I have three on the autistic spectrum and I am losing it - Page 2

[shelbean91]

Originally Posted by cameliabrowne

Thanks Village Mama, your detailed explanation was helpful to me. I once looked after an autistic child through the IHC and he was absolutely gorgeous and abviously autistic in that he didn't talk and as much as I would have loved to hold him, it wasn't possible to make that kind of connection with him.

I guess I worry that some children who are really just Extra, may end up with labels. I'm not talking about the children who you have described so well.

I also understand how frustrating it is for other parents to take a cynical or skeptical view of your parenting, from the I could parent them better point of view and am aware that I probably came across that way. And so much information is between the lines.

Maybe I also fear that my "Extra" kid might be labelled in some way if I sought help through the health system. I know how easy it is to attract a diagnosis, and if i want that diagnosis, to take all the prescriptions. I have always sought to solve my problems outside the health system because I have very personal experience of having my body become more or less like the property of the health system, when my own attempts at healing have been dramatically more successful than anything that was on offer. So I fear diagnoses and labels, and I guess that underlay my post.

My extra boy does things in a repetitive way - it can take years to process one interest, for instance wheels, or to overcome a fear, ie bumble bees. He upsets his friends with his Extra-ness, and left me utterly exhausted by the time he went to school that I literally sat and did nothing for a year. He is bottom of his class in reading (because his previous teacher managed to turn learning into a nightmare for him). It's not that he can't read, he has just been turned off. He does absolutely amazing jaw dropping things like composing music on instruments he can't play, and is also psychic, as young kids can tend to be. Going places, like the beach or anywhere were things I didn't do unless his father present to help, as we would be there all day and unable to leave without ear splitting tantrums that went on for over an hour. I stopped going out. But he is such a cool kid in so many ways, and I like to think of him for all the amazing things he does. I fear that if I had ever sought help for my despair and frustration during his preschool years, he would have ended up with a label. But then he is growing up, six now, and things are more manageable, and we have more successes than frustrations. So I am sorry if sounded insensitive, I just wonder if sometimes kids who aren't really that far along the spectrum end up with a label that then compounds things, because as helpful as they can be, they also end up influencing the way everyone else responds to our children.
And also, the well known autistic woman who people can probably remind me what her name was says that everyone is autistic, just some are further along the spectrum.

At what point do you resist being classified? Apologies to anyone with autistic children upset by my post, and thank you, village Mama for filling in some of the details, for myself and for other mothers who probably worry from time to time.

If your child has autism, he/she has autism regardless of a diagnosis or a label. If you're diabetic, not getting diagnosed and/or treated doesn't mean you don't have diabetes. The label of autism is really not an easy one to get, believe it or not. Yes, there is a HUGE increase in diagnoses, but it's not easy. There is a very specific criteria (if you google autism diagnosis, you'll find the tools (DSM-IV is the name, I think) and if not met in a certain way, there is NO autism dx.

For us, not getting dx'd means no speech therapy, no physical therapy, no music therapy, no occupational therapy, no feeding therapy, no support in any way, shape, or form. Getting the dx means my boys get all of those things. Each therapy is $100+/per hour and between my 2 boys, we have 8 hours of therapy a week. I'm a teacher. NO WAY we could afford that. My 8yo who is still not potty trained gets diapers, because it is now considered incontenence and they're paid for by insurance. I'm sure you remember how expensive diapers are and I NEVER in my life imagined I'd be having to use them for 8+ years.

So, what you call 'extra', I call autism. To-may-to, to-mah-to. These are wonderfully amazing, intelligent, fabulous kids. I think I'd flip the question to you and ask why fear the label so much? It doesn't change the person. It doesn't change you. It doesn't change how you interact with your son. No one knows the label unless you tell them. You decide what treatment, if any, you wish to pursue.

I also feared 'THE LABEL' and thought it was a horrible, fearful thing. Once I accepted that my son was just my son, regardless of 'THE LABEL', I was much less fearful of seeking things that will help him be the most successful.

I'm not offended by your questions. I don't think they're insensitive, just maybe a bit naive. If my answers seem short, it's b/c it's late and I'm tired. I hope I answered well - I tried to address your points. Having autism isn't a death sentence. I know some who have lost their children and I am thankful for every day I have with my kids.

