Any Advise?

Wendy - posted on 05/20/2009 ( 12 moms have responded )

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Hello I am new to the group and new to Aspergers actually. My son just turned 3 and about 6 months ago was diagnosed with sensory processing disorder. After a check up with his ped., the doctor said he actually sounds like he might have Asp. He walks and runs on his toes flaps his hands when he is upset or excited is very obsessed with lines (he lines all of his toys up, loves trains because he can move them and maintain a line etc) He does have problem with moving from one activity to another and we have had the same DVD on repeat for months now. My family is very frustrating because no one sees anything wrong. But as his mother I know in my heart something is "off". He was very delayed in speech but communicates very well now. He is a very picky eater and eats the same thing over and over for weeks at a time. I was unable to have him re-evaluated until the middle of March, so I guess my question is does this seem like Asperger's to any of you? And if so, what if anything can you tell me is in our future and is there anything I can do now to make his life a little easier. There is much more I could probably type but as he is my first child I am not sure what might or might not be relavent so please ask if you have any questions! Thanks in advance!

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Monica - posted on 06/12/2009

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My Aspie child will be 19 in a few days. So, I am past your stage. But, there are a few things that have stuck with me over the years.I call his episodes, "The Good, the Bad, and the Ugly".

The Ugly - The worst meltdown he had was at a shoe store. I had gone to an exclusive children's shoe store to find some "special" shoes for starting school. He refused to even try on a single pair. Because this was a nice store, I was embarrassed at his behavior, and tried to get him to just be quiet. Unfortunately, because I cared more about my feelings than his, I was not hearing what he was saying - I just wanted him to be quiet and do what I wanted. Eventually, this became a full-blown fit complete with him lying down in the floor kicking and screaming. Lesson to be learned - Accept your son for who he is and don't try to force your's or anyone else's expectations on him. As he grows, remember that he might delayed somewhat from children his own age. So, don't compare him to other children in his playgroup, or in the neighborhood.

The Bad - School was a struggle for him in every way,but academic. He is brilliant, so he made good grades. But, socially, he was awkward. He also has sensory sensitivities, so the sound of the bell ringing for class changes would paralyze him. Also, he did not do well transiitioning from one activity to the next. So, this made everything from "center time", when he was younger, to changing classes when he was older very difficult. Once he settled into a routine, he would be fine,but if there was the slightest change, that would set him off. Lessons learned here - Talk with the teachers after they have had a few weeks with your son. If you try to have this discussion before the school term begins, the assume that you are an "over-protective" parent. Let them see who he is before you have a talk about coping strategies. If possible look into alternative schooling like Montessori. The traditional model of education that does not take your son's differences into account will be trying for both of you. Eventually, I began homeschooling, because the school environment was not a positive one for him. Not everyone can do this. You and your husband need to look at the educational opportunities available and pick the one that best suits your family as a whole. For example, if there is a phenomenal school for him, but it's a two hour commute, that might have a negative impact on the rest of the family.

The Good - Actually, it's better than good, it's awesome. Out of all four of my children, he is the one with the most tender heart and gentle spirit. I always know exactly where I stand with him, because he will tell me exactly how he feels. Out of the blue, he will come up to me and tell me that he loves me. This is pretty awesome.

It was difficult for him growing up with this tender spirit, because society doesn't encourage that in boys. His father and I encouraged him in extra-curricular activities such as drama and music, rather than athletics, because his motor skills are delayed.

We also encouraged him to express himself on paper, because he is extremely creative and has lots of great ideas floating around in his head. Since legible handwriting was hard for him when he was younger, we also started him keyboarding at a young age, so that he could express himself fully, as opposed to just writing brief on word answers, because it was easier. Today, he is fluent on the keyboard as well as in his handwriting. But, he prefers the keyboard, because it's much easier for him to edit.

When he would get upset or frustrated, I would have him write out was he was feelings. It really helped him deal with what sometimes would be an overwhelming flood of emotions. Since your son is at the age where children start having a vocabulary where they can put labels on their feelings, talk to him about the different feelings/emotions. When watching a DVD, or reading a book with him, stop what you are doing & talk to him about the different characters and examine how they are feeling. If your son is able to articulate what he is feeling, it will help you to address his needs when he is melting down. Learning how to deal with an AS child's emotions is very important, because they feel more quickly and more deeply than other children. With my non-AS children, dealing with their moods is like drinking water from a hose, with my AS son, it's like trying to drink from a fire hydrant. The water is still there, but there is more of it & it comes at you a lot faster!

Sorry to ramble on, but I hope this helps in some fashion. Enjoy your time with your son, because he will grow up quickly and keep in mind what one of son's teachers once told me, "Normal is just a setting on a dryer."

