Autism SUCKS...and not in a good way, either!

[Sherilyn66]

I am the mother of not one or two autistic children, but four. Just getting simple tasks like getting them ready for school and out the door is a major undertaking, but then so is just about everything else! I'm in this pretty much alone, as the guy I'm legally attached to does NOTHING to help me. In fact, he only makes things worse. Coping with stress and the exhaustion that comes along with it and everything else is killing me. I'm constantly "putting out fires" that either he incites or one or more of my kids set. I'm exhausted and frazzled!

If anyone has any ideas for coping (Other than leaving Twatwaffle...I can't afford to raise them on my own...) and how to better parent my children, I'd be most grateful!

Thanks!

 

[ItalianStyle]

Sherily

First... and foremost... you ARE a strong woman... and a LOVING parent to your 4 children. I have had some challenges with raising my kids but nothing that may compare to yours but I can understand. Patience... is one word that I may deliver to you. The love you give to them now, you will see when they grow up. I watched through the years as my son was very difficult to even give a hug to... now he's grown up with the qualities I feel best for any man. He knows his manners and he's kind to the ladies... and takes care of his mother when she is not feeling well.

Yes, you will have your days. Try to keep patience.

 

[Desiremakesmeweak]

So I have one autistic kid - and that is the equivalent (I raised all my sisters' kids) of ten 'normal' kids (although even 'normal' children require more than what present day society is prepared to give.

So that means you have forty children...

1. I'd just plain ignore the guy who is not 'getting with the program' - as in literally don't take seriously ANYTHING that comes out of his mouth and stand your ground and get your way. And don't compromise there.

2. Autistic kids are HUGELY sensitive in their stomachs and yet also strangely robust as well and so there may be preparations around where you are that will help them - depending on whether or not you listen to the negative propaganda about what it is made from, then Hyland's teething powder is potentially valuable to you; Brauer's Stomach Calm is sensationally good.

3. Autistic kids are smarter than people think and by a long way and that is half the problem because thay cannot explain why they are doing what they are doing - for instance, shouting and getting angry pumps out adrenaline and grows brain cells so it is GOOD for them (and not so good for parents who think they are being 'hated' or 'blamed' by their own kids, but that is not what is going on).

4. You MUST INSIST that for some amount of the week you get some time off - in other words someone else MUST look after all the kids even for a couple of hours. Not sure how you can arrange that but you have to...

5. A machine that extracts fruit juice from fresh fruit will stop the 'nervy' behaviour of the kids and also almost instantly stop the stimming.

6. Autistic kids generally lack the same amount of mirror neurons that other people have and have to re-grow them from recruiting whatever few they have left after whatever 'incident' caused the autism. Autistic people may have some genetic susceptibility but that will not be what actually 'sets them off' to full-blown autism and what damages the nerve myelination at a young age. So, doing the same thing over and over and over again is actually good for them although sometimes you have to intervene and pull them back a little - however, anything that sees them copy something, or especially some act or action of someone in front of them is EXTREMELY important to encourage.

7. Autistic kids can develop into much more normal adults than people commonly suppose but it will mean you give them EVERY POSSIBLE CHANCE - which basically means your time and your empathy and not much of anything else, really. Money seems like some kind of a solution but it isn't AS MUCH of a solution as people think although hey EVERYONE WANTS MORE. And that's fair enough too.

8. Autistic people have abilities and 'sensitivities' that you will never convince people with no hands-on life experience of autistic people, that such things even exist for real. But they do, and you know it.

9. Essential oils are important - especially rose for their talking, lavendar for killing germs in the air, cedar for asthma or allergies.

10. You can syringe juice and fluids into their mouths if they won't drink out of a glass or cup or even bottle.

11. Massage is critically valuable if you can do it. (Yeah GETTING a massage yourself, well, god...!)

Anything else...? Not sure... Autism only sucks if you have no one around you that is prepared to help. Autism is a positive benefit to Mankind. Autistic people are an evolutionary step forward for the human race. Their brains are significantly better designed to handle modern technology. But they've come before the human race is organised enough to be able to handle them. The 'human race' - that is, the 'old' human race, will never be able to organised any fucking thing itself anyway, and it is surprising to me that it even exists at all at this moment.