[earthmama4]

Originally Posted by Village Mama

I think that maybe parents of kiddos on the spectrum might not have the energy to even write out the details of what is going on in thier homes.

THANK YOU! That was exactly what I thought when she asked that question, I'd love to answer, but I don't even have the energy to put it into words. I am so glad you did, though, what you said was exactly it.


I find humour in it all because it is actually pretty funny when you can be in the right mindframe. When you can't though and are worrying about them ever being self sufficient, trying everything available to you to help them, being asked for a million times more patience than should ever be expected of a person. Sometimes it sucks and you wish you could just help them ( not talking cure.... I mean help them in the moment in every small situation) and not feel like you are failing them ( or yourself) constantly. Like if you could just get it together, do it right, and muster up just a bit more energy ( insert superpower needed) they would just get it. And these are the high functioning kiddos. Your stress and concern and the reality of the situation is pretty much hidden from everyone else.
I get it when the OP said she wasn't looking for advice. It wasn't about the videogames or the sibling fighting ( normal stuff) , but more the underlying helplessness and exaustion in those weakened moments before you can muster up the energy for the next round. Sometimes it is just nice to know that someone else understands.

Again, thank you. That sums up *me* and what I am going though right now to a t.

Originally Posted by mamaclukey

^^^^ This..

Nothing is more frustrating as a parent of an amazingly smart and able ASD child who cannot function without loads of help in the real world, than someone saying "He sounds normal to me". I wouldn't trade my son for the world but if you don't live with it.. you don't get it.

Yes! and its the main reason I don't talk to family about it. They are constantly trying to convince me that my kids are pretty normal. "Oh I am sure lots of kids do that" or "Well that sounds like a typical boy-thing". I am sure they think their comments are reassuring, but I find them minimizing and invalidating beyond words. I infuriates me.

And to the mama who was wondering about the label, I grieve for the 13 years my oldest went without knowing that his behavioral challenges were based in autism instead of general anxiety or ineffective parenting. I found it extremely validating for the struggle we both had endured. I hear you about the extra-ness, and being accepting, and I tend to fall in that camp myself. IMO Aspies are not exactly *disabled* but are just wired to think differently, but it just doesn't work well in our society as currently set up nor in typical parenting strategies. So in that way it becomes a disability in that they cannot fully function in society/family without special support. DS2 and DS3 don't have an IEP or any special services at school or anything. Their teachers don't even know they are on the spectrum and they are straight A students. Why? Because long before I knew they had autism, for years, and years, I have been making accommodations for them at home so that they could succeed at school, far beyond what a parent in a typical home would go through. When it is your normal, you don't know different. The benefit of the label for me is that we have another option than to continue to struggle. The school can make accommodations and give support rather than the whole burden falling on me. And I would much rather have our family and friends understand why my son interrupts their conversations or stands too close than to for them to just get annoyed and judge it as a character flaw. I could say a lot more on the subject, but I can see this thread going off on a huge tangent and I'd prefer it didn't.

[Village Mama]

[*LoveBugMama*]

Earthmama4: I would really, really love to hear what you mean when you write this: Why? Because long before I knew they had autism, for years, and years, I have been making accommodations for them at home so that they could succeed at school, far beyond what a parent in a typical home would go through.

(I had to take my son out of school last year. He just couldn`t cope, and sat in the hallway refusing to go into class for several months. Loooong story. But this fall he is going back parttime, and I would love to hear what you have done.)

[quaz]

This may be a strange suggestion, but there is a book about gifted kids called Living with Intensity. It talks about Dabrowski overexcitabilities.... too emotional, too many sensitivities, too much going on in their heads.

There is a section in there that talks about gifted families and how often the issue isn't dealing with one kids and their overexcitabilities, but all gifted kids in the familiy, with all their own OE's, and the parents to boot.

This section very much resonated with me, and is one of the ONLY places I've seen a section that talks about how this is an issue with the entire family, and not just one person being gifted. It also goes on to say how there is very little research on how all of this affects the family.

REading that passage gave me a big fuzzy, because it confirmed to me what I've felt for many years. REading your post, just reminds me of that passage, because the intensity of your kids, and the interaction/interplay... that is what makes it difficult (From the sound of your post). We have the intensity here, but without the ASD (well, maybe in one case).