Helga - posted on 05/24/2009

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I have a 11 year old Aspie son, and there are many similarities to your son. But most of all your feeling of something being off.

When it comes to moving from one activity to another i've gotten used to always telling him in advance. I'll tell him 5 min before, then again after a couple of minutes again and then when it's time to go. that usually does the trick for us.



I've also adapted to being very consecvent about my reactions. it was very hard at first but it's alot easier now. it'll pay off in the long run i think



about food: i made him try everything for five years, and now it's no longer a big problem. good luck.



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Wendy - posted on 06/15/2009

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All of you are amazing women and mothers, it is comforting to me as a mom that is new to all of this to see you all struggle with some of the same things and have found solutions (sometimes anyway :) ) It helps me to know that other moms get frustrated, my son can not control himself yet and this frustrates me and I fell bad for being frustrated b/c he can't help but it helps to know that everyone feels this way sometimes so I can't be that bad of a mom!!! Thanks!

Monica - posted on 06/15/2009

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Quoting Tammie:

Wow Monica, My son is 12 and you described him to a T with the "melt downs". Do they ever out grow those? His melt downs are like a 2 year old in a 12 year old's body.Tammie,


Hi Tammie!



Well, he's not lying down on the floor kicking and screaming any more.  He has learned over time to control himself.  But, he can still have outbursts.  Different situations call for different measures.  



Sometimes, if we are in a public spot, I will try to draw him off to the side, ask him to speak in a low tone, and then I listen to him.  This is difficult for me, as I get impatient listening.  I want to jump on the first thing he says and "fix" the problem immediately.  Unfortunately, by my doing this, I just prolong it.  Usually, it's the last thing he says that is truly upsetting him, not the first.  If we are at home and he starts, I ask him to go to his room, and come back when he feels he can talk in a reasonable tone.  At school, when this would happen, the teachers would let him go on a walk for a few minutes.



Having him get out of the situation causing the meltdown and doing a physical activity like that has the same effect as listening to him go on and on about what is bothering him.  While walking, he has time to think about what is upsetting him, and can come back and talk reasonably about what set him off.  Listening to him fully is the hardest part for me, but I have learned that if I take the time to hear him out, it helps me out emotionally, because the meltdown is over that much quicker.



My least favorite place for the meltdowns to occur is in the car, because I am  trapped.   The best I have done in those situations is to ask him if we can talk about whatever is bothering him at a better time.  The worst I have done is telling him to be quiet, because I can't deal with him at the moment.



Sometimes though, a meltdown occurs due to physical reason rather than emotional.  These are much easier to address (and fix!).  If I know that he's getting tired or hungry, I take what he says with a HUGE grain of salt.  Then, I feed him, or send him to bed.  Either way, within a few minutes he has stopped melting down!



WIth your son being 12, that means puberty is starting to kick in, along with my favorite (extremely heavy sarcasm, here) hormone, testosterone.  I call it  "testosterone poisoning"!  My non-AS son is 13, and we have had anger issues with him,  because of nature, not AS.  It will be an exciting few years for you.  But, the meltdowns will happen less and less as he matures.   



Most of the meltdowns my son has now, are due to changes in his routine, rather than an inaability to express himself.  When I know that there is going to be a change, since he is older, we talk together before the change happens.  I DO NOT, UNDER ANY CIRCUMSTANCES, begin a discussion about a change that needs to happen by saying, "We need to change."  This will set my son off very quickly into "meltdown mode", and I get so caught up in dealing with that, that the discussion about the change is never smooth.  



Now, I come to him, and tell him I have a "problem" or a "situation" and is he willing to listen to me.  I start the discussion by explaining why things need to change.  Then, I ask his "advice" on how he thinks we should solve the "problem".  Most of the time, he will come up with a solution that is identical to the one I had planned to implement in the first place.  But, since it is his idea, and I am not "telling him what to do", he is morre than willing to go along with the change.  If his ideas do not go along with what I am planning to do, I usually will affirm what he has said by praising his idea.  Then, I will say something like, "I like your plan,but what do think of this way to solve the problem..."  This will usually bring about a positive response, rather than a negative one.



Tweens and teens have defimite ideas about everything.  By asking their opinion, we, as their parents, show that we respect them, and that we care what they think.  This is also a great opportunity to tell them what we believe and why we believe it.  



Tammie, just enjoy being with your son, and if possible spend some one-on-one time with him daily, just listening to him.  By your doing that, you are demonstrating without words, that you really care about your son.   Because of his lack of social awareness, my son takes everything anyone says at face value, and does not always "hear" what people mean.  So, my talking and sharing with him does not impact him the same way it does my other children.  But, when he physically sees me really listening to him and maybe asking a pertinent question or two, he knows that I really do love him.



