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STRUGGLING WITH BIG EMOTIONS AND MY AUTISTIC CHILDREN – a guest post from Erik Young

Erik Young

Erik Young

Erik Young has very kindly provided us with this fascinating article about dealing with the emotions of being the parent of a child with autism..  I have to say this is a must read article for all of us with children with ASD.

As he says “Erik specializes in working with children and teens diagnosed with autism, intellectual disability and behavior disorders.  He was a clinician for Devereux for over 13 years before he started his private practice.   Eleven years ago, Erik and his wife decided to try to take what they know worked in the clinical setting and apply it at home. To this end, they started to provide foster care for special needs children.  The result has been a sometimes frustrating, but always enlightening and wonderful roller coaster ride.”

To find out more about his services or to schedule a free consultation go to: www.erikyoungcounseling.com

I.                   A confession…

It’s almost Valentine’s Day and, of course, I’m thinking about how much I love my two autistic boys.  Originally, I was going to write about the different ways my boys show affection and love, but that’s not where my head keeps going.  No, I keep thinking about the crazy, strong and often contradictory motions that come with loving an autistic child.

You see, while I love my boys with all my heart, there are times that I also really kind of hate them.

There.  I said it!  I’ve had what can be labeled as hate in my heart for a child.  Even just thinking about it brings on a deep sense of shame…let alone putting it out there for the whole internet to see.  Here’s the thing, I never shared this with anybody.  Here I am, father, therapist, special needs parenting expert…hating  a child?  What would people say?  So, I kept my dark secret.

Then one day I was working with a parent on how to manage her child’s meltdowns.  She broke into tears in the session and confessed that she felt shame that when he was in the depths of his meltdowns she felt hate for her child.  All of a sudden, I wondered if I wasn’t alone.  The very next day, another therapist friend of mine recounted a similar story of one of his clients confessing that they both hated and loved their child.  He even went on to say he had had those feelings himself toward his kids.  All of a sudden, my dark secret that nobody could understand started looking like a very common situation for parents of exceptional children (perhaps even all parents).

II.                 Love and hate

I then started querying my clients carefully and compassionately. Overwhelmingly I found that they not only shared this love/hate dichotomy, but that they almost all universally felt shame over these feelings and kept that shame to themselves.  What must this be doing to their self-esteem and stress levels?  Sure, there is this idea that good parents love their children unconditionally.  Does this also mean that we can’t be upset and hurt by our children’s poor behaviors?  Can we not be frustrated and at our wits end?  Does this mean we are bad parents?

In my many conversations with my clients, friends and colleagues, I came to the following conclusions:

  • If this is as common as it seems, then it’s probably not  a bad thing.
  • “Hate” is probably the wrong label to apply to feelings that arise from our frustration.
  • These negative feelings, while painful, are based in love are nothing of which to be ashamed.

Feelings are ALWAYS true.  If you are angry….you’re angry.  That simply means that something is happening in your world about which you feel angry.

The emotion itself is neither good nor bad.  It simply is.

The problems arise from how we express anger (or any other emotions). So, when your child is behaving in a way that wears you out, upsets you, pushes your buttons….it’s normal to feel frustrated and angry.  It might even feel like hate.

As long as you process and express that emotion in a positive, constructive manner, all is well.

In fact, a lack of feeling indicates a lack of connection and love for your child.  The truly dangerous situation is when you don’t care enough to get angry or feel.  The fact that your child can get you angry means you love them (ironic, no?).

I don’t even think, at this point, that “hate” is the right label for these complex emotions we parents experience.  For me, deep down, the problem is that my child is struggling or hurting and I am struggling to be a “good parent” and make it better.  In the face of my perceived helplessness, I become despondent and frustrated.  So really, the issue is not my child’s behavior (and how I perceive my child) but the issue is my inability to fix what is most likely an unfixable problem (at least in that moment).  It’s MY issue…not my child’s.  I don’t hate my child, but I’m feeling helpless.  No parent I know likes to feel that way..and you know what?  That complex interaction of emotions is most DEFINITELY based in love.

III.              Tips for coping with strong emotions in you and your child

So, I’m sure you’re thinking, great… but what do I do when I “hate” my child?  Here are some tips to manage your “big emotions.”  These re things you can also teach to your child.

