Parents on the spectrum

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I am a parent on the spectrum and I have two sons 7 and 10 who are both borderline aspies. I too struggle with having my routines or goals disrupted. I'm not sure I can give you any clues as to how to cope. I think I've just had to drop most of my goals and fit in with theirs for now.

I do have a wonderful husband who gives me space away from the kids when I need it. I also have a choir I belong to which gives me some me time once a week.

But the house is a shambles because I have no one else in the family interested in picking up, and I run out of energy to do it all. I struggle with regular overloads and meltdowns and my body collapses with muscle spasms so I can only do so much. Not to mention my poor executive function becoming overloaded by all the extra work and organisation required with two other DISORGANISED people in the house.

But I try to embrace it all as the creative and loving space that it is. When I have my (regular) screaming rants I realise its time for some quiet time in another room. It's one of the signs that I'm heading over the edge into meltdown territory

Hope this is of some help, even if just to let you know you are not alone! Solidarity!!
We can do this!

Thank you. I really love this forum. I went for an evaluation last night and was dx'ed as Aspergers. I thought after so many years of suspecting this, that I would be relieved. Instead I feel overwhelmed by complex emotions. Then doubt creeps and I wonder: Did I give a fair and accuate assessment of myself or did I need this answer so bad that I could only remember portions that support my case? I do not feel settled, as I thought I would. I am left feeling even more confused than before.

This psychiatrist, contrary to what all the EI psychologists have told me, was pretty adamant that children do NOT outgrow their diagnosis. They simply adapt, but the issues are still there. I am pretty sure my first son is textbook PDD-NOS, no argument there, but he has made such progress that so many people think that he's a "normal" kid and that I'm a neurotic mom or something. But when he has meltdowns in public, then I'm the inadequate parent who can't control my kid and enforce proper behaviors. Adhering to structure and schedules (which was advised by many professionals) has actually made me MORE rigid in my own behavior. It is a vicious and frustrating cycle!

My husband went to the evaluation with me. It was helpful for him as he now understands me better and realizes all the things I did that maybe pissed him off or others off in his family were because of this complicated brain wiring. On one hand it is a relief on the other hand I feel like I got a pass on something I don't deserve.

I know how you feel. I spent about 10 years suspecting Aspergers before I was diagnosed last year. On one level it was a relief to not have to constantly say"I think I'm aspie". But on another level it was very emotional, as you now have to face a lifetime of knowing your diagnosis. How this affects you is something only time will tell.
I had a huge anger time, where I ranted against what had been handed to me in life. Still do sometimes, when all my friends are going out to a noisy party and I'd love to go, but know its not the best use of my energy, so I stay home.

It's interesting what you say about the effect it had on your husband, because I've noticed the same thing. My husband now asks the kids to keep the noise down, or sends the dog out when it's chewing noise is worrying me, etc. whereas before he would have been puzzled.
I also find it useful to now be able to tell teachers and drs etc what is going on, especially when I have a public meltdown.

I think worrying whether you did the test right is such an aspie symptom! It made me smile.
I also really loved your description of how your eyes go jiggly when your routines are disrupted. Such a gorgeous aspie description!
My son says his hands go loose when he is scared of heights

I agree that kids don't grow out of their brain wiring, it will never come naturally for them, but they can learn modes of behaviour in life. This will always be slightly unnatural, and require more energy, but they can pass for "normal". I'm evidence of that!

I think we become more rigid when adhering to structure because a) we are perfectionists, and b) are aware of the consequences if we don't. It can be a vicious cycle because the tool(adhering to routines) which was designed to make life easier, becomes the goal. And we feel we've failed if routine is broken.

I'm sure you will work out some strategies as you move on, and as your kids grow.
Give yourself some time to get your head around your diagnosis too, because that is huge!

All the best.

Hi, I am an NT wife of a husband and two young boys (8 and 2) who have all been diagnosed with Aspergers. It is a constant struggle, I will not lie. I take care of everything, from housework to constantly reminding my husband of our children's developmental issues. You will have to get used to being lonely, find friends and hobbies of your own to occupy yourself. My husband and children don't find it necessary to speak to me ever. As for me, I am a very social person, I also translate when my husband or 8 year old say something so offbeat that it makes people run for the door. I have lost some of my family over some of the things my husband has said. What matters is that you understand, you can empathize, and you can love them even if no one can understand why. My husband and children have allowed me to grow in ways I never thought I could. Love is stronger than any other human emotion, and it is your continuing love and patience that your family depend on. Don't give up. Much love....

Hi, I am an NT wife of a husband and two young boys (8 and 2) who have all been diagnosed with Aspergers. It is a constant struggle, I will not lie. I take care of everything, from housework to constantly reminding my husband of our children's developmental issues. You will have to get used to being lonely, find friends and hobbies of your own to occupy yourself. My husband and children don't find it necessary to speak to me ever. As for me, I am a very social person, I also translate when my husband or 8 year old say something so offbeat that it makes people run for the door. I have lost some of my family over some of the things my husband has said. What matters is that you understand, you can empathize, and you can love them even if no one can understand why. My husband and children have allowed me to grow in ways I never thought I could. Love is stronger than any other human emotion, and it is your continuing love and patience that your family depend on. Don't give up. Much love....