 



 

Kathryn - posted on 06/15/2009

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He sounds similar to my daughter in the way that he toe walks, the flapping, the lining things up and the problems transitioning.



My daughter had additional things of an obsession with clocks and a desire to be a dog at that age :-)



My daughter did not have the picky eating, but was instead afraid of noises and people, but the Sensory issues will manifest in different ways with different kids. She was also very afraid of heights which I later found out was a part of the sensory issues called gravitational insecurity. This is one of the most pronounced things for my daughter still at 9.5.



Anyway at kindergarten age, they said my daughter had signs of Aspergers, but she was eventually diagnosed with having high functioning autism this year in 3rd grade.



For the sensory stuff, you could buy the book "The Out of Sync Child has Fun" by Kranowitz. It will give you alot of games that help with sensory issues.



Also, pragmatic speech, was a huge problem for my daughter. That is things like saying please and thank you, back and forth conversation, and asking for things she needs. Start insisting on your son not getting things unless he asks for them with proper pragmatic language, like Can I Please have some milk? You will be glad you did. You may need to prompt them with the right way to ask many times. Also many kids with Aspies do not understand sayings like "Penny for your thoughts?" They will not understand that you mean what are you thinking. Anytime you run across a saying, explain what it means to your son. They also may not understand body language and pointing, so it is good for you come right out and tell them what pointing means, and what the thumbs up sign means, and what winking means etc. Aspie kids can usually learn anything if told to them verbally. They just might not pick it up themselves.



Later on you may want to medicate your son. Many Aspergers and Autistic kids have low Serotonin levels and medications that increase brain serotonin levels liek serotonin reuptake inhibitors or L-Tryptophan (a supplement that is the precursor for Serotonin) can alleviate the symptoms, but I am not sure anyone ever medicates as early as 3 years old. Every kid is different though, so what works for one will not necessarily work for another.



When my daughter was younger, undiagnosed and I was without health insurance, I just bought a bunch of books on Aspergers and Autism to get ideas of what to do. Plus, I bought her a swing set and a trampoline. She was so afraid of the bathroom noises, that I had to have a party in the bathroom to get her over it:-)



Good luck.



KC

KC

Tammie - posted on 06/14/2009

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Wow Monica, My son is 12 and you described him to a T with the "melt downs". Do they ever out grow those? His melt downs are like a 2 year old in a 12 year old's body.

Wendy - posted on 06/13/2009

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Thanks so much Monica!! You have no idea how much this helps and all though our children are 16 years apart...you described my son perfectly!!! Thanks again!

Wendy - posted on 06/05/2009

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Thanks everyone!! All of you have been a big help! I am curious too see what happens with him and I glad that we are getting an early start!

Tammie - posted on 05/26/2009

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The flapping his hands sounds like a form of autism/aspergers. I have a 12 year old with aspergers. My other child is 9 and he is a picky eater, has sensory disorder with not liking certain textures of food and must have tagless clothes and no jeans. He has been diagnosed with General Anxiety Disorder. They say OCD is a symptom of aspergers. My son with aspergers does not like change. He likes a steady routine and has a "meltdown" when he has a substitute teacher. He wasn't diagnosed until last year. I also have a nephew with aspergers and the only quirk he has is germs and washing his hands constantly. They say no two children with aspergers are really alike though. There is still a broad spectrum of symptoms. I personally believe that ANY excited child can flap there hands in excitement. My autistic nephew was diagnosed at age three and has been in preschool for several years but he is starting kindergarden this next school year. He was diagnosed by a neurologist and my son was diagnosed by a child psychiatrist. Hope this helps a bit.

