Feeling So Helpless

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I am a 23 year old mom with a wonderful 3 year old son. About a year ago, we (myself, my mother and my son's daycare) began noticing some behavior that seemed a little "off". These signs/symptoms are continuing today. Nathan doesn't watch cartoons or "normal" kids programs - he would much rather watch the Dish Network Help Channel over and over and he now has any given part of the half hour program memorized. He only likes toys that make noise, or play music, and the only thing he will actually "play" is basketball. He seems to never listen to rules or instructions. When speaking with him, he does not present his own thoughts and will usually only repeat whatever it is you have said to him. He says "no" even when he means yes. The thing that really got my attention is how insanely smart he is. He seems to memorize everything; entire books, songs he hears on the radio, things he hears on tv. He recognizes symbols when we drive about town (AT&T, McDonalds, etc) and will call them out. His favorite thing to do is play on the computer, and he can do it 100% correctly and on his own. He doesn't need help running his games or accessing Internet websites. Although I felt in my heart there was something that just wasn't right, I figured I would give it time and see if things got better. That was until a representative from the State health department made a routine trip to my son's daycare and requested I contact hr becasue Nathan's behavior caught her attention. I guess the main problem is that he would play in the corner and had no interest in group activities. After that, I began taking Nathan to a child development specialist who, over several months, stated that Nathan had classic signs of Asperger's Syndrome (he has not been officially diagnosed). For a while, Nathan seemed to be getting better, but it is now apparent that he is not doing much better than he was. I am now going to be putting him back in a program and getting him an official diagnosis.

This is where I stand now: I am 23 years old, work full time and I am doing online courses in a State university, working my way toward a degree in registered nursing. I have physical custody of Nathan 95% of the time becasue his biological father chooses to have virtually nothing to do with him. Nathan is with me and my boyfriend of the last year and a half virtually all the time. My problem is that I am just starting to really absorb the fact that there is something wrong with my son. I love him more than anything, and that will never change, but I feel so helpless. I know there is no cure for any Autism spectrum disorders, so I just keep thinking about all of the bad that can not be fixed. I imagine Nathan not being able to go to a regular school becasue he can not pay attention. I think that he will be looked at as "weird" and never having friends. I am under constant stress because no matter what I do or try, there is no impact, positive or negative. I took Nathan to the park yesterday, and he played by himself. It broke my heart to see all of these kids playing with eachother and having fun, and there is my son, sitting on the ground by himself, throwing rocks. I don't know what I expect from posting this, but I am getting to the point where I want to cry all the time. Not to mention, having a "special needs" child is causing problems in my relationship for the simple fact that we are both so overwhelmed. I just need some sort of help or suggestions because I feel like I am going to break down. I know it isn't right, but I have that whole "Why me, why MY kid" thing going on. I am more stressed out than I will lead on to anyone, including my boyfriend or mother (who are 2 of the only 5 or 6 people who even know anything about this). I just don't know what to do...

Don't worry. There is nothing wrong with your child. AS is not something wrong, and it does not under any circumstances mean your child has to be in 'special classes.'
If it will help, try to get him to a psych or maybe a counseler and they might be able to help with the not paying attention in class.

I myself have AS and in school never had any friends. It didn't hurt me at all. Just be there for him, become his friend and don't alienate or treat him like he's below anyone. Neurodiversity is not something to be ashamed of (like say, race), but to be nutured. Try to steer him to intellectual pursuits that he would excell in, or something of that nature.
Should the Lord will it he will reach his potential: Knowledge his Bride, glory his companion. His legacy, limitless.

May God bless and protect you and your famly to the end of yor days.

Hang in there.

First off, you're going to be OK. Your son is going to be OK. Even NT "normal" kids face challenges and it is never easy being a parent, even in the best of circumstances. I can't tell you how many times I thought "I just can't do this. I was never cut out to be a dad" yet my kids are turning out pretty good. These things have a way of working themselves out in the end.