 

[GiggLeGasm]

first of all, you'd be surprised what you can afford once you begin living the life that makes you happy.
Aside from that, have you tried parenting forums that are led by families who deal with daily challenges that are like your own? They exist even within specific autistic disorders and often those families can share strategies that are worth trying. They can also help you realize that many of the struggles you may be dealing with it are present in many children so that you don't feel quite so victimized by your situation.
good luck.

 

[Desiremakesmeweak]

And oh yeah, sorry - 'coping...' You can't cope. No one can cope. Barrack Obama would die, Hillary Clinton would die, and Jamie Dimon would frazzle up and die in twenty-five seconds flat the second full day they had to look after REALLY badly autistic kids (or maybe even any of them!).

Superman could not cope. Ms. Marvel is an alcoholic BECAUSE she has an autistic kid (it's not in the comicbook canon but I'm probably right anyway).

 

[Eilan]

You could be a better parent to your children by leaving the twatwaffle.

Signed,
Eilan
Mother to an autistic child
Also the product of a marriage that ended 17 years later than it should have

 

[SweetErika]

I'd also suggest connecting with all the support and resources possible. We attend a local Autism Support Group, and it's a huge help for us to have a "date" to decompress and share resources monthly.

I'm not sure what's available in your state and local area, but we have private and state-funded organizations that provide support, as well. For instance, there are parent-to-parent support organizations and funding for respite care.

Are you using visual schedules and reward systems to make routines easier? Putting your kids' gifts and strong interests to work in a positive way for the family?

Even with one high functioning child, we absolutely have to have organization, routines, rules and an awareness of his sensory needs at all times. Otherwise, it's total chaos in our house.

 

[SweetErika]

Adding that I'm also a big proponent of a whole foods diet and exercise (we use swimming a lot because the kiddo finds water therapeutic).

Our son doesn't have the typical ASD digestive issues, but he's extremely sensitive to processed foods, chemicals and blood sugar highs and lows. Too much juice, dried fruit, sugar or white flour, and he engages in crazy, dangerous behavior with a ton of stimming. He's happy and healthy with whole fruits, low-GI natural sweeteners and a very modest amount of processed sugar, though. Red food dye makes him crazy; even a single orange jelly bean gives him a rash and wild behavior. More than one serving of dairy, and we're in for a cranky kid with diarrhea.

We haven't noticed gluten or casein intolerances, but we have friends who have kids who do better on GF/CF diets. Every kid is different, although chemicals and processed foods aren't good for any of our kids.

 

[Desiremakesmeweak]

Yeah I have to think that processed white flour that isn't cooked properly is very problematic, especially over the longer term. A lot of the kids are slightly different too, but there is almost always sensitivity to the typical 'culprit' additives. Commercial juice is of course, very different to something you extract yourself from a fresh source of some kind that works for your child. And if you can actually get them to eat fruit in its whole condition, well, great!

I think if it is true that in someone's specific area where they reside, there are inadequate or insufficient external resources to help them, this is a tragedy and a social crime.

Anyone who thinks that autistic kids cannot or never grow up into amazing adults is poorly informed - but it is true they need A MASSIVE amount of early intervention and support and services for as long as well, as long as it takes.

And in any case this is also true of so many other kinds of developmental issues that humans can have - Downs', Cerebral Palsy, epilepsy, other conditions...

 

[Bramblethorn]

7. Autistic kids can develop into much more normal adults than people commonly suppose but it will mean you give them EVERY POSSIBLE CHANCE - which basically means your time and your empathy and not much of anything else, really.

Although perhaps better to aim for "functional and happy" than "normal". Obviously there's stuff that everybody has to learn to get by (keep your clothes on in public, etc. etc.) but beyond that, don't go seeking normality just for normality's sake.

 

[Desiremakesmeweak]

Although perhaps better to aim for "functional and happy" than "normal". Obviously there's stuff that everybody has to learn to get by (keep your clothes on in public, etc. etc.) but beyond that, don't go seeking normality just for normality's sake.

