| Author | |
At_His_Feet
Forum Pro
Joined: April 28 2007
Location: Australia
Online Status: Offline
Posts: 304
|
| Posted: Aug 14 2007 at 5:55am | IP Logged
|
 |
|
And any others who have an opinion and wisdom to share!
Much of what follows is simply my need to vent, so please bear with me!
Our second son has mild Aspergers. He was dx almost a year ago.
We recently moved back to our home town after 10 months away. In that time our son has been dx and has come home, hense not many people in our generic hs group know Campbell or that he is on the spectrum.
Today we had an incident 
At gymnastics he was disruptive etc, I'm sure you don't need me to elaborate! Nothing too bad, just general stuff. I wasn't there for the whole class because I also have a VERY active 3 year old who climbs all over the equiptment, which he isn't aloud to do, so we go walking.
When I returned I was immediately approached by another Mum, who started telling me (very gently) how naughty he was, and that I should stay for the class, and that she didn't think it was the coaches job to keep them in line (but this is a topic for another day!).
So then I started the whole he has Aspergers, a mild form of autism blah, blah, blah.
Tonight I'm feeling rather down, as it has brought up lots of feeling relating to the loss of once dear friends who bacically thought that Campbell just got away with too much, and that he was playing us! You know how it goes, the bad parent theory causes ASD!!
This whole thing only happened over Easter.
My dilema is this, should I start an "education programme" for my hs group via our web page, and through discussion etc. I feel like I should be telling the world about asd, for my son and also for the next asd person they meet, or even just so that the next time they are in a supermarket and they see a child having a wobble, they don't automatically think "Will that parents controll that kid!" But I don't want everyone to think of him as different, even though he is, of course. But you know what I mean.
Do any of you have wisdom to share over this?
Wishing you all a happy Assumption feast day tomorrow.
Update.
One week has past. The coach was happy to have campbell for the whole lesson. Today he was Mr. Perfect. No aspie traits in sight! Unfortunatelt the same couldn't be said for Mr 3, who was not impressed at being forced to stay in the stand for an hour! 
After the lesson I had a long chat with the coach, who was happy that I had some info. for her to read.
Thanks for your support and prayers everyone.
Tricia
__________________
Tricia
Mum to 3 boys 17, 15, and 10.
Do whatever He tells you
|
| Back to Top |
|
| |
KC in TX
Forum All-Star
Joined: Aug 05 2005
Location: Texas
Online Status: Offline
Posts: 2621
|
| Posted: Aug 14 2007 at 7:27am | IP Logged
|
|
|
Oh, this is a hard one. Most of the moms in my homeschool group know my son is on the spectrum so it's not an issue there. I do get this from my own family although they've quieted down some.
I know of a lady who has a pamphlet she has made to help people understand and really know where her child is developmentally. It has detailed information about this kid's language skills, social skills, etc. It's pretty neat. Also, one of the website on line has a card that you can give to people (you don't even have to say a word) that states something along the lines of "I apologize if my child was disturbing you. AUTISM is a neurological disability affecting about 1 in every 150 children born today. Behavior that may on the surface seem rude is my child's ONLY way of dealing with the world. If this is the first time autism has touched your life, be grateful--and please be understanding."
I've considered giving a group class to the older children in our group to help them help my son in various situations.
I don't know if I've been much help. I'm sorry about what you've had to deal with. It can tough and at times lonely.
__________________
KC,
wife to Ben (10/94),
Mama to LB ('98)
Michaela ('01)
Emma ('03)
Jordan ('05)
And, my 2 angels, Rose ('08) and Mark ('09)
The Cabbage Patch
|
| Back to Top |
|
| |
Lori B
Forum Pro
Joined: March 24 2006
Location: Canada
Online Status: Offline
Posts: 209
|
| Posted: Aug 14 2007 at 8:51am | IP Logged
|
|
|
Our 12yod has Asperger's, so I know what you're going through. I always let people involved with group activities with her know about the AS (she used to take ballet and tap, played soccer, plays hockey). Her behaviour is never disruptive, but she often will not respond to a question, or turn her head away when someone tries to engage her in conversation (this is improving every day, though).