OK. The good news is you've found out about his AS when he is still young. It doesn't mean that you'll be able to give him some magic pill and "cure" him but at least you'll know why he does some of the strange things he does. That, in and of itself is huge. You'll be able to work with his teachers and you yourself will be able to network with other parents of AS kids to devise a gameplan. Some of what you will try will work, other things won't. That's true w/NT children as well though.

Will he be a bit "different" Yeah, probably. But that's OK. Will he act a bit "weird" at times? Maybe, but so what? Brillant people are often seen as strange by the masses. And don't feel too bad about him playing by himself. He probably likes to play alone. It's OK, really. He probably doesn't miss anything.

IMO people w/AS have many gifts to give the world. You just need to try & help him line up his special interests and talents w/a suitable career sometime down the road. Play to his strengths and while acknowledging them, don't stress out too much about his weaknesses.

Again. Things are going to be OK. Cheers. : )

'insanely smart' ...<grin>. You are very lucky, and Nathan is fortunate you noticed the signs early.

It's difficult for NTs to understand how important being alone is to aspies. Socializing will probably always require extra energy for him, and time alone to recharge. But he can learn to socialize well, and might make the adaptations by himself. With good guidance, he'll probably adjust fine. NT children strengthen their social skills like muscles, automatically through lots of practice. Aspies learn social skills by cognitive adaptation: we create intellectual models of the social situations, and are conscious of the decisions made.

We're typically bad at making superficial friends, but are more likely to have one or two deeper friendships, with a great deal of loyalty.

I was lucky that, when I was young, counsellors told my parents to feed my all the information I wanted, stand back, and watch what happened. My parents and school were very supportive, and even though there weren't any programs to teach me the specific skills I needed, I made my own adaptations. I'm not saying it wasn't hard, but I've had a rich and exciting and fulfilling life, with lots of adventures and friends, and am in a solid relationship. And I wouldn't trade being aspie for being NT for anything in the world (except maybe whirled peas).

Just help Nathan be perfectly himself, and you'll both be great.

And welcome to WrongPlanet!

One thing I want to make sure to get across is that I absolutely love my son more than anything in the world. He is my favorite person. He is so funny and nice, and has so much energy. He is generally happy and I am thankful that he is the wonderful person that he is. I never TRY to think about the fact that he potentially has AS, and I don't think I treat him any differently than I would any other child, but it is the frustration and fear of things to come that wears on me. Like I get so agitated when I spend 10 or 15 minutes saying something like "What did you do at school today? Did you play with friends? Did you read books?" and he says "School today" over and over. He is so, so intelligent and has a ridiculously huge vocabulary, so it is frustrating for me when he can't say "Yes" or "I want..." I know it isn't his fault, but I think a lot of my frustration comes from fear. I know how amazing my little boy is, and I get so upset when I think he might get made fun of by other kids or that he will be seen as trouble maker because he can't pay attention (he can not follow a simple instruction and is very defiant, even for a child his age). This is all so new to me and I don't personally know anyone with a kid with AS, so I don't feel like there is anyone that I already know (friends or family) who can relate to me because they haven't been through it. I am thankful I have found this site.

Believe in and love your child, no mater what. There will be some hard times and some amazing times. Most AS childern do not learn from disapline, they learn from discovery. They see the world differently and are the ones to ask 'Why not?"


Listen to the mustn'ts, child. Listen to the don'ts.
Listen to the shouldn'ts, the impossibles, the won'ts.
Listen to the never haves, then listen close to me...
Anything can happen, child. Anything can be.
~Shel Silverstein

NathansMommy,

1. Welcome. You've reached a supportive community and we'll be happy to help you through whatever problems you and Nathan have.

2. Forget everything you thought you knew about autism spectrum disorders. In particular forget Hollywood. They always show the worst case scenarios because quite frankly, the normal cases would make dull films.

3. Everyone is an individual. Not all of the advice you receive here will be relevant to your son. He won't react the same way as the books say in all cases. He will have his own little quirks and differences.

