Mommy to an Aspie boy!

[aspiemommy]

Hi everyone!

I am new here, I am a mommy to an amazing little boy who will be 3 next month. He has yet to have a diagnosis to confirm it, but he his suspected to have the asperger syndrome. He has been showing a lot of signs for a few months and it is getting more obvious that he could be an aspie.

We are currently waiting to be seen by a specialist, but I fear it will take ages to actually see one (probably up to a year) so I am thinking of going private.

Any of you here have kids with aspie? How do you cope, how do you deal with your relatives and friends ???

And I wanna ask some of you that have asperger syndrome, how can I make my boy's life easier, more enjoyable, more fun ?

Thanks a lot !! xxx

 

[IContainMultitudes]

Hi. Welcome to Aspies Central! I'm still a relatively "new" Aspie (I got diagnosed just last year before turning 31), so my knowledge about Asperger's is still somewhat limited, but there other people here who might be able to give you some advice on raising your son.

 

[142857]

My son is turning 6 this month, and an undiagnosed aspie. I think that the important thing is not to stress out if he wants to walk in circles around the coffee table for half an hour, or if he just keeps talking and talking seemingly for the sake of talking. I think socialisation is important at your son's age, he needs to interact with adults and other children under your supervision.

Also he will likely have some intense interests and you may need to be tolerant of those. Don't worry, you won't need to be a mind-reader to work out what his interests are.

He will likely also bond very closely to his favourite toys or objects. You need to be aware of this and don't make a big deal out of it.

He may also be very absent minded - leaving things behind. Or take longer to learn to do things like feed himself, go to the toilet by himself, dress himself, and so on. Be patient. He may have trouble telling when you are being serious, when you are angry, or when you are just kidding around.

What appears to be defiant behaviour may simply be executive dysfunction or his tendency to shut the world out when he is focused on something he finds interesting (hyperfocus). He may have meltdowns when you try to tear him away from his favourite activities, or his favourite TV shows (my son's favourite shows include Mythbusters and Air Crash Investigation and Road Rampage). Be tolerant.

He is also very likely to have unusual sleep patterns, and it may be difficult to wake him in the morning or to get him to go to sleep at night.

Anyway, this is just based on my experiences and your son may be very different, so don't worry if he varies from what I have mentioned above, as we are all individuals.

 

[BruceCM]

And, speaking as an Aspie, rather than a parent, I'd have really liked much better explanations of social 'rules', growing up. Hopefully, you'll know a lot more about AS than my parents could find out & you know your son has it, whereas they kept being told I didn't have it. There's bound to be parents here who can give you more guidance & best wishes with it all.

 

[aspiemommy]

Thanks so much for taking the time to reply! It is very much appreciated. 142857, thanks it's nice to know I am not alone.

How did your relatives and friends react to your son being an aspie? Most of my husband's family has no clue what asperger is and they are very old fashioned so we are quite scared of what their reactions are going to be. My family on the other hand has been extremely supportive (my mom having worked with autistic children, she is amazing)

Have you found that showing your son pictures of eating or going in the car easier for him to understand what to expect?
Thanks xxx

 

[ajoycew]