I would much rather risk them treating her as 'different' than think that she is rude or cold when she isn't.
|
| Back to Top |
|
| |
Anneof 5
Forum Pro
Joined: June 10 2006
Location: N/A
Online Status: Offline
Posts: 217
|
| Posted: Aug 14 2007 at 10:13am | IP Logged
|
|
|
I do not have a child in the spectrum, but as a mom who sits in the waiting room twice a week for my two kids who go to OT therapy, my eyes have truly been opened. I am sure that in the past I have been guilty of judging others' parenting skills and then God gave me my own two who have some pretty different behavior at times, too, and I get the stares, etc. A lot of the kids receiving therapy where we go have autism and aspergers and I can really understand a bit more than I did in the past. But I would welcome the info if I were in your group. Parents who don't have to deal with this sometimes have no clue how hard we are trying and I think most parents would love to learn all you can teach them. I wish you well!
Anne
|
| Back to Top |
|
| |
folklaur
Forum All-Star
Joined: Feb 07 2005
Location: N/A
Online Status: Offline
Posts: 2816
|
| Posted: Aug 14 2007 at 10:16am | IP Logged
|
|
|
My ds8 has Asperger's. Usually, especially in a group situation like that, I will stay for the class. I feel like I have to, since the fact is he is different, and there can be incidents, and I want to be sure to be there.
It is so hard, I know! I once read someone's blog - can't remember where now - who said that so often, "Autism just looks like poor parenting." Oh, that struck such a nerve with me. 
However, I had an incident at the pool just the other day. Another child took my dd5's doll, and wouldn't give it back. The mom just stayed in the water saying, "Trina, Trina, come here..." which she didn't and just laughed and ran back and forth outside of the pool. Finally the moms friend got the doll - and then the mom gave it back to her daughter to come and give to my daugghter, at which point the head got almost pulled off. My daughter just watched all this with dismay and looked at me like, "Mom do something!" After she finally got it back, the Mom comes to me - never apologizing - and says, "My daughter doesn't understand, she has autism, so she doesn't get that she shouldn't take it..." To which I have to say I was too stunned to say much of anything, since my son has autism, I deal with it everyday, but it does mean it is my job to be more vigilant. She then went off with her friend, and just chatted with her back to her daughter, while her daughter continued to terrorize others in the pool. I am obviously still upset about it  . I mean, yes, she may have autism, but then it is that Mom's job to be more present to the situation, not less.
Anyway, I think it is important for other to know your ds dx. Asperger's is so hard, because it is so often a silent disorder. Our Aspie kids "almost" fit. And that is what makes it hard. It IS so hard to feel that others may label him or treat him differently if they know his dx -- but they might label him incorrectly anyway. I have found once I tell people, they are understanding.
I have a friend, whose son is 10 and he has autism. He "obviously" has autism, if you know what I mean. She said to me just the other day, that she thought Jaiden's Asperger's was so much more difficult to deal with than her David'd autism, because Jaiden was "just a little off" whereas her David was obviously autistic.
Asperger's is HARD (and exhausting.) And feel free to vent away. And as long as you are always doing the best you can, than that is all you can do, right?
|
| Back to Top |
|
| |
ALmom
Forum All-Star
Joined: May 18 2005
Online Status: Offline
Posts: 3299
|
| Posted: Aug 15 2007 at 5:45pm | IP Logged
|
|
|
Aussie Mum: I've been pondering your post thinking about what a good mother you seem to be and how difficult that day must have been. I do not deal with all that you are trying to deal with. I do know that every mom with any out of the ordinary demands often needs extra support - and that seems to be a great need for you right now. My prayers are with you. Wish I could be there and walk around with your toddler so you could do whatever you need to make it all work for you and your child.