  • Be gentle with yourself.  Let yourself feel the big emotions, but know that they are normal.  No need to make matters worse by beating yourself up.  The fact that you feel means you love.
  • Name those emotions.  If you can do that you have, without even thinking about it, helped your “thinking brain” keep you from being “hi-jacked” by what you are feeling.
  • Feel, don’t act. Let the emotions run their course…but don’t act hastily on them.  The crisis will pass.
  • Don’t take it personally.  Whatever your child is doing, don’t take it personally.  Chances are that its not about you…but about something they are struggling to cope with.  What they may be doing to you is because you are a safe person to “vent” at.
  • Breathe, Don’t panic.  Breathing activates the relaxation response and helps reduce anxiety.  It can keep our brains engaged and allow us to stay in a place where we can actually help rather than get swept away by big emotions.
  • Do something physical.  Take a walk, chop some wood…something to burn the energy that strong emotions can bring to us.  The exercise also helps the mind to think more clearly.
  • Share.  Find trusted friends, family therapists or whatever and share your struggles and your feelings.  Put it out there.  You are not alone and you don’t have to struggle alone.  Sharing the load makes t easier to bear.
How easy was it to get your child diagnosed with autism?

How easy was it to get your child diagnosed with autism?

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Unlimited Potential – a film about autism with Dr Stephen Shore – a guest post from AttitudeLive


Dr Stephen Shore

Dr Stephen Shore

AttitudeLive of New Zealand have asked us to share this guest blog post with you about a new short film looking at ASD and the work of Dr Stephen Shore.  Dr Shore is himself autistic.The blog was written by  Dan Buckingham one of the produces at AttitudeLive.  Outside of work he represents New Zealand’s wheelchair rugby team, the Wheel Blacks.

He shares ”

As a toddler, Stephen Shore was struck with what he now describes as ‘the Autism bomb’, which, for most people at that time, would have meant a life sentence in an institution.

His path however was one that would defy the expectations of that time.

Through extensive support that would have seemed ground breaking for the mid 1960s, he became verbal by the age of 4, and continued to go from strength to strength.

Stephen is now a professor at Adelphi University where his research focuses on matching best practice to the needs of people with autism. He also teaches music to children with autism and has written many books about the condition.

In this short film he talks about some of the obstacles he’s overcome, the social situations he’s navigated, and provides some advice for parents of children with autism.”

You can watch the film here http://attitudelive.com/blog/dan-buckingham/film-unlimited-potential


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Autism and Challenging Behaviour Part Five- Getting a Haircut

Autism and haircuts

Autism and haircuts

Now when I was my son’s age I have to admit that I hated getting my hair cut.  I think it was the boredom of waiting so long for the barber to get round to me that did it.

But with our son John this is not the case at all.  He hates having a haircut and when I mean hate I really do mean hate.  So much so on one of his first outing to my mother’s hairdresser the people from the shop next door came over to see if there was a problem.  So meltdowns were the order of the day.  You can find some great tips for dealing with meltdowns in the comments section of one of our older blog posts here https://patienttalk.org/?p=2349.  Why?  Well in John’s case he has sensory processing disorder which means the feeling of having his hair cut is, to him, one of massive overload of the senses.

Over the years we tried various strategies.  These included cutting his hair at home by a professional hairdresser who is also a friend.  The poor woman ended up cutting her hand with her rather sharp scissors during the haircut as John attempted to do a runner!  We also went to a specialist autism hairdresser.  The problem was that she was only available during the hours that my wife and I were at work.  Even if we could have made it would have taken around an hour’s journey to get to the venue.

So how did we solve the problem?  Well actually luck rather than judgement.  He rather desperately

Autism and haircuts

Autism and haircuts

needed his hair cut and our then nanny Willow offered to take him.   It turned out that she had spotted a local barbers shop which she thought could help.

I had a haircut there yesterday so I thought I would take the opportunity to show what the big draw for Willow was in two pictures illustrating the blog.  As you can see they have a car.  One John could sit in.  And you can see the TV as well – offering a section of the finest space-related cartoons that humans can make.  Not just that – in his hand was Willow’s iPhone with an exciting game of “Angry Birds” on the go.  Did it work?
Well more or less.  His hair got cut and no one went to hospital.  But most importantly he started to calm down when his hair was being cut.  So yes it is a rather incremental thing but it worked for us.