So very true.

Which is probably why I said 'much more normal' - it was definitely there in the back of my mind. God, if I had one dollar for every 'normal' person I'd met throughout many years of business... ...I'd be f*n' broke! I think I'd have a grand total of about two or at most four whole dollars!

 

[Desiremakesmeweak]

And back to the physical practicalities for a second: weighted blankets and vests and other clothing items that are heavy or supportive. Autistic people have proprioception sensation needs that others do not have as much.

 

[Bramblethorn]

So very true.

Which is probably why I said 'much more normal' - it was definitely there in the back of my mind. God, if I had one dollar for every 'normal' person I'd met throughout many years of business... ...I'd be f*n' broke! I think I'd have a grand total of about two or at most four whole dollars!

This reminds me of an article about air safety. Short version: back in the 1950s USAF had a big problem with crashes due to pilots losing control of their planes. They had a scientific approach to aircraft design where they took measurements from large numbers of pilots and worked out stuff like the average height, arm length, leg length, etc. etc. then designed their planes around those averages, but it wasn't working.

Then Lt. Gilbert Daniels came along and pointed out that there were literally no pilots who were close to the average measurements - you could find people who were close to average height, but they'd have a non-average arm length, or vice versa. Instead of designing around the "average pilot" who didn't exist, they needed to develop features like adjustable seating that could accommodate individual pilots. I hope some day the same mindset will be standard for dealing with psychological traits.

(I don't mean to downplay the challenges of raising an autistic child, BTW. Been there with a high-functioning kid, and it's hard! But at least I only have to worry about the stuff that's potentially harmful to him and others, not the bits that are just harmlessly unusual.)

 

[GiggLeGasm]

Instead of designing around the "average pilot" who didn't exist, they needed to develop features like adjustable seating that could accommodate individual pilots. I hope some day the same mindset will be standard for dealing with psychological traits.

it's the mixed blessing of having a diagnosis

 

[CoercedAnon]

sherrilynn, my oldest has aspergers so my experiences are going to differ from yours...all the same, the best thing i found was keeping my anger and frustration down when he was going off. it was hard. getting the husband on board was hard, too. we just kept reminding ourselves that adding fire to fire would only create more fire. i would, literally, mentally visualize ice or water or air or anything that helped remind me that i needed to cool off. they are so energy sensitive. the same as when he as a baby, i had to train my body to pretend and appear asleep or he would not go down.
again, this is one kid...high functioning end of the spectrum.
and i also found, and had disagreements with professionals, that one of the things that was socially really confusing for these kids is the dissonance between other peoples words and energy or body language. it was hard to get through to teachers and such that your words have to match your body language or my kid won't trust you and my kid won't want to be around you. i don't know why the generally held idea is that autistic folk can't recognize facial expressions and such. what a load. no. what they don't recognize is how and why a lot of society lies about how they are feeling, or pretends to be in an emotional state that they actually aren't.
he really started to settle into himself around 10. he is 14 now, still emotionally younger than that, but is doing well in his first year of high school.
we also spent a year (i think he was in grade 4 at the time) having cranial sacral therapy done. it is covered, here in canada, under registered massage therapy and done by an r.m.t so our benefits covered it. i don't know if you have benefits, but if you do i highly highly highly recommend cranial sacral for them.
all the best. truly. xxxooo

 

[sethp]

Try to get them in a martial arts program. That can work wonders. I've seen it first hand.

 

[CoercedAnon]

ps:

it does not sound, to me, like you need help in being a better parent. your tone is not bitter, (even toward twatwaffle), and frankly i am full of admiration for you. four. four kids on the spectrum. wow.

i hope this doesn't sound annoying, because clearly it sounds like you don't have any help or respite...so if you can manage to create an extra fifteen minutes in your day, do one tiny thing for yourself. whatever gives you a wee taste of you again.

or even if you can find fifteen seconds in the day...just please find a way to recognize how fucking amazing you are, and do a daily tiny thing for YOU.