My daughter is 9 and about 3 months ago was diagnosed with Asperger's, ADHD and ODD. I've known something was going on with her since she was 3 years old, but I had no idea what. I was in a very emotionally abusive marriage. My ex husband was really hard on her and called her stupid every day. A LOT of our arguements was me taking up for her and trying to get him to leave her alone. Here are some of the things we've went through with her...
When she was 3 I put her in headstart. I went with her every day for the first year because she would throw a fit if I snuck outside. But she actually loved headstart. She loved learning. I learned a LOT about her that year. She didn't talk much. Not that she couldn't, she just chose not to. It was like she was uninterested in speaking to people. They suggested speach therapy. I agreed thinking it would help. But when they'd take her she would get under the table "literally" and not speak to anyone. So we decided that at the headstart center she would speak a little bit with a few kids and me so we took her out of speach. They had family lunches for holidays and invited the children's immediate family and grandparents to come and eat with the kids. We learned really fast that no one new could sit anywhere at our table. Marie would run to the furthest corner and throw a fit, refuse to come near the table at all and not eat a bite. When they had these lunches or whenever a parent of a child at our table just stopped by for lunch we had to rearrange the children so that no one new was at Marie's table. She didn't mind new kids beside her but absolutely no one else and not the lead teacher. She didn't want to sit beside her either. She loved the bus driver. Besides myself, the bus driver was her best headstart friend. She always refused to do any of the screenings that they do (vision, hearing, and such). I tried to talk her into it every time but she would not cooperate at all.
I decided to let her to back to the same headstart when she was 4 instead of changing her to pre-K because she doesn't do well with changes. But I was working that year so I couldn't be with her every day. After about a month (and I don't know why they waited that long to tell me) they said Marie wouldn't eat a bite, take a drink of anything or use the bathroom all day long. She even had a few accidents on herself because she tried to hold her pee. I went in one day to pick her up and she was in the bathroom screaming like someone was killing her. I ran to the bathroom to find the bus driver trying to talk Marie into letting her help get her clothes changed because she peed on herself and was soaked. Marie refused to let her do anything to help and Marie really liked this woman. But she didn't want to be touched. I went in the bathroom and calmed her down and changed her. Then she was fine and back to normal.
When I'd talk to my ex husband about how she did in school he'd just say "well, what do you expect, you know how Marie is." When I tried to talk to his mom about Marie she'd tell me, "She's just like her daddy. You can't do nothing with her." Finally in July of 2009 I left that situation and me and my girls have lived on our own. Marie has changed so much. She is now 9. I got her into counceling after leaving her daddy and that's how we got the diagnosis. Since I've researched Asperger's and understand more about Marie, our relationship has gotten much better. I'm trying to help her understand things she struggles with.
Some of the other things I've noticed with her...
When she was 4 she started picking the skin off her hands and feet. She told me that she didn't like how her skin felt and it didn't hurt to peel it off. But it did hurt her when she was in the tub and at times she didn't want to bathe because of the sores. Her daddy would tell her that she was a "dumbass" for doing that to herself. Now she is starting to bit her lip and tongue until they bleed. She says it don't hurt either so I tried to explain the risk of infections to her. She said she understands why I don't want her to do it. In another thread I asked about this and someone suggested trying to get her to replace that behavior (stim) with something less harmful so I'm going to try that and hope it helps.
Marie hoardes stuff in certain places in our home. She has a box in the kitchen that is beside her kitchen chair (her chair and no one else sits in it while she's home). In this box is several random items. There is toys, there is papers, stuff she's done at school, things she's drawn, empty pop bottles, other trash. I threw away a cereal box she had in it two days ago and she hasn't said anything about it yet. But usually if something isn't there she asks me what I did with it or she throws a fit on her sisters demanding the item be returned to her NOW. She aslo fills a cabinet in the living room. It's a small cabinet in the entertainment center. She was keeping this stuff pilled up on the back of an old chair I had that she claimed as hers. I had to get rid of the chair because she had pulled the fabric off it and plucked the stuffing out and threw it in the floor all the time. So now it's hidden away in the cabinet. That is fine with me because it's not in sight and she's comfortable with it there. Her bed was absolutely full of junk up until about a month ago. I talked her into cleaning her bed out. I had to give her a few specific reasons why I needed her to de-clutter her bed. Making it more comfortable for her wasn't good enough for her. I explained that if something awful was to happen in the middle of the night, like a fire, and I had to try to get her out of bed, I want to know that I can find her and not have to dig for her. I explained how that would waste time and endanger our lives. She understood that and cleaned it out. There is still a few items in the bed. She has shoe boxes along the wall filled with stuff. I can live with that. At least there is not several pairs of shoes, dirty clothes, papers gallore, toys, ropes (she uses ropes as puppy tails, I'll explain this next), and a lot of trash and hidden candy.
She is fascinated by dogs and since the twilight movies she has leaned more toward wolves. She ties ropes around her waist or sticks them into the back of her pants or shorts as tails and runs around on all fours, and I don't mean her knees. She can run very fast on her hands and FEET without hitting anything. She hasn't done it much this winter so I'm hopeing when spring comes and she's out in the yard playing, hopefully she don't get back into it big. She did this almost all the time for years. She told me she wishes she was born a dog and she's serious about it. I asked her why and pointed out her grandfather's fox hounds that are chained to a box out in the weather and how he treats them and they have to depend on him to bring them food...you know, I tried to point out the bad points about being a dog. She said she didn't care. She still wanted to be one. I still don't get that one. When she was 3 she started crawling around like a dog on her knees. This was when she would wear blue jeans and she's tear the knees out of every pair I got her.
But when she was 4 and a half she refused to wear blue jeans anymore. She said she didn't like how they felt and I couldn't get a pair on her. She also don't like clothes that have any kind of stitching that you can feel on the inside. If there is something printed on the front of a shirt that you can barely feel on the inside, she'll take it off immediately. I have had to help her get stuff off because sometimes she gets so upset she really can't get it off. One morning she couldn't find her usual jacket for school. I got her another one. If felt very close to the same as the other to me. She put it one, wore it for about 5 seconds and then started screaming "Get it off me! Get it off me!" She was throwing her arms and trying to grab at the jacket and I had to help her get it off. Marie dresses in old clothes all the time. The more worn the better. She'll only wear pants that are loose. For shirts...only loose t-shirts. My seven year old will wear anything and loves to dress up. But not Marie. She says she don't care what people think of her.
There is a lot more I could say but I think I've made this post long enough, lol. I'm sorry for that. I just wanted to give you some examples of my daughter. I love her so much and I want to help her in any way that I can. I have to go and get them off the bus now. Good luck in getting your diagnosis. Learning is power in this situation. You have to be patient and pay attention to what your son is comfortable with and not and not make him feel like something is wrong with him. I hope everything works out and you get to get in to see someone soon.