4. You're blameless. It's genetic. You're a good mom - especially since you're smart enough to seek help. Don't let anyone tell you any different.

5. Early Intervention is "king". You don't necessarily need to seek a diagnosis before the age of five but you do need to be practising social stories before then. There are a lot of well-adjusted adult aspies around today who didn't have the luxury of early intervention and special education. Your son will be fine.

6. Labels don't hurt people, attitudes do. Getting a label for your son will give him access to extra help, funding and care. It shouldn't be a negative thing and you'll need to keep a close eye on people you interact with to make sure that they have the same viewpoint. If your son ends up with the "wrong" teachers, you need to get involved.

7. You're now an Evangelist. Like it or not, from the minute you accept a diagnosis, you'll become a crusader in the war against autistic sterotypes. It's not particularly rewarding but it's necessary.

8. Have fun. There's still plenty of time for fun. You've still got your family and you don't need to worry about things that haven't happened. Don't sweat the small stuff. Just enjoy the places life will take you. If you can relax and accept things, you'll all feel much better.

Good luck.

The picture didn't come up before. He's so cute!

I had to smile at your last post, because he sounds completely normal to me. You will need to make adjustments, so you treat him like a normal aspie child, rather than an NT child. The lack of response to "what did you do at school today" is pretty typical. It's a question without a clear purpose. You might get better responses if you asked about things he played with and did.

Questions like "what do you want" are open ended, and more difficult than 'this or that' questions.

There are some games you can do, and it will take awhile to adjust, but once you do, it will be fine. Aspie and NT are two different brain languages, so you have to learn to speak aspie, in order to help Nathan speak NT.

Of course you adore him. He's your boy. And, honestly, I've found AS kids particularly easy to adore. They are utterly confident (usually; some get kicked to the curb early on, or have depression / anxiety issues, but it doesn't have to be that way and it doesn't sound like your son has those co-morbids), they talk about unique things you've never thought of, they often stay "young" longer, and there seems to be this sparkle in the eyes that so many have.

What interferes is all the fear you've been taught. Sure, you are on a different parenting road than most, but it isn't something to be afraid of. Part of the awareness movement has been a raise in fear; that is an issue I have with many of the big name autistic organizations; I think they've fed fear because it increases research donations.

And, well, it is an unkown for you, still. But getting a diagnosis is like being handed a key, and one of the first things you'll discover is that you DO have to parent him differently. Discipline with consequences is not king when parenting an AS child; teaching and logic are. Your child is likely to follow to the letter all rules he buys into; the trick is, he'll have to buy into them. And tantrums ... well, AS kids often have meltdowns, not tantrums, and the cause is overload, so discipline won't help at all. What will help is making sure expectations are clear, consistent, and met. And so on. Parenting an AS child IS different, but it has a logic and a pattern to it that can make it a gift, in its own way. I also have an 8 year old NT daughter and, I swear, parenting an AS child is a piece of cake compared to trying to navigate little girl social games in many, many ways. Every parent has burdens to deal with; ours are just a little different.

So welcome to Wrong Planet and best of luck on your journey with your amazing child.

Hello and welcome to Wrong Planet

I hope that you find the help that you are looking for here. If you have some free time, you may want to browse some of the posts and articles on this web site.

Since you are just starting out on this journey I feel that an analogy would be appropriate and useful, so here it goes:

Discovering that your child is autistic is like having an injury, and losing your foot. At first, your in shock. You weren't expecting to lose your foot, and most of the things you think about are how this is such a big problem and how things would have just been better had you not lost your foot. You used to play soccer, and enjoyed hiking, but now you can't do it anymore. Likewise, you probably are thinking that your child's autism a problem, and your wishing that he wasn't autistic. You are seeing nothing but problems and are afraid of everything you feel your son has lost. But what is important isnt that the problem exists, but how you deal with it.