 

[SweetErika]

My Aspie is "face blind" and has visual tracking issues. He does recognize facial expressions and body language, but only when it occurs to him to look for those cues (it usually doesn't occur to him without an external prompt at this point). In addition, his own facial expressions and body language can be difficult to match to emotions (he might look mad when he's really happy, not show excitement, etc.).

He's highly auditory, so he seems to rely on how voices sound to identify people mostly, though he also looks at general hair and body characteristics. He has trouble recognizing and naming people he sees daily. The other day he came home distressed because we hadn't invited the little girl who sits next to him to his birthday. She wasn't on the list because he didn't truly connect the name with the actual person until a few days ago, even though they spend 6 hours a day together, ride the same bus, play at recess, etc.

So maybe kids like mine are where some of those notions about facial expressions/body language come from. Still, if you've seen one person with autism, you've seen one person with autism, right? Sometimes health care providers get so into that diagnostic criteria rut that they end up painting every patient with the same brush.

My massage therapist is a trained c.s. therapist, does some work on me, and I'm curious about trying it with my son. Acupuncture, too, although his insurance won't cover that, either.

It's nice to hear your son settled in more at 10! I'm sure you know how good it feels to know it's likely to get even just a bit easier. We've had a rough year with the transition from two years of PM preschool to full day kindergarten!

I'm curious about how, and at what age, people have talked about ASD with their kids. My son's not there yet, but I sense a growing curiosity in some of his questions.

 

[CoercedAnon]

sweet erika, thank you for reminding me of the "if you have met one person with autism, you have met one person with autism". it is true.
i told mine fairly young. my rule with him has always been: if he can articulate the question, he can handle the answer. my family did not agree, however.
when he went to his first assessments he wanted to know why, so i told him that his brain is wired a bit differently than others...also pointed out that a lot of his family are also wired a bit differently. said it wasn't better or worse, just different.
the only time this was an issue was during a social skills group he joined...he was the "highest functioning" on the spectrum in the class and asked me why he was there. so that led to the discussion about what a spectrum is.
this year the transition from grade 8 to high school was the smoothest transition ever. he was nervous, but he really loves knowing that he is in charge in the sense that he is responsible for passing class, or he has to attend summer school. nobody is pushing him, nobody is cajoling, and he is doing better than he has any other grade.
when he was younger, though, transitions were a whole different animal.
obviously i can't say that all asd kids will settle into themselves, but most of the aspies i have known did settle into themselves around the same age. i assume it is a physical, rather than mental or emotional, thing.
and i really hope i didn't sound like a numpty saying 'op. please find time for yourself", as it sounds like she is pretty much on her own. i just know from my experiences that 10 minutes alone, before bed, to do ANY focusing on myself was a necessity.

 

[CoercedAnon]

sweet erika: it took mine until grade 2 to fully and completely adjust to full time days. he may have been ok by the end of grade 1, but i was pregnant with the second and had hyper emesis and i think that compounded things for him.

 

[Bandanto]

I'd also suggest connecting with all the support and resources possible. We attend a local Autism Support Group, and it's a huge help for us to have a "date" to decompress and share resources monthly.

I'm not sure what's available in your state and local area, but we have private and state-funded organizations that provide support, as well. For instance, there are parent-to-parent support organizations and funding for respite care.

I'd second this. Local resources can be hugely helpful. It's great to be here and ask for help and you've already received plenty of great advice, but a local organization or parents group can help you find targeted resources to better help both you and your kids. And because your own mental well being is very important, especially as it drives how you will respond to the crises you have experienced and will experience, it may be beneficial for you to seek some therapy. I'm not talking about any sort of meds, but just a professional you can talk to on a regular basis who can help you more easily find methods to work with your stress.

With summer coming up you may even be able to find a special needs summer camp in your area that you can send the kids to. It's super helpful for you to have your own time to do your own thing and explore your own self as a person. Another way to do this? Again, I mention the parent support groups. Some community centers have programs that welcome autistic kids to be dropped off for a few hours so parents can run some errands or just have some time to themselves (or in your case, just some time to yourself).