 

[142857]

Thanks so much for taking the time to reply! It is very much appreciated. 142857, thanks it's nice to know I am not alone.

How did your relatives and friends react to your son being an aspie? Most of my husband's family has no clue what asperger is and they are very old fashioned so we are quite scared of what their reactions are going to be. My family on the other hand has been extremely supportive (my mom having worked with autistic children, she is amazing)

Have you found that showing your son pictures of eating or going in the car easier for him to understand what to expect?
Thanks xxx

We were living in Jakarta (Indonesia) when I figured out that my son has aspergers syndrome, and there really isn't much awareness there. Most people are okay when I explain it, they can see that it isn't a huge deal for him and he is a happy and well adjusted kid. One of my brothers comes and stays with us regularly, he is an aspie as well and my son is actually a lot like he was at that age. My other brother thinks that our whole family is poisoned with arsenic, cadmium, mercury, organophosphates, and a bunch of other stuff. So he doesn't really accept that there is autism/aspergers running in our family. My wife's family think he is wonderful and I'm sure it would make no difference if I did find a way to explain to them what aspergers syndrome is. My mother-in-law must have at least 20 grandchildren and great-grandchildren and our son is by far her favourite.

I've never tried showing my son pictures of eating or riding in the car. The problem is that he won't really apply himself to anything that he doesn't find very interesting. So he is miles ahead of his classmates when it comes to IT/computers, but he struggles in other areas.

 

[IContainMultitudes]

How did your relatives and friends react to your son being an aspie? Most of my husband's family has no clue what asperger is and they are very old fashioned so we are quite scared of what their reactions are going to be. My family on the other hand has been extremely supportive (my mom having worked with autistic children, she is amazing)

I'm only "out" to a few people I know IRL as an aspie right now, and I think I'd like to keep it that way for the time being. My parents and immediate family are ok with it, but I have similarly "old-fashioned" members of my extended family who I think probably wouldn't react favorably if I told them about it (one of them is fond of saying that people with mental health issues just need to "get a grip"). I have a feeling that some of them would probably say I was just making excuses for not leading a more conventionally "successful" life.

The psychiatrist who gave me a semi-official AS diagnosis (she told me that going through the battery of tests that people usually go through to get an AS diagnosis probably wouldn't be very helpful at this stage of my life) told me that smaller, more conservative communities like the place where I currently live generally aren't ideal places for aspies to live. At first, that seemed like a somewhat strange idea, but after giving it some thought, it seems like places that are more conservative (with a small "c") about social conventions and behavior generally aren't going to be places where aspies will fit in easily.

 

[aspiemommy]

Ajoycew Thanks for giving out so many examples and letting me know so much information. This helps, and hopefully will help a lot throughout my son's childhood. So far we haven't really had to deal with ''bigger challenges'' other than the violent meltdowns and tantrums and dealing with strangers. He really dislike when someone he doesn't know looks at him, when they talk to him it's even worse. He will scream murder and starts hitting himself or hitting me. It has become very hard to take him anywhere because of his looks, people tend to talk to him... Then he goes off... and sometimes he won't stop screaming until we are back into the car, me whispering to him and hugging him.

Icontainmultitudes: See my in laws are like that, very conservative. They have already started blaming me for his social difficulties, saying I raised him the wrong way. I feel like there is going to be a lot of friction between us.