Michelle - posted on 05/25/2009

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haha...we must be on at the same time...! first of all, i live in australia so its more than likely different for you...i absolutely found that early intervention made a huge difference. for example, to begin with nate (my son) started attending playgroups with other aspie kids....was a bit of a crapfight sometimes but its important that they learn how to start interacting with others. also, they did alot of sensory stuff with him, like putting him in a big hammock thing that was attached to the ceiling and gently swinging him...helped with his proprioception (you will probably become familiar with that...). basically nate has a few sensory issues though not as many as he used to...he would never get on a trampoline because he didn't like the sensation of bouncing around which is why all the sensory things they started doing with him were really helpful, it gave him a better sense of where his limbs were and what they were doing in relation to the rest of his body. he also attended 'normal' child care 2 times a week, although we were lucky in that the staff who dealt with nate there often attended workshops and were informed enough about aspergers to be able to deal with nate when he had had enough of it all. he started school this year....hmmm, that is a whole other story! but yes, early intervention is the way to go, as well as being beneficial for him, it also helped us alot in understanding what was a reasonable expectation of him and what we just had to forget about! the food thing, we also have issues with that from time to time, not as much as we used to but even now, there are things that he will put to his mouth, smell and just start gagging....he used to do it alot with things that had lots of wheat, flour and stuff so we had him tested for gluten intolerance...nothing came up but still, we don't push the issue if he has really strong reactions to anything that we give him. its hard to know sometimes if its just the smell, the texture or the flavour of whatever it is...at the end of the day, doesn't really matter. on the movie thing....nate is a big big fan of science fiction (star wars, that sort of stuff....!). another thing thats been fantastic with his intervention stuff is they run a program called engine running...basically it teaches the kids to be able to recognise what sorts of things make their engines (meaning their moods, basically) to run too fast, too slow or just right....your little one may be a bit too young for that just yet but it has been invaluable with nate as he picked up on it really quickly and can tell me when he needs to go and get his engine just right again. he sits and looks at catalogues...you know, like junk mail...i don't know why but it works and is better than him losing the plot! anyway, is brekky time here so must go....hope this has been some help and feel free to add me to your circle if you like....take it easy, hey!

Wendy - posted on 05/25/2009

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Quoting Michelle:

right, i'll try again here...had a big long answer written out yesterday and something happened and i lost the whole lot....lol! i have two with aspergers, one a daughter and the other a son. our son was diagnosed not long after he turned two...which was great as it meant we were able to get into early intervention (something that didn't happen til my daughter was 7 and what a difference knowing early makes). your boy sounds pretty similiar in alot of things to what ours did at that age (now he is 5). the reason no one in your family thinks anything is wrong is because they don't want to....its easier for other people to tell themselves that thats just the way that particular child is....but as you know, for us mums when there is something not right...we just know and no amount of advice will change that! the dvd thing made me laugh...my boy is totally obsessed with movies...always has been and probably always will. most people think he watches far too much for his age...well, maybe so but its his thing....when he has had enough he will find other stuff to do. as for the future...the best i can say is just be flexible and patient ( though it sounds like you have that down pat). just follow his signals...they are there and over time you will learn to read them and know when he has too much going on around him and meltdown is imminent! start trying to find out exactly what kind of sensory things are ones that he likes...as he gets older you will need to know this because it may be something you can use to keep him on an even keel. most of all....don't listen to negative negative negative stuff....my son is an extremely loving and very affectionate boy....adores his mummy and one of the hardest things for me is that other people don't often see that about him....but hey, i figure if they can't make him feel as safe and loved as we do, then they are the ones missing out....there are many positive things ahead for you, just be open to that!



Thanks so much!! Yes we are often told we let him watch to much tv, but just like you it is his thing and we don't mess with it! I am curious we had my son evaluated by early intervention to begin with for a speech delay (which he overcame VERY quickly) they were the ones that originally said he had "sensory issues" but he was not delayed enough for them to help him. So that is when I took it upon myself to go to an OT for an eval and she diagnosed him as simply having SPD. My pediatrician was the one that said he needed to be re-eval. We now pay for food groups through OT once a week and OT once a week and she is now suggesting other things but our course of action isn't making a noticable difference (thus the doc says he needs to be re-eval...thinks there is more to it) If my son does have Asperger will early intervention help then? Or what kinds of programs and therapies are your children in? Thanks

Michelle - posted on 05/25/2009

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right, i'll try again here...had a big long answer written out yesterday and something happened and i lost the whole lot....lol! i have two with aspergers, one a daughter and the other a son. our son was diagnosed not long after he turned two...which was great as it meant we were able to get into early intervention (something that didn't happen til my daughter was 7 and what a difference knowing early makes). your boy sounds pretty similiar in alot of things to what ours did at that age (now he is 5). the reason no one in your family thinks anything is wrong is because they don't want to....its easier for other people to tell themselves that thats just the way that particular child is....but as you know, for us mums when there is something not right...we just know and no amount of advice will change that! the dvd thing made me laugh...my boy is totally obsessed with movies...always has been and probably always will. most people think he watches far too much for his age...well, maybe so but its his thing....when he has had enough he will find other stuff to do. as for the future...the best i can say is just be flexible and patient ( though it sounds like you have that down pat). just follow his signals...they are there and over time you will learn to read them and know when he has too much going on around him and meltdown is imminent! start trying to find out exactly what kind of sensory things are ones that he likes...as he gets older you will need to know this because it may be something you can use to keep him on an even keel. most of all....don't listen to negative negative negative stuff....my son is an extremely loving and very affectionate boy....adores his mummy and one of the hardest things for me is that other people don't often see that about him....but hey, i figure if they can't make him feel as safe and loved as we do, then they are the ones missing out....there are many positive things ahead for you, just be open to that!

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