 

[SweetErika]

sweet erika, thank you for reminding me of the "if you have met one person with autism, you have met one person with autism". it is true.
i told mine fairly young. my rule with him has always been: if he can articulate the question, he can handle the answer. my family did not agree, however.
when he went to his first assessments he wanted to know why, so i told him that his brain is wired a bit differently than others...also pointed out that a lot of his family are also wired a bit differently. said it wasn't better or worse, just different.
the only time this was an issue was during a social skills group he joined...he was the "highest functioning" on the spectrum in the class and asked me why he was there. so that led to the discussion about what a spectrum is.
this year the transition from grade 8 to high school was the smoothest transition ever. he was nervous, but he really loves knowing that he is in charge in the sense that he is responsible for passing class, or he has to attend summer school. nobody is pushing him, nobody is cajoling, and he is doing better than he has any other grade.
when he was younger, though, transitions were a whole different animal.
obviously i can't say that all asd kids will settle into themselves, but most of the aspies i have known did settle into themselves around the same age. i assume it is a physical, rather than mental or emotional, thing.
and i really hope i didn't sound like a numpty saying 'op. please find time for yourself", as it sounds like she is pretty much on her own. i just know from my experiences that 10 minutes alone, before bed, to do ANY focusing on myself was a necessity.

I think we know when our kids are ready, too. I've received a lot of flak from my mom for choosing X, Y or Z for our son, but I know I have good instincts. And I've always sensed that he needs honesty and extra (sometimes very unusual!) info from us to understand his world.

He has asked for the definition of "spectrum" but not in relation to himself or autism. He's been in OT since he was 24 months, so that's just a part of his life. When he's asked about therapy, I've explained that everyone has things that are harder and other things that are easier for them, and we believe in getting help with the challenging skills, feelings, etc., to make our lives easier. So far so good, but I want to get a plan together for the bigger questions so I can handle them thoughtfully when they come along.

My son likes the TV show Scorpion a lot. Of course he loves the crime-fighting action, but he also enjoys the characters, and he seems to really "get" them. And while it's on the line of age-appropriateness (our kiddo is an incredible mimic/character actor who recently got in trouble for bringing his 'cuffs to school and arresting his buddies--with full Miranda rights read--at recess ), watching it together gives us the opportunity to talk about the characters' strengths, social skills, etc. It's great for him to see examples of how people who feel out of place can put their gifts and quirks to work for them.

 

[auroraborealice]

I have an amazing brother with autism, and another amazing brother who works with young children on the spectrum. Dated two guys with Asperger's. It's a condition that takes many, many different forms. While autism presents incredible challenges, it can also present beautiful and brilliant ways of experiencing the world. I am so grateful for the unique and incredible people in my life who are not neurotypical.

I also know the challenges of loving and living with people on the autism spectrum, and I am astounded at the strength of a parent who raises four children on her own. I am even more astounded at the strength of a parent raising four children with autism. Your courage and grace make this world a better place. I am sure your children do, too.

Please know you are appreciated, Sherilyn, and that you have the strength inside you to rise to your challenges. Your family is so fortunate to have you at the helm.

<3

 

[SneakyFox]

As a high functioning Autistic that did not find out till he was 30, that he fell on the spectrum(all the academic skills were there so my social difficulties were written off as being a bullied introvert, rather then a mental condition), I can already say that you're starting from a strong place, having that diagnosis early means that you know they're going to need extra help and resources in order to succeed. And getting that help as early as possible makes it easier on them in the long run.

Talk to their schools councilors and see if they know the local 'special needs' focused therapists/psychiatrists if your children are not working with one already. I know on the social front I really needed the skill sets my therapists have helped me (re)learn because looking back on my life I lost 2 jobs and a relationship because I thought I was interacting as a 'neuro-typical' when in reality I was not and missed the signs of trouble. Don't be afraid to see a therapist yourself, you are in avery stressful situation and an expert can help guide you through the emotional turmoil you are in.

Also make sure your children are getting the resources due them from the school district, the district has a duty to accommodate their condition, no matter where they fall on the spectrum

Having firm boundaries and schedules will also help with the acting out, once you get them to buy into it. I don't know how old your children are, but working with them to build a set of routines to help order their lives, taking some of the mental chaos out can help many of us on the spectrum.