I've been reading on giftedness for years, and their really is some overlap with things like giftedness, ASD, SPD, ADHD. My oldest I sometimes wonder if she is on the ASD spectrum or not, and if she is, I suspect mildly... but we deal with a ton of OE's, and anxiety, rigidity/justice/rightness. The book was at least a bit useful.

Obviously it won't help much, and I know the suggestion is a bit off in left field, and I don't know how useful it would be in your case, but might be worth looking at a bit.

*HUGS*
Tammy

[Village Mama]

That suggestion isn't out in left field in any way! There seems to be some non definable line between some mildly affected aspies and highly gifted kiddos. I definitely use suggestions for gifted kids to help us find good coping strategies. That is an awesome suggestion.

[vocalise]

OP -- I just wanted to say, it sounds like you're doing amazingly well with your kids. You're feeling overwhelmed and exhausted, but from the sounds of it you are also strong, resourceful, and full of love and compassion.

I worked with a single mom who had three children on the spectrum. Every day, I wondered how she managed to do it without completely falling apart. But she did what she had to do, as do you. There are others like you, but chances are great that they're all too exhausted to share their stories or find one another for support!

Huge hugs to you, mama.

[cameliabrowne]

Thank you all for your replies

michelle: [QUOTE=shelbean91;15650955]If your child has autism, he/she has autism regardless of a diagnosis or a label. If you're diabetic, not getting diagnosed and/or treated doesn't mean you don't have diabetes. The label of autism is really not an easy one to get, believe it or not. Yes, there is a HUGE increase in diagnoses, but it's not easy. There is a very specific criteria (if you google autism diagnosis, you'll find the tools (DSM-IV is the name, I think) and if not met in a certain way, there is NO autism dx.

I'm not offended by your questions. I don't think they're insensitive, just maybe a bit naive.QUOTE)

Hi Michelle, on the whole, I did appreciate the levity in your post and your patience with me. But I did want to reply that in regards to the specific comments about Labels, naive would not be the right word, more based on experience, which I did refer to briefly in my post. I was diagnosed at a young age with colitis, and I know what it feels like to become your label. The colitis became my identity. This isn't unusual. I was given a pretty bleak outlook which wisely, I completely rejected. I persued cures outside orthodox medicine, for what is said to be in orthodox medicine an incurable disease for which you should take pills every day of your life (several). It took me many years. I was told in no uncertain terms that diet had absolutely no bearing on the illness - and yet in the end I found food types that triggered it and kept it going, and since I eliminated them, I just don't have it anymore. If I had taken on my diagnosis and the prescription for managing it that orthodox medicine said was my only way, (and they still tend to look at me like I am sadly mistaken), then I would be in a much worse state than I am. I have a friend who has taken that route and he is in a much worse conditon than I am. In fact, I simply no longer have this incurable disease. So that is why I have a problem with *labels*, because my label was a trap, not a cure.

But I hear you when you say you are able to access funding for the help you need if you do have a diagnosis or "label". In my country, we have free health care, so it is not so much of an issue, that kind of thing - that stress is not there to the same degree.

Someone also mentioned googling a diagnosis. Most of the illnesses you can google to look up symptoms would give anyone with an ounce of anxiety cause for alarm. I trust that to get a genuine autistism diagnosis you would be seeing professionals, as I am sure you all on here are - not figuring it out for ourselves on the net - but then what about young parents without a higher education who are less experienced in filtering the huge amount of health info on the net?

I have to admit that I am concerned, as someone here mentioned, that autism is becoming almost epidemic. I hope that this is not similar to what happened with ADHD in the 80s and 90s when so many children ended up on the drug retilin.

In my parents day, many of these kids were just naughty boys and girls who caused much social embarrassment but eventually grew into amazing adventurous men and women. I don't want to diminish anyone's genuine experience and if this is not you, this is not who I am talking about. But if you have had a nice pliable child, or your brothers and sisters have one or more, it can be a shock to get a livewire.

BUT I would like to stress that what I am writing does not apply to autism in its - well once again what point on the spectrum is the cut off point between coping and not coping?