If a teacher at school says hurtful stuff to your child, should it be reported, or is it better to just let it go. (?) My kiddo has an obvious speech impediment that the school is aware of. Also, aware that the teacher is generally known to be a jerk. This is middle school - teacher in question seems to be shunned at school for being mean and a bad teacher.
The teacher asked, "most normal students would turn these in: I don't know why you decided not to be normal."

reposted

Last edited by Eureka-C on 05 Mar 2013, 11:37 pm, edited 1 time in total.

I would definitely report them. That is crap! I'm sorry, but what a sorry excuse for a teacher. I have moved my son twice for stupid comments as you have described above. My son's first grade teacher used to humiliate and use my son as an example for a "bad kid." Once your child has been labeled "different" or a problem child, the whole school, from administrators to other teachers, will automatically treat him/her as such. You are the only advocate your child has, fight. I have fought and defended my child and his behavior against principals, teachers, counselors, school psychiatrists, etc. Your child's teacher is showing nothing but their own ignorance, and quite frankly it's sad. Research your child's rights, in your state. Don't let your child be dumped on, remember it's probably just not your child but others who could be hurt in the process. Hoping for the best....

yes. and if the teacher is known to be mean and a jerk, the administration may be trying to collect information like this to be able to let them go. It is hard to fire a teacher. I would write a formal complaint against the teacher, and ask for my child to be moved to another classroom. I would also let them know that I would like for it to be handled well by the school, but that I had no qualms going to the district administration if they were unable to successfully resolve the problem.

As an Ex-Teacher, I am really sorry that your child was humiliated like that.

Also, you may get more responses in the main parent forum.

Thank you for the responses, they help. I am going to write a complaint to the principle, because speaking face to face is really difficult to the point of disfunction for me. (In a different way than my son).
What I don't understand is why a teacher would want to be mean to a kid who os just trying to get along in school and on top of that, up til she started mis-treating him, he had all 'A' grades.

I've seen many people react in similar ways. Somehow, they think you can 'choose to be normal'. It's ignorance, combined with jealousy. Jealousy because, usually, they have been treated badly by their own parents or teachers. With some people, this leads to some kind of 'I went through this s**t, now it's your turn' concept. Really weird.
The people that think of me as an 'overprotective mother who simply needs to be stricter to sorten her kid out' are usually people who had terribly strict mothers and / or never had the feeling they could be loved for being their imperfect selves.

I'm pretty sure I'm an aspie, and my 7 yo son was dx last week. He's been on spring break this week and I'll be going in (or calling) tomorrow to set up iep. He's been having a hard time with kids teasing him by mispronouncing his name.

Sometimes I feel a bit mean when I'm happy that my daughter is like me.
I know being like me is hard. I also know that once I got things figured out, I've been rather happy that I am the way I am, if that makes sense

She's got the same flying-off-the-handle at seemingly nothing that I had nearly forgotten about my childhood years. Of course this can be frustrating at times, but I do a decent job at guessing what might be bothering her. Although I'm not good with the 'in your shoes' thing in general, we have so much overlap that thinking 'what might work for me' actually often does the trick.

Her need for things to happen as she envisioned them often clashes with mine, so in that sense it's more difficult I guess. Also she'll probably need me to do a lot of explaining on her behalf which I'm dreading, if only for the extra energy that will cost. Then again, I look forward to being able to make things slightly easier for her than they were for me.

The interesting part is that I have over-adjusted and all but lost myself in the process. She is obviously not very adjusted yet, which helps me remember the way I was before I started 'acting the part'. I feel we should be able to find a middle ground together

I'm just sad that the thing that makes her the perfect child for me is also what will stand in her way because so few people understand.

Hi there!

I am writing as one day I would like to have kids, though for now I am in my twenties and still single. For the first time in four years, I have what looks like a full time permanent job. No small undertaking and am far from family. I have been told though that looking after just me is a lot, and if I find keeping a job difficult as well as my executive functioning issues, how can I ever have a child, especially one with an ASD. None of my sisters have a diagnosis... I suspect being very ill shortly after birth contributed, so no one in my family really knows what I go through, I think.

Admittedly, I go through Martha Stewart stages, but they never last. How have you wakened your inner Martha, or has this all been possible only being a bit organized?

For the record, my yearly probation is up in three weeks!

I have been putting off looking for a husband and starting a family until this job thing is not an issue... maybe I can get things together soon!

For the record, though like some of you parents I have seen on this thread, I was just diagnosed this year, and maybe as my AS is higher functioning, I wondered whether or not I did well enough on that test, whether or not I had given the answer in expectation. But the psychologist noted other parts of behavior so I navigate between looking NT and not. I am a children's librarian, so I get to indulge my inner child with picture books. I work with kids, and really care about each of them when I can. I jet don't know that I can handle a child with AS or who is NT.

You are not mean to be happy your daughter is like you. AS is never easy for anyone, but you can understand her difficulties...

I agree with all of this! My parents were not consistent with me. I would go unpunished for something one day, and another day have my books taken away for two weeks. It made me suspicious of my parents' rules and increased my desire to secretly break them. Rules and punishments with no rhyme or reason are confusing for any child, but to a kid who is already struggling with these things, this will create problems rather than solve them.