In fact these days he is happy to grasp an iPad and  have his head clippered as long as it takes less than five minutes.

That’s how we did it.  How about you?  One of the objectives of blog posts like this is to get other members of the autism community to share their experiences with others.  It would be great if you could share your story about getting haircuts either for yourself or your loved one.  Please feel free to use the comments box below to share.

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You might like to think in terms of the following questions:-

a)                        Did you have particular problems with haircuts?

b)                       What was the root cause of the problems?

c)What techniques did you use to overcome the problem and end it with a cut which worked?

d)                       What advice would you give to a parent about to embark on the hair cutting  autism journey?

And finally there is another option.  Don’t bother.  One of the boys in John’s class (they all have ASD) just has long hair.  It’s clean and looks great.  Albeit a bit heavy mental fan circa 1980.  So that may prove the best way out.

 

Kylesmum My 5 year old will have a meltdown with every haircut but the funny thing is that he will keep still … it’s so hard for me to watch cause what we do is that my husband will cut his hair with the clippers whist my son is sitting in the bath (empty of course) and he puts up with with about 10-15 mind of very emotional crying, trembling and sweating but once he is done he hits the off button on the machine and my son will start so sing and laughing with relief.
We have tried to put him in the empty bath with lots of thing to try to distract him but nothing seems to work e.g. iPad, favourite toys, turned the bath into a ball park nothing seems to calm him but as I said the only good thing is that he wount fight it and he can get his hair done quickly
Kylesmum My 5 year old will have a meltdown with every haircut but the funny thing is that he will keep still … it’s so hard for me to watch cause what we do is that my husband will cut his hair with the clippers whist my son is sitting in the bath (empty of course) and he puts up with with about 10-15 mind of very emotional crying, trembling and sweating but once he is done he hits the off button on the machine and my son will start so sing and laughing with relief.
We have tried to put him in the empty bath with lots of thing to try to distract him but nothing seems to work e.g. iPad, favourite toys, turned the bath into a ball park nothing seems to calm him but as I said the only good thing is that he wount fight it and he can get his hair done quickly .
MylaBides my husband and i used to wait until my daughter was asleep before we cut her hair. that was until she was 8-9.

then we bought clippers which we first used on my younger son while she watched. when it was her turn, she didn’t protest. maybe because she saw my son was alright. or maybe because she was playing around the playground, walking around while my husband followed her around.

of course he had to use rechargeable clippers. the wire simply will not cut it–pardon the pun!
Timingreenville At that age he would sit in my, his dad’s, lap.
Timingreenville We were very concerned with taking our 16 year old. I spoke to Christian at Great Clips as she cut my hair. She said to bring him in and they would work with in. A big issue with us is getting him in and out of the car. Transitions can be very hard for him. This time he sat through and shocked my wife and I. Then he got up and had to turn off the lights. I tried to prevent but he had to do it. Then he walked right out like no big deal.
Now with summer we will buzz him outside on the deck. He has gotten better about getting around his ears. It tickles.
SarahMKInnes My (almost) 7yr old (ASD and ADHD) just had his hair cut today. He will only have it cut at Sharkey’s (kids haircutting place) and will only allow the hairdresser use scissors – NO clippers whatsoever. Today there was a minor meltdown when he found out that their Super Mario game had worn out and they threw it out (he is obsessed with Super Mario) but once we got over that he was a bit squirmy but made out ok. I find what helps is if the hairdresser warns him beforehand (eg. “I’m going to spray some more water now”). We also try to make sure it is the same person every time that cuts his hair.
SneakyMumInOmaha Read SneakyMumInOmaha
SneakyMumInOmaha My 5yr old screams bloody murder everytime we try to cut his hair…except for that time when he woke up with a buzz cut. Oh yes I did. The trick is to turn the clippers on from a distance and then walk toward him. They’re pretty loud when you fire them up. And make sure your clippers are well oiled so they don’t pull his hair. You don’t want him waking up with a partial buzz-cut. And you’ll want to lay a towel down for easy cleanup and an itchless night. Good luck 🙂