I'm thinking about our co-op last year and what made it work - and it was the charity of the mothers involved. Now, granted no one happened to have autism issues that I'm aware of - but there were children who had vision and attention deficits, some with severe allergies that impacted behavior, etc. and there were moms with toddlers (some of these having the above mentioned older dc) where the day was just plain long for them and sometimes moms who were stressed because several dc in a large family were out of sorts and stresses were building and ... it makes a difference whether we are empathetic and recognize the frustration and embarrassment of a mom when her dc disrupt and yet knowing that these dc were not being bad kids, they just got overloaded and mom was too. Then you try to think, how can I help. Of course if you are the teacher in a situation that stresses you, you may not initially respond in the best way and hopefully everyone understands as well. I've had to ask for help from moms - but I see it as related to my inability to do real well in groups and after the fact could look back and think gee I had to call on mom to help because I couldn't let thinks spiral - but this child may have responded better ... At the moment I just needed help and was frazzled. I really appreciated the moms who chipped in and then later let me know how their child responds best.
You are dealing with both an older and a younger child that needs you. You are pulled to be two places at once. It sounds like you and your dc need this interaction and need it to be positive. Hugs and prayers as obviously that was a bad day - and if it happens over and over it wears you down.
I think recognizing that you need support - to be there for your older child- and yet you do have a toddler who needs supervising, I think this is a time that it might be beneficial to all involved to ask for the help you need. I'm not saying make a general announcement or in any way invade the privacy of your child - but for instance, if the child is expected to pay attention in a situation that you know is setting him up for failure due to his condition, then you may need to address this challenge of your child and suggest ways that both the teacher and you together can make it work. In doing this, you educate those directly involved with teaching your child or with organizing the co-op about asperegers/autism in the sense that you briefly explain things that you might need for your child. You may also need to ask for specific support or activities for your toddler so that you have some time to be there for your older so you can help him develop in areas that you all are working on. Is there another mom who would play a game with your toddler or ...perhaps bring something to occupy these littles during this particular period so you would be free to help your other child.
This way you are not coming close to using any disability as an excuse and I don't see how anyone could possibly misinterpret things this way. You are acknowledging the need of the class to have greater order without making your child out to be a burden. The behavior may be disruptive but the child cannot help it - but the teacher cannot work in a group if you have major disruptions. I know what that is like just trying to read stories to overtired 3 yo at the end of a long day.
You may be able to speak privately with the teacher or confide in a mom or two about needing some respite from time to time. If you are comfortable and close and confident of discretion you may want to share a few things that really do set your child up for success rather than failure.
I know my experience (but since I am not dealing with your issues I cannot speak for you - we do have a LD child in our home during the day and vision problems so my extra challenges are temporary and hope and pray this is helpful, but if not, please do understand this is not meant in any way other than heartfelt concern for your real need for some support)that with my children interacting with those among us with special challenges, honesty (discrete and in a way that does not invade privacy) really does benefit all. My dc do not treat their cousin like anything but another kid which is what he is, but just as I would tell my older dc that they must be careful wrestling with the 4yo, I do tell my 4 yo that he should not run up from behind and tackle this child in our home (who it appears has some sensory integration issues)as that is particularly uncomfortable to him. I also do have to tell this child that he cannot punch my 4 yo and I try to find ways to help him communicate to me that he is getting overwhelmed and needs me to step in. I try to anticipate and head off before this point but I do realistically have 6 children. It is hard to sometimes remember that I have two dc of very differnt sizes who both have the social skills of a 4 yo. I'm not sure I'm being any different or singling out the special needs by demanding that these particular needs be recognized (this child does not like to be touched so we respect that). I also tell my boys that dd cannot concentrate for her math if they are talking in the room. I expect you are dealing with all these kinds of things on a real intense level - but charity requires that we all do the best we can to accomodate each other and there is some give and take here. I don't see this as treating anyone any differently.
So I see nothing wrong with educating people to the needs of someone with autism - I try to do this for all my children in ways at times when I anticipate trigger things. One of my dc is very sensitive to being put on the spot due to spelling, fine motor and other issues. The teachers were glad to know this and were sensitive to my child's needs. We set the situation up for both the teacher and the child to have a positive experience with each other. That child who struggled with so much, actually fell in love with Latin - the teacher was so sensitive because she knew what he needed.