If you sit there bummed out that you have lost your foot then the only thing you are going to accomplish is becoming depressed. Likewise, continuing to try and live your life exactly as before isnt going to work either. You cant go out and play soccer with only 1 foot, it just wont work. Another way you could make the situation worse is by desperately trying to fix the problem. You do a bunch of research on stem cells and regrowing limbs, and get your hopes up. You can pay professionals to look at your limb and figure out a way to fix it. And all this leads to is you wasting a lot of time and money and still missing a foot. What you need to do is not sulk, or try to ignore the problem, or try to fix the problem, but to simply accept it. Because you see, as soon as you accept the problem, you can begin working on ways to overcome the difficulties. You can get a prosthetic foot and learn to walk with a cane. You can move from the 3rd floor of your apartment building to the first so you dont have to deal with the stairs. You can find other activities besides soccer which you find entertaining, like board games or something.

Now if you just sulk and pout over your son being autistic then all you are going to do is become depressed. That doesnt help anybody. I know its not what you expected, but its not the end of the world. Likewise, with your autistic son, you can't expect things to be exactly as you foresaw. He probably will not be coordinated enough to play sports. He likely wont have many friends, and he will likely be weird his entire life. If you keep trying to force him into the mold of normal with therapies and treatments then all you are going to do is just create frustration for him because he cannot be normal, and frustration for you since you arent getting what you want. You can also try and spend money and do research on some hypothetical 'cure' but all you are going to do is waste your time and money and come up empty. What you need to do is accept the fact that your child is weird, and figure out how to make the most of it.

Despite what all the bad publicity says, people with autism are not doomed to lead an unproductive, unhappy life. I would be lying if I said that being autistic was all puppies and rainbows; there are definitely problems that do arise from the condition. But that doesnt mean that we cannot learn how to cope, adapt, and live productive, enjoyable, and meaningful lives. We will just do it in a way which is different then most people do it.

The best advice I can give you right now is to accept the fact that your son is weird, but it is OK. He doesnt need to be normal to lead a happy life. Likewise, you dont need to go around chasing a cure and putting all your hopes on some therapy. Trying to help your son isnt a bad thing. And if you want to try some different techniques to try and help your son learn some useful skills then I have no problem with that. But dont listen to the scare tactics of others and spend unreasonable amounts of time on money on random therapies just because society tells you to.

While most 'experts' on autism are indeed trying to help, you have to understand that their total knowledge is based upon reading some text books, listening to some lectures, and meeting with autistic children for a few hours per week at most. The things that the experts will tell you might be useful, but dont take them as gospel truth. If you want some answers from people who have spent years raising autistic children, and actually lived the life themselves, then you are better off asking people on this board then making an appointment with an overpriced doctor.

You and your child are at the start of the long journey that will be the rest of your lives. Make the most of it and learn to enjoy what there is to enjoy.

Actually, I'm not sure that it's like losing a foot...

More like getting along mostly fine and then discovering later that lots of other people actually have two feet, not just one.

First of all - dont panic - you are not alone and talking to everyone here will help you fight the fear (because it can get pretty overwhelming at times). My son wasnt diagnosed until he was 19 (he's 20 now) and in some ways it was a huge relief to find out that his uniqueness actually had a label. I used to worry about him so much because he was so different to his brother and sister (he is in the middle) and as he got older the differences became more pronounced.

Some kids are able to socialise but they do it on their terms and their terms only!! I have learnt this from experience. Shea does have very very good loyal friends and his brother and sister's friends are also included as "family". Maybe because of the closeness in age to his brother and sister and the fact that I was a single Mum without family nearby made a difference to him when it came to socialising, I dont know, but he definitely does okay with friends (he was popular from the time he went to Intermediate school - I think thats Junior High in America - he was 11) and social situations. He does withdraw the minute there are too many strangers around, hates shopping malls and night clubs and he chooses who he is friends with - not the other way around. He doesnt seem to have ever felt the need to be accepted and is quite happy in his own company. In fact he doesnt hesitate in telling his friends to go away when he needs his own space - so they do. He flats with his older brother and a couple of friends.