 
sneedley13 Similar to PeterKijek below , our biggest problem was getting Connor to sit still in the chair. He also like to look around and see what everyone is doing. He now plays with the iPad/iPhone when he’s in the chair. We have found that he is much better when his Dad takes him rather than me, usually because he will get his hair cut at the same time (first) so Connor can see it, although we still have problems around the ears, either with the clippers or the scissors!
marionburns TiffanyIvison  https://www.facebook.com/profile.php?id=106711162797745&ref=ts&fref=ts

get in touch and i will talk you through some tips .
TiffanyIvison I have not found a way to make it work yet and am open to suggestions! My son is almost 2 and was just diagnosed with Autism, we already knew he had SPD. He was born with a lot of hair so we have had to visit the hair dressers many times and it gets worse with each visit. We are due for another cut soon and I have anxiety just thinking about it.
EricaPurtell I’ve found that if my Partner (his father) gets his hair cut first with my son watching we’re all good until we get to trimming around the ears- that’s the only thing we have a problem with….
lifeisarainbowmummy My son is actually sensory seeking at times and he loved my hairdresser who offered head massages even as a baby so he looked forward to getting his hair cut. We had major issues when my hairdresser went on maternity leave but we managed to convince him to let my new hairdresser cut his hair. One interesting thing we have found is that our son dislikes parting with any part of himself, after every haircut he has had, he has got down on the floor and picked up every last hair… thankfully he has the angelic looks to get away with it and hairdressers happily provide him with a bag – and we have a money bag full of hair for every single haircut he has had in the last 6 years! We even have a little tub of nail clippings (bag over head) as he would not let me clip his nails which he despises unless he could keep them. He was also terrified of losing his first tooth and sobbed for an hour when he realised his tooth was wobbling as he was terrified the tooth fairy would take it from him. We had to promise he could keep it in his sterling silver my first tooth box and wrote to the tooth fairy to ask if he could keep it. He still got a pound and a very reassuring letter from the tooth fairy!
marybethpalo I too had the same problems – what I had discovered was that my son not only learned from video but also we could film future events like a hair cut and the anxiety basically disappeared.  So – I used video modeling for years to teach and to familiarize my son with situations.  Seeing a man getting his hair cut up close and being able to watch it over and over seemed to do the trick.  We had been cutting his hair at home, in the bath tub, on the swing – you name it we had tried it!
PeteKijek Actually, I have had a similar experience with my autistic son. His main problem was not sitting still in the barbers chair, and he constantly looks round to see what the barber is doing! As you’ve mentioned, the TV nearby is a great distraction for him, (he’s a bit too big and too old for a car chair now 😉 ) but he also enjoys looking in the mirror at what the person is doing. I think he never quite understood how what was happening in the mirror was what was happening to the back of his head!


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Suzie Goes to a Funeral – a new book for autistic children to help with attending a funeral.


Suzie goes to a funeral

Suzie goes to a funeral

How do you explain a funeral to an autistic child?

So far John, with ASD, has been to two funerals.  Both interestingly in foreign countries.  One was prior to his diagnosis and our issues were more to do with jet lag than autism.  The second was more problematic but happily the day went well.  The day after on the other hand……………

In today’s blog Charlotte Olson introduces us to another in her series of books which aim to help parents of children on the autistic spectrum deal with specific events.  In this case it is Suzie’s grandmothers funeral.

Olson writes “Join Suzie as she goes to Grandma’s funeral and says goodbye.

A simple story that can help a child who may be feeling anxious about going to a funeral.

A story that can help by explaining to a child what they might experience on this sad day.”

You can find out more about the book her http://www.suziebooks.co.uk/funeral.htm.

If you have any tips for taking autistic children to a funeral or can mention any possible pitfalls please use the comments box below to share your story!

Many thanks in advance!


12 Comments Posted on Autism, Patient Talk

Autism and Challenging Behaviour Part 3– Biting and Scratching at School – With updated comments

ResourceBase for Autistic Children

ResourceBase for Autistic Children

As regular readers will know our son, who has classic autism, attends a ResourseBase for autistic children based in a mainstream school.  You can read more about the concept and how it works here https://patienttalk.org/?p=1614.  (As I mentioned I’m really impressed with the quality of support he gets from the school.  Indeed he has just returned and is literally asleep from all the stuff he does during the week.  With a ResourceBase it seems not a moment is wasted).