I also have a friend with an aspergers daughter, who I know well, and who was amazing when she was little. Now she is very drugged up most of the time and I really feel for her and all she will miss out on. I don't question that her mother knows what she is doing. I have to trust that she does. But I sense Jessica's loss, and her knowledge of her loss, too. And we all know that drugs have side effects. What aspects of her behaviour - her paranoia for instance - are to do with the drugs? I really don't know. I have to trust that her mother knows what she is doing. and I don't judge.

My best friend at varsity was a beautiful young woman who had somehow ended up in a mental institution as an adolescent. Her parents were keen for her to be there, she said. She had outstanding talents like piano and art. She would still be in there if it wasn't for a nurse who had taken her case and got her off the drugs she was on. once she was off them, she was fairly normal. Wired. Smoked too much, drank to much coffee, but no way she should have been in an institution. She was, when I met her, recovering her life. I trust it doesn't happen that way any more, but that was only 20 years ago.

I am not criticising those tired parents with autistic children - as I said I once worked with an autistic child and as gorgeous as he was, he was unable to talk and emotionally unreachable. No parent or carer was able to penetrate his veil.

I would also repeat that I have had the family scepticism experience in regard to managing my kids - in my case in terms of diet to avoid food intolerances etc, and also respecting my kids individual personalities instead of expecting them all to be football stars. But if your family thinks your kids are basically normal and what's the problem? then what is the problem? Let them look after them for a weekend or a week if that will help sort the matter out.

In any case, more debate on where the line is drawn on the spectrum and also the downsides of getting a diagnosis and a label can't be that bad a thing? Can it? And at what age should a diagnosis be made?

I hear you when you talk about severe repercussions like incontinence at age 8. I would be devastated - if it was during the day. Not at night-time because that happens with average kids as well.

When it comes to preschoolers I wonder whether its too soon to be comparing them with the "normal" population.

I fully expect to be taken to task on this again. Go for it! I would like to hear more about it. I'm not even going to reread my post for sensitivity. I'm just going to post it and listen to the feedback. Be assured i will listen and I will also read your posts properly.

[QueenOfTheMeadow]

Hi Camiliabrowne! Welcome to MDC and the Special Needs Parenting forum. You sound like a wonderful concerned mother with a lot to add.

I am the mother of a child with autism. He is on a special diet, no gluten, dairy, eggs, dyes, and basically clean eating. He is also going through chelation because he tested high for both mercury and lead in his system. We have him on many different supplements. We make many many accommodations for him at home and he is in a special class at school.

Despite all of this, my oldest son is on medication. He was getting violent. We couldn't leave him alone in the same room with his brothers. I had to pick him up at school because he was having such a meltdown that they had to have the children in his special class leave the room..He was crying uncontrollably that he needed help, that he didn't want to hurt anyone. It was incredibly difficult for me not to feel as if I had failed. But now that I see the difference in him, how happy he is, how much better he focuses, how much happier with himself, I know I've made the right decision.

As for incontinence at 8 at night, you may not believe it's a big deal, but when your son is peeing once or twice a night through his pullups, and is sad and upset each morning, you would understand that it is a big deal.

I have two other children who are not on the spectrum. My middle son is on a special diet, no gluten, dairy, eggs, dyes, and basically clean eating. He is on supplements based on his blood tests. He has the label of gifted with a learning disability. He has accommodations at school and at home.

My third son would be labeled "normal". He is on a special diet, no gluten, dairy, eggs, dyes, and basically clean eating. He is on supplements based on his blood tests. We make accommodations for him with his weaknesses and encourage his strengths.

So, a lot of the things you are talking about are things that many of us do whether there is a diagnosis or not. As you can imagine, being on a natural family living site, many of us have experimented with alternative methods of healing, not only with our children with special needs but with our neurotypical children.

You would probably benefit from reading this thread. http://www.mothering.com/discussions...d.php?t=926323
It has a lot of great information regarding autism and autism acceptance.

[Mama2Xander]

cameliabrowne, I realize that you probably have good intentions, but I really don't think this is the place to start debating labels. The OP is HAVING A HARD TIME (and I SO get that), and whether or not you think kids should be "labelled" or not, or whether you think they are really autistic or not, is really a) not the point, and b) not at all helpful to the OP.

Perhaps this discussion could be taken to a separate thread? I totally respect you trying to understand, but I just don't think this is the right thread for it.