I cannot begin to really understand your struggles, but my prayers are with you. Hugs.
Janet
|
| Back to Top |
|
| |
MEBarrett
Forum All-Star
Joined: Feb 15 2005
Location: New York
Online Status: Offline
Posts: 596
|
| Posted: Aug 15 2007 at 6:19pm | IP Logged
|
|
|
Aussie Mum:
I have been there. As someone mentioned ASD problems can be amplified because it isn't always obvious that the child is disabled.
You've gotten some great advice here. I would lean more toward taking the coach aside and explaining your son's disability to him. If he feels overwhelmed by it or is unwilling to have ds in the class then I would find another activity. I've had to do this more than once. But if he is willing to work with your son then I would try to stay for at least one class (maybe a babysitter or portable DVD to keep the young one occupied for one class) and just give the moms a heads-up. Kindly explain that ds has a nuerological disorder that makes following directions and keeping order difficult. Also explain sensory input for an Aspie kid is different and the noise might make him a little more apt to be wired. As he attends class he'll get used to the new sights/sounds/routines and things will get better.
I have found that once most people understand they are generally kind. That being said, here on Long Island ASD is so prevalent that most people know someone who is affected and most of the extra-cuuricula places, karate, dance class, etc.. have special classes or just simply include the children and are nicely accomodating.
You should also try to make you son understand that he will have a lot more fun at class if he behaves more like the other children. I try to use other children as an example for Ryan when he is acting oddly or inappropriately. I tell him, "do you see your friend Ben, he isn't doing that, try to sit nicely like he is and you will get along better." Drawing his attention to his behavior in a kind but firm way often helps because sometimes he is honestly unaware he is not fitting in.
Ryan wants badly to have friends and fit in and I'm sure your son does too. ASD kids don't assimilate those skills the way other children do so you may have to tell him, "this is the way big boys do this..."
In any event, however you handle this just know that you are doing a great job and he will eventually find his niche. It is a hard time, right after dx, processing all the info and getting used to the changes that are inevitable. God chose you for this child and I think we can all agree He knows what he is doing. So pray, pray and then pray and trust God to help. He will.
__________________
Blessings,
Mary Ellen
Mom to seven beautiful kids
Tales from the Bonny Blue House
O Night Divine
|
| Back to Top |
|
| |
At_His_Feet
Forum Pro
Joined: April 28 2007
Location: Australia
Online Status: Offline
Posts: 304
|
| Posted: Aug 15 2007 at 10:53pm | IP Logged
|
|
|
Thank you so much for your prayers, and kind words. I have gained something from each of your responses.
I have put a call into the coach and am waiting to hear back. I did mention to her that he has AS. I'm hoping that Campbell will be able to go in to the older coaches group for the hour, as I know that he will respond better to her firmer hand.(The other coach is only about 18 and therefore very quiet) I also would like him with the other coach because he will then be able to spend half of the class with the older kids, one of whom is a close family friend, and even thought he is only 15, Campbell looks up to him and responds well to him.
I'll have to organise something so that I can stay for the whole lesson. Most of the other Mums go off and do other things for the hour, but a friend of mine will I'm sure help out with Riley (3). I really just wanted this other Mum to know that there will be days when it won't matter if I'm there or not, that he will be off putting, loud, disruptive etc, but I really believe that he needs and deserves to be there too. Especially as he has gross motor problems, go this type of fun excercise will be beneficial for him.
Having said all that, I should also say that while he is on the spectrum, he is quite mild. I think that he fits the PDD-NOS category better, as he only just scrapped into a dx as per the DSM-1V. So we are fortunate that he doesn't stim and he isn't over sensitive to noise, touch etc. He is under-sensitive eg. mouths EVERYTHING, high pain threshold, can't tell if his shoes are on the wrong feet etc.
And he even managed to have a friend when he was at school a few months ago, which was very rewarding for me as his Mum, knowing that it could happen, especially after waiting so long. How long it would have lasted is another thing! So, while it is difficult, I know that we are blessed that Campbell is fairly easy by comparrion with other ASD kids.