He learnt to ride a bike, but still cannot do up his shoelaces. He is also learning to drive a car. With Shea we have found that he will not be pushed into doing something that he is not ready to do. He has to make up his own mind that he can do something and then he will do it. Man is he stubborn (well that is what I used to think but now I know that it is the Aspergers).

At least these days Aspergers is known and there is lots of help available.

And seriously, who defines "normal"????? Maybe it is us "normal" people out there that are the aliens!! ! I absolutely adore my Aspie boy and wouldnt swap him for a "normal" kid for all the tea in china!! ! He is a godsend this kid of mine, he picks me up when I am down, always knows when to make me laugh or give me a hug and he is so loving and such good company. Unlike the other two who at this time in their lives are so self-centred and only contact me when they need me!!

I hope everything goes well for you and that you get a positive response from the teachers and support workers who are there to help you and Nathan work through this.

I was speaking more from the perspective of the parent, not the autistic person themselves.

Sorry... my bad. Being an aspie parent with aspie kids it's sometimes hard for me to see how anyone could see it as anything other than a blessing.

NathansMommy,

The folks on this board have given you lots of good advice. As a young mother of a young child, it's no wonder that you're overwhelmed. If you live in the US, your child is entitled to early intervention services. If you live somewhere else, someone on this board can probably tell you what the services are there. These services wouldn't be to "cure" your child, since he doesn't need to be "cured," but with some speech therapy, he might be able to utilize his language better to communicate with people. If he has sensory issues, OT could help him.

I know it breaks your heart to see him not "having fun" with the other kids at the park - but he's probably having his own kind of fun, throwing rocks. There is a whole therapy based on approaching kids "where they are," called Floortime. It presumes that children's actions are purposeful, and allows the child to take the lead. If you think that some kind of therapy is warranted, you might want to look into this, rather than ABA, which is often recommended for kids on the spectrum.

As DW_a_mom pointed out, typical discipline doesn't work with our kids (I'm not sure it works so well with any kids, but that's a separate issue). Discussion, logic, rules they buy into are key. Observers - from casual to close family and friends - may have lots to say about how you handle your child. You need to learn to tune them out. You know your child. If what they say makes sense, by all means incorporate suggestions; but don't let other people's ideas of "proper parenting" influence how you deal with your child. Anyone who has raised a child who is "different" has run across lots of people telling them why they are ruining their child; probably anyone who has raised a child has run across this. With Aspies, the reality is that it is very easy to hurt them, and seriously, by following bad advice. They "bruise" easily and heal slowly. If they feel they've been betrayed, it takes an awful lot to rebuild trust. Some of the main things are to treat your child with respect and kindness, to do your best to understand what he is trying to tell you, and to keep your word.

I realized that could have sounded a bit scary - don't worry: You're his mom, and he loves you - you have a storehouse of positives built up, so if you make a few mistakes, it will be okay; but if other people made the same mistakes, they would be forever banished from his life. People need to understand that just because they are adults, they won't automatically be accorded any level of "standing" in his mind. They are going to have to earn his respect and trust, slowly, over time. Most adults think that because children are children, they (the adults) have automatic authority/trust/respect. That's where so many power struggles get started between our kids and their teachers (for instance). Our kids view themselves as equals, and adults find that unacceptable.

The fear you're feeling now is normal, and you will feel it from time to time. Try not to let it get in the way of enjoying your wonderful boy! None of us knows what is ahead for our children, whether they are NT's or on the spectrum. There are heartaches, regardless. There are challenges, regardless. As parents, we do our best to guide and prepare them for their futures, and to help them grow to be the best and happiest people they can be. There are happy Aspies; there are miserable NT's. There are people who are very "normal" who are very unhappy people. There are exceedingly "weird" people who are happy and have a circle of friends who appreciate their eccentricities. Your son's quirkiness does not need to define anything about whether he has a happy, productive life.