had a great time.

 

[Hasil72]

I love this idea of taking a classmate into social skills. Out of curiosity, how did you get the other parents to agree to this? What hurdles did you have to go through?

No hurdles. They were very receptive as long as the students weren't struggling academically. The teacher asked DS to choose a couple students that he would be interested in taking with him on a rotating basis. He takes one or two at a time. The counselor sent home a permission form explaining that there is a student in the class who meets with the psychologist to work on social skills and would they mind if their child went along once in a while for support. Only one parent hesitated a little until she knew more about what would happen during the sessions and who the student was that needed the therapy. I gave permission to disclose DS's name and I told her that they basically play games to teach DS what is appropriate in different situations. I live in a district with some of "those" parents who do not want their child to be in the company of a special education student regardless of the disability. (It's all about appearances. "How would it look if anyone sees my Kate with a special ed teacher?" type of attitude.)

On a side note, back in Kindergarten before DS started his therapy, DS was the "chosen one" for another student who needed help. Most kids look at it as a treat to be able to see Mrs. Sbar. Sort of how some of the kids want DS's OT devices. It's a novelty.

Our school also offers a social skills group through the guidance office called Stepping Stones. The counselor has lunch with the group (up to 15 kids in grades 1-4) once a week in the guidance office. They sit in hula hoops to teach respect for personal space and do group activities to reinforce skills learned. They also each take a confidentiality oath. When I first asked DS is there was anyone he knew in the group, he responded, "Now, mom, you know I can't tell you who is in the group. It's personal." He loves it.

Good luck!

Lisa