The Mum who spoke to me of course had every right to do so. I can only imagine what ran through her head after she asked him to behave better, and she was told by Campbell that "I'm going to cut your mouth off" etc etc!! I know what I would have through if I didn't know or suspect anything about AS! (We have been working hard at stopping this type of verbal abuse, but with me not being there, and being told that she would talk to his mum, his anxiety would have skyrocketed, resulting in these comments) So yes, I messed up by not being there, but we all live and learn!
Talking to this Mum, just instantly brought back all the anxiety and memories related to the end of the friendship I mentioned earlier. It was that, which I was really reacting to.
Tricia
__________________
Tricia
Mum to 3 boys 17, 15, and 10.
Do whatever He tells you
|
| Back to Top |
|
| |
aussieannie
Forum All-Star
Joined: May 21 2006
Location: Australia
Online Status: Offline
Posts: 7251
|
| Posted: Aug 16 2007 at 1:27am | IP Logged
|
|
|
At_His_Feet wrote:
| Talking to this Mum, just instantly brought back all the anxiety and memories related to the end of the friendship I mentioned earlier. It was that, which I was really reacting to. |
|
|
Tricia I am so sad to hear of your anxiety. These sort of things naturally affect us deeply, especially if friends judge, lacking themselves a balanced prespective and charity.
Meeting and observing Campbell myself, it is disappointing that others have overlooked the beautiful qualities he possesses and cannot see that his problems are of a physical origin.
I will not forget sitting around a smoldering fire at camp early one morning with Campbell and being touched by him nor his great excitement dressing up as St Patrick.
I will offer a prayer that solutions can be found for this situation at present. 
__________________
Under Her Starry Mantle
Spiritual Motherhood for Priests
Blessed with 3 boys & 3 girls!
|
| Back to Top |
|
| |
At_His_Feet
Forum Pro
Joined: April 28 2007
Location: Australia
Online Status: Offline
Posts: 304
|
| Posted: Aug 16 2007 at 4:20am | IP Logged
|
|
|
Thank you so much Anne.
I know that the look of pure joy on Campbell's face when he stepped from behind the curtain as St. Patrick, will be one I'll remember forever.
It's comforting to know that people can see past his more challenging behaviour. He is a wonderful little boy, and he brings us all so many blessings. I especially love his literal take on language. Only this week my dh said "There will be hell to pay if...", Campbell then asked how much hell costs! There are plenty more. 
Tricia
__________________
Tricia
Mum to 3 boys 17, 15, and 10.
Do whatever He tells you
|
| Back to Top |
|
| |
Willa
Forum All-Star
Joined: Jan 28 2005
Location: California
Online Status: Offline
Posts: 3881
|
| Posted: Aug 16 2007 at 10:13am | IP Logged
|
|
|
I would introduce the group to the information. One girl in our homeschool group has allergy issues -- she can't have gluten, and the group has been wonderful about providing gluten-free alternatives for snacks. Two of the kids have special needs -- one is my Aidan -- who limps, so people are usually alerted to his special status right away. They know his history, so I don't have to make an effort to educate them, though sometimes I do bring up "special issues" in a casual way just so they understand that when he wanders or does something unusual for an 8 year old, that I'm not just letting him get away with it.
But there has been a lot of rallying around to make accommodations for the kids who are a bit off the beaten track.
I think if you have a few supporters and advocates in your community, you find you don't have to tell the whole world -- those in the supermarket, etc.
At least, I don't.
Quote:
| Only this week my dh said "There will be hell to pay if...", Campbell then asked how much hell costs! There are plenty more. |
|
|
How cute!  
__________________
AMDG
Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
Take Up and Read
|
| Back to Top |
|
| |
albeto
Forum Pro
Joined: March 03 2007
Online Status: Offline
Posts: 105
|
| Posted: Aug 19 2007 at 10:14pm | IP Logged
|
|
|
At_His_Feet wrote:
When I returned I was immediately approached by another Mum, who started telling me (very gently) how naughty he was, and that I should stay for the class, and that she didn't think it was the coaches job to keep them in line (but this is a topic for another day!).