In fact the ResourceBase played a major role in helping to solve at bit of a challenge which came our way a few weeks ago. I became aware of the problem when   I received a call from Tracey, the teacher in charge of the unit.  Tracey explained to me that there had been a problem at the lunchtime play break and our son, John,  had both bitten and scratched another student..  He had been surrounded by a group of children and rather than joining in with their play, as they wanted, he had become overwhelmed by the experience which made him angry. So he lost his temper and attacked another pupil.

Obviously the other student was very upset and, of course, did not appreciate why John had reacted like this when they only wanted to be friendly.

Tracey spoke with John, privately, afterwards to find out the cause and see how she could help. While they decided not to punish him they did decide that he should not attend his mainstream class that afternoon.

Unfortunately there was a similar but milder incident the next day.  So a tactic to prevent this occurring again had to be found.

Tracey asked me to drop into school one afternoon a couple of days later to discuss how we all should deal with the situation.

The solution she had hit upon, I have to say, was a bit of inspired genius.

After each morning and afternoon session John would go to her room.   If he had not bitten, scratched or fought with another child then he would be able to put another bit on Tom.

So who’s Tom?

Tom is a glove puppet (in this case a monster).  Different parts of his body can be added one by one to create a complete puppet by the end of each week.

If all has gone well John will be able to play with Tom at the very end of his school week as a reward for his good behaviour.

Does this kind of reward work?  Well in John’s case it seems to.  In the first week another child bit him.  Instead of lashing out he curled up into a ball and refused to do anything as he did not wish to lose his time with Tom even if he was angry,

Obviously we are still in very early days but, for us, this seems to be a strategy that works.

So what about you?  How have you dealt with biting and scratching by an autistic child?  It would be great if you could share your story in the comments box below.  You might like to consider some of the following questions when putting together your answers:-

1)      How often does your child bite or scratch in school?  Are they violent in other ways?

2)      What triggers these kinds of behaviours?

3)      What techniques have you used to discourage them from violence in school?  How effective were they?

4)      What do you think about using a reward system like Tom the monster puppet?

I really look forward to reading your responses

 

Thanks very much in advance.

 