As for the Twatwaffle you really need to get him on board or eject him. Acting the way he does from your description runs counter to what both you and the children need to adjust to living with their condition. The extra chaos does not help any of you.

I hope my viewpoint helps and again good luck, being a parent is a challenge but rewarding. I knw my parents struggled with me at times, but they've repeatedly stated that seeing me be a nice person and trying to help others, makes the rough moments worthwhile.

 

[Sherilyn66]

As a high functioning Autistic that did not find out till he was 30, that he fell on the spectrum(all the academic skills were there so my social difficulties were written off as being a bullied introvert, rather then a mental condition), I can already say that you're starting from a strong place, having that diagnosis early means that you know they're going to need extra help and resources in order to succeed. And getting that help as early as possible makes it easier on them in the long run.

Talk to their schools councilors and see if they know the local 'special needs' focused therapists/psychiatrists if your children are not working with one already. I know on the social front I really needed the skill sets my therapists have helped me (re)learn because looking back on my life I lost 2 jobs and a relationship because I thought I was interacting as a 'neuro-typical' when in reality I was not and missed the signs of trouble. Don't be afraid to see a therapist yourself, you are in avery stressful situation and an expert can help guide you through the emotional turmoil you are in.

Also make sure your children are getting the resources due them from the school district, the district has a duty to accommodate their condition, no matter where they fall on the spectrum

Having firm boundaries and schedules will also help with the acting out, once you get them to buy into it. I don't know how old your children are, but working with them to build a set of routines to help order their lives, taking some of the mental chaos out can help many of us on the spectrum.

As for the Twatwaffle you really need to get him on board or eject him. Acting the way he does from your description runs counter to what both you and the children need to adjust to living with their condition. The extra chaos does not help any of you.

I hope my viewpoint helps and again good luck, being a parent is a challenge but rewarding. I knw my parents struggled with me at times, but they've repeatedly stated that seeing me be a nice person and trying to help others, makes the rough moments worthwhile.

Hi! It most certainly does. It's great to hear the perspective of someone who's on the spectrum!

Each of the kids have a psychiatrist, and they have behavioral health rehabilitation services. My 10 year old daughter's is on hold because I just had to admit her into a intensive inpatient behavioral facility for 28 days. She is an Aspie, and already has the system down pat. She has all sorts of canned answers that she knows when to pull out and use to her benefit, and is probably one of the most manipulative little shits I've ever met. She doesn't like me very much right now. Oh well, she can build a bridge and get over it.

I also make sure to get the kids out into the community to work on social and life skills. It is more of a challenge with my oldest son and one of my twins, as they're "textbook Autistic" and are also mentally retarded. My eldest is now beginning to do some grocery shopping independently and with cues is able to order deli meat. I make sure that he speaks to people appropriately and to at least look at their forehead or nose. If he wants to buy something with his own money, he has to make sure it's something that is really important, and if he has enough money to purchase it. I also offer choices to him of something that he might be saving money for vs. what he's wanting to teach him that impulse shopping isn't the best thing for him to do. Most people take doing such things for granted. I see the little things as major accomplishments, and I couldn't be more pleased and proud of not just this one, but all four of my monsters.

I've been battling with the school district ever since my eldest was three. He's now 15... They finally admitted after FOUR YEARS that one of my twins needs to be in a more restricted environment...well, duh. Quite frankly, if he had been "typical", he would have been expelled or at the very least, suspended several times over. A once happy boy is now a behavioral nightmare. Twatwaffle and I are seriously considering filing a lawsuit. He should have been placed in an approved private school at the end of first grade.

I don't know why they still don't listen to what I say. I'm always right when it comes down to what we need to do for all four of my children and what is going on. It's really frustrating.

I try to keep things as routine as usual, but I will rock the boat and change their schedules/routines up. They have to be able to adjust, because life doesn't allow for the luxury of everything falling into place the way that they're used to.

I commend you for working so hard to learn all of the things that could help you succeed, and I tip my hat to your parents for never giving up on you!

Thank you so much for your comment!

Sherrie