So then I started the whole he has Aspergers, a mild form of autism blah, blah, blah.
|
|
|
Oh, how my heart goes out to you and your family! I know exactly how you feel! You think, "Hey, this kid can do this and I need to take care of my other children" only to come back to a hurricane of hurt feelings, overwhelmed emotions, confussion and frustration. Fwiw, I have only recently left my ds alone in any group and that was when he insisted. It also happened to be a drama "camp" for Aspies so I knew he was in good company (but for the first two days I hung around out of site with my other two children). I swear, if I ever write a book it will be called Waiting Room Kids because the siblings grow up in therapists waiting rooms. Who can leave their precious, fragil child knowing, no matter how small the chance, if something does go wrong, it could be big. And I mean BIG.
My ds went to the ps for first and second grade in the town we now live in. Although I came with an IEP, information, phone numbers of some very well-known professionals, the new school was adimant about treating him as a "discipline problem." Of course that only made it worse. In so many ways, some of which we are only now finally seeing some healing from (he's beginning seventh grade now, officially homeschooling). Yes, the notion that our kids act out because of dormant parenting, lazy parently, down-right foolish parenting is so easy to assume. As hard as it is, I believe these little lessons of humility have strengthened my faith as I have learned who I really am in relationship to Our Lord. I'm a fool, a self-professed important person, lazy, and glutonous fool. But in spite of that, Our Lord still offers to take me into His fold. The shear magnitude of His gift overwhelms me at times.
I am only now learning how to appreciate these moments of humiliation, for they teach me humility, and from that I can understand His great love for me and my precious children. I learn that He loves me in spite of my spiritual "autism" ("no, God, MY way" "it's MINE, God," "I'm too afraid to do this, I'm frozen on the spot," "you say you love me but what's in it for me now?"). I must set aside my former notion of what is important, what is worthy of my attention, what is valuable. Instead, I am learning (slowly, very slowly) that how much I reserve my affection from my children, God help me, because they wound my pride. Yes, humiliation can be a great learning tool if held in the right light. Now I am trying to embrace my child's akwardness, embarrassing traits, frustrating moments and irritating characteristics and loving him for the boy God created. And raising him to be the man God intends.
And that brings up the practical aspect of my thoughts. When my ds in involved in anything, I am behind the curtains because, like you know, at any time things could fall apart. Like I wouldn't leave my three year old somewhere alone, I wouldn't leave my emotionally three year old-like boy alone. I dragged my other children around (thus, they grew up in waiting rooms) or I hired a babysitter for those activities. I'm not saying its better that way - I never had the confidence to do it any other way.
I got an email not too long ago about this kind of thing. I found a website that it was taken from http://www.kidspeace.org/healingMagazine/NEWHealing/healing_ ss06_7.htm It is called "0 Things Your Student with Autism Wishes You Knew." I think they are priceless, and although tailored for teachers, I think you could make this very useful for your hs group as well as any professional who works with your child.
It starts off like this: "1. Behavior is communication. All behavior occurs for a reason. It tells you, even when my words can’t, how I perceive what is happening around me. Negative behavior interferes with my learning process. But merely interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow." I like it because not only does it explain our kiddos seeminly "naughty" behavior, it also gives some easy to impliment, practical ideas to really help. So your child's coach can learn to say, "Son, we don't run around the mats here. Please stand here until further instruction."
|
| Back to Top |
|
| |
At_His_Feet
Forum Pro
Joined: April 28 2007
Location: Australia
Online Status: Offline
Posts: 304
|
| Posted: Aug 21 2007 at 5:02am | IP Logged
|
|
|
Bump. Update.
__________________
Tricia
Mum to 3 boys 17, 15, and 10.
Do whatever He tells you
|
| Back to Top |
|
| |
|
|
4Real Forums : Special Blessings
Topic: Calling all ASD mums. Update