SamanthaMedrano My sons 3 and he only bites me his mother or family or himself. He gets too overwhelmed while in public he also has sensory issues. We have a chew tube with him at all times it can also go arround his neck. But no issues in school yet.
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ThomasRaphaelHyle I’m going to guess 8 years old
ThomasRaphaelHyle I have only ever been violent when provoked. I am always highly suspicious of stories about other autistics being violent. But this story particularly smells; “playing” is often what bullies try to claim, and I remember as a young child being surrounded (repeatedly) by other children in school and they were not playing “with” me, but “at” me, if you will. I was not a playmate; I was the object of play. The teacher told me nothing was wrong and to go back to playing with the other children. Eventually I did snatch one of them from the mocking, dancing, throwing, hitting ring, and beat his head off the floor repeatedly.
ThomasRaphaelHyle being surrounded does not sound friendly to me. That story has a smell about it.
smckee0707 My daughter is 8 she is autisic as well she is known to pinch hit throw chairs whatever she can when she is upset bc like other kids with autism explaining whats upsetting her isnt gonna happen she is in special ed all day besides for like P.E. ex and 20 mins a day in regular class which seems to be a little to much stimulating for her bc thats when she gets upset the reason i posted on this is bc right b4 her 8th birthday is when she was diagnosed with pervasive developmental disorder/autism and the school has done nothing i took up her diagnosis from the doctor to the school when she was enrolled i made sure i put all that information on her paperwork and at school she was put in detention for pinching a kid who she asked 3 times to move the little girl was leaning over her desk while she was trying to work my daughter couldn’t concentrate at all and she got upset. ..now i am a believer she needs to be talked to about her actions bc violence is never the answer but after speaking with the special ed department the lady told me my daughter did NOT HAVE AUTISM so i politely said are u aware u are speaking with her mother bc she does have autism i do have papers from her doctor and from the social security office saying she is disabled she said oh ok well bring in her papers to me tomorrow and we will work on this so.!!! Question am i wrong for being upset ive done everything by making the school aware of her autism but bc she doesnt LOOK like she has autism its been over looked so i am so upset and a littler nervous to have the meeting with the school tomorrow bc its a very big deal.my child has had such a hard time learning she is suppose to be in 3 rd grade and is only doing low kindergarten average work and it breaks my heart bc i did all the early intervention started at 2 and was told from 2 until almost 8 idk whats wrong with your kid and things like this are still being ignored so my plan i think is to get a good nights rest and go in there as positive as possible but this so un called for and i hate this keeps happening to my daughter she has such good potential. .
homeschoolmommy We had problems with our daughter getting over stimulated at school.  She didn’t get aggressive but would start crying and withdraw.  They disciplined her by making her sit out at recess and lunch, as many as 3 times a day for “pouting and being uncooperative”.  After addressing this issue with them and being told they could not have special rules for any student, I pulled our daughter out and home schooled her.  It is working out beautifully.  I am able to control her environment better and help guide her through difficult circumstances.
go botherdaddy PaulineEstherHunt  PLeas do not take offense.  I am a 34 yr old woman, with a 34 yr old husband who has aspergers and an 8 yr old son with autism.  The problem is the rules and regulation of mainstream schooling.  Alot of parents believe it will benefit children.  My husband was in mainstream school because his family denied and his his condition.  I have a friend who’s son is the around the same age as yours which she is going to start home schooling.  My friend’s son has just started middle school.  The assistance for special needs is limited. In a school built around autism the accommodations are endless.  As you described, your son liking to work on his own….the overwhelming stimulation is probably what is getting him going.  Your son has even admitted he functions better with the tasks at hand and behavior without it.  A special school would allow him to be involved in class but remove him for personal time during his studies if need be.  There are classes that only consist of 6 students per grade.  If he needs a “time out” from the stress (which my husband still needs after all these years.  he sits in bathroom and rocks while he cries) they will give it to him as need be.  Everything is arranged more personally to fit your son than main stream schools such as courses, time invested in them extra help etc.  Alot of people dont like the stereo of an “autistic” school.  I didnt either.  I believed it would have made my son “worse”.  I was never more wrong.  He’s happy and thriving.  I said to myself, “He’s happy and it works for him…”  One big problem my friend is having here (Upstate NY) is that because she said her son didnt need the extra help his whole life, not that everything has caught up with him and he’s struggling, the school board is denying her the help she needs because she has had him go this long without it.  It costs the school board 4x as much to supply the full assistance for special needs, and by putting him mainstream for so long it give the board the right to save their money for someone else by arguing and defending that the 8 years he coasted without proves he can get by.  Best of luck.  And Hope and wish nothing but the best for you and your son.
go botherdaddy FInd the underlining message.  What causes the repeat offense.  The action of biting etc is to get a quick and clear message instantly across to someone.  For example.  Like clockwork, my husband will try to lay with our 8 yr old autistic son on the couch.  My husband will put Isaiah (our son) on the inside of the couch and after a moment Isaiah will bite him in the shoulder.  Its Isaiah’s reminder to my husband “Dont confine me!”  Now, knowing this to decrease the negative behavior, everything thing we do, we ask ourselves , “Will this confine and upset ISaiah?”  If the answer is yes, we find a way around it.  My son pinched, dug, bit, kicked since he was 2 yrs old chronically.  Breaking it down, using this approach, on average twice a month.
PaulineEstherHunt Hi I have a 12 year old boy with asd who is currently in mainstream school has just been given his fourth internal exsclusion for violent behaviour towards another pupil. School policy is to exclude however for my son he likes to be on his own and to be in a room all day on his own with the set work is heaven. He has openly told me he likes it as there is no noise or rushing around and noone bothering him.
The school do not except my query as to an alternative punishment for this reason and simply continue to say he will be punished as per the policy set.
In the long run this is not helping he is lashing out more and more and he knows with very little effort he can get one or two days on his own.
We are still searching for support and advice to help and or ease the situation!
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LisaGillen I love this idea, and i am going to try it!  However I foresee my 3 year old student as having fits every time he is allowed to put another bit on, and still not play with it until the end of the week.  My student loves to play with those bead toys that you can move along skinny metal tubes.  I thought maybe I could allow him to move some, and let him know if he doesnt hit all week we can get it down (or some other distraction toy) on Friday and he will get to play with it