My in laws are coming to visit in April and are staying with us. I am dreading that time because my son doesn't deal well with visitors unless it's people he is familiar with and see on a regular basis. Sometimes he will like a stranger, but it's very rare. He tends to like teenagers a lot (like my younger brother)

We are seeing a doctor next week, I finally managed to get an appointment elsewhere and I am very anxious to hear what she has to say and about getting referred to a psychiatrist.

Thanks again so much everyone! Finally I feel like all this weight is lifting off my shoulders because I can speak about it with people that UNDERSTAND! Thankyou xxxx

 

[Spinning Compass]

Let us know how the appointment went.

I am wondering if he might be reacting to voice quality (tone, pitch)? Or is it the fact that someone is a stranger that he fnds overwhelming? I used to freak out in public restrooms because the roar of the flushing toilets was too much for my ears. Also he may be frustrated because he can't communicate; something is upsetting him but he doesn't know any other way of letting you know.

There is a big danger with meltdowns, and that is that the autistic child learns that that is a very effective means of getting his or her way. I know there has been a lot of garbage written about autistic children, how they can't lie, how they are pretty close to sainthood. That's not so. What we have trouble with is the concept of hypocrisy.

I am going to say something that a lot of people may not like. Those of us on the spectrum can be pretty self-centered at times. Many of us DO live in our own little worlds; we like it that way; and we will fight tooth and nail to keep things that way. And if we find that we can intimidate others through threat of a meltdown, we can and will use that weapon. So it is very important that while you are sensitive to the causes of your child's meltdowns, and do what you can to lessen then, that you not allow him or her to run your household. A very good (and tragic) novel dealing with this is Jodi Picoult's "House Rules" which deals with an autistic teen's obsession with murder cases and his mother's failure to set clear boundaries. All through the book she caters to him and expects others to do so because otherwise he will go into a meltdown. Unfortunately his obsession leads him into very serious trouble with the law. At the end of the book you get the feeling that this family's nightmare is only just beginning.

I look at autism as being a kind of addiction. We are addicted to our obsessions, our little whims, our little quirks. And, if any one has ever dealt with addictions, they are very hard to break. Many times the addict doesn't want to break them and will do almost anything to keep the addiction going. With that in mind, I'd be very careful about electronic media, TV, computer games, anything like that that has the potential to be addicting and isolating. It is even easier than it was when I was a child to escape and live entirely in one's own world. I know quite a bit about that from the inside. In some cases it kept me out of serious trouble, in other cases it retarded my social development.

What you want to do is expose your child to the wider world as much as possible and give him opportunities. Right now he is only three, but when he gets older and expresses interest in things, encourage that. Unfortunately in my family the mantra was always, "We don't have the money." That is not a good thing to repeatedly say to a child and an autistic one at that. The better solution is look for ways of finding the money. Engage your child's creativity. "We don't have the money" is so final. It teaches nothing but defeat. I have spent the better part of my life trying to overcome that attitude and I still haven't succeeded. Kids who are involved in fund-raising at an early age have the advantage because they understand how to earn money and overcome obstacles.

I wish you luck. I know right now it probably seems overwhelming and hopeless, but take courage. If anyone had seen me at your son's age they would not have predicted success for me either.

 

[aspiemommy]

Thanks so much. I really like your point of view. I think you are right because we have been doing time outs when my sons behavior was not ''appropriate'' (we do our best to try and understand him and accommodate him in certain situations based upon his level of understanding) like for ex: if he can't have something he wants at the store, he screams... We won't just give in to him because he's the way he is... Or when he throws food on the floor because he doesn't get a second slice of cake... you know..

I think setting boundaries is a good think and probably makes the child feel secure and help them in the right directions...

I am really doing my best right now and try to do everything to encourage him and help him build up a lot of self confidence. So much that my brain is running constantly and over thinking EVERY SINGLE THING! It's tiring..

We are seeing a GP on Thursday and I am hoping we can head towards getting a proper diagnosis. Already family members are pitching in saying that's not what he has and that it's our fault he doesn't have social skills because we isolated him too much and overprotected him... Ugh!


xx

 

[Droopy]

Already family members are pitching in saying that's not what he has and that it's our fault he doesn't have social skills because we isolated him too much and overprotected him... Ugh!

Don't worry about that. The same has happened to other members of the forum too. It's basically just their lack of understanding as to what Asperger Syndrome is and/or denial that a relative could have it.