OP: Big hugs... wish I had time to write more.

[DaughterOfKali]

Many many hugs to you.

I only have one child on the spectrum but wanted to offer you support.

[gr33nie]

cameliabrowne

It sounds like you have some interesting points and would like to get a debate/conversation going. Please start a new thread. It is not fair that this thread is beginning to be about you and not the OP.

[shelbean91]

OP - it sounds like you're doing great. Things are more challenging and we have to worry more with our asd kids than our NT kids. I will open a separate thread to discuss things with cameliabrowne. Sorry for going OT.

[BellaClaudia]

Oh huuuuuuuuge hug. I can't imagine what you must be going through. I can't even start begining to imagine how difficult must it be at the end of the day. You are so strong and so brave doing it and being the wonderful and loving mother to them who have no idea how blessed are with you the way you are with all the love and care.

I don't have any advise as to how to make things easier since you seem to have all technicalities figured out, yet it seem of little help.

I only can suggest trying to find some distance from time to time.
Moments that you can just leave them safely with someone you can trust and go and do something that can make you put into totally different mind set.. do something out of this world different. This makes doing daily struggles somehow easier. Even if it is a little trip to the movies by yourself.. seeing a movie just for yourself, being in theather brought into different world for even just 2 hours.. forgetting about everything that is difficult and painful and theng going back to it fuull of different emotions or feelings from the screen.. someone elsess joys troubles..

I love to watch comedies and read jockes as this just relaxes me and make things that ar tough less tough. Things are what they are.. we only can change the perspective on them.. and somehow the thing is that
even if they don't change but we perceive them in new way they can't hurt or tire us just the same.. It is like being tired and repeating oneself I am tired.. oh I am so tired.. makes us even more tired.. but when one just never uses or thinks aobut being tired then one just is less tired by virtue..
the same works with being hot .. it ie easier to deal with heat when one's mind does not constatly think how hot it is..

It must be extremely difficult even to forget about your situation for a second but if you could give your mind a break then your body and mind might be stronger to go back to the task.

Lastly.. I was reading somwhere that if more then one child in a family has autism that there might be some environemtnal contributor to it.
I am thinking maybe this is totally irrelevant but maybe there is something that your children are subjected daily and make them sick and their actions unpredictable.

I was reading in that article that parents did a lead level test in their children finding that all children had very high level and then they started looking for sources and found something that contributed on daily bases to the lead level, once they found the source and eliminated it things dramatically changed for better. I am not sure where I red it as it was long time ago
but I remembered the strange coincidence of all children being affected
and it was not full specrtrum either.

Lastly, I wanted suggested delicious snack that could help to get rid of many toxins from your children bodies.. a watermelon, as much as possible.
This old chinese method of curing patients poisoned with arsenic
is amazing how it clenses body of all bad stuff..

Maybe this would help on some level?

I know that if it won't help it should not harm either. I am believer in "first do no harm" creed and I think that watermelon is not something that might be consider harmful.

Lastly.. I know that it is rater silly statement but being tired makes everything more difficult to cope. Please look for some ways to rest more.
It won't change things but it will change how you cope with them, and this might be a major difference.

Wishing you lots of Peace.

Hugs.

[quaz]

Originally Posted by Village Mama

That suggestion isn't out in left field in any way! There seems to be some non definable line between some mildly affected aspies and highly gifted kiddos. I definitely use suggestions for gifted kids to help us find good coping strategies. That is an awesome suggestion.

Glad to hear, I was understandable. :-) I agree, there can be a fine line between many of these spectrum items. I just wasn't sure how the OP would take the suggestion or how much understanding there is out there about some of this.

For my daughter I use both gifted strategies and Asperger strategies and occasionally some SPD techniques, despite only the gifted diagnosis.
Tammy

[buttercup]

I have nothing to offer but (((HUGS))). Just taking this in for I also have three with autism. 2 with classic autism and my youngest was just diagnosed as being on the spectrum. Even though my kids are not older, I can see the complicated issues in my dealings with them from the stories you share. My 6 yr old has been able to read before entering Kindergarten, but occasionally forgets the steps on what do do right after he goes potty or where to put his dirty clothes (yet he has been putting it in the same spot since he could do it independently).