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Pegs

Hi. We have a diagnosis.

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It's really helping me to hear from parents who've BTDT with similar kids who are older than my DS. I'm very grateful to those of you who are sharing and giving me glimpses of the possibilities in the journey to come.

 

Thank you.

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By the way, I figured you were a single parent, but I stopped myself from asking. I figured you would share if you wanted to. Your spelling also told me you were not in the US ;)

You so spectrum!!!

 

I'm in Australia, which means I get to spend time with Rosie here and there. Lucky me. :)

Edited by Pegs
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We just got 8 yr old's disability benefit approval :) Looks like we will be moving forward with some things before the new evaluations.

Great news!

 

If you don't mind me asking, what's your plan for the interim? And why new evaluations (I didn't know this was a thing)?

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I realize now, I probably should have explained this a bit more. I meant it has gotten me in trouble in my professional life, prior to becoming a SAH/ homeschool mom. Let's just say that my attention to detail led to spotting irregularities that some did not like, and leave it at that  ;)

 

I'm hearing you too...

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Mind if I keep coming back to do my processing here?

 

I'm feeling a lot of this tonight:

 

I think it's realistic and affirming to know one's instincts aren't totally off and to feel like your own responses to your child (different parenting choices, etc.) are based on those instincts.

 

 

I'm not sure whether some small part of me was feeling under a bit of pressure to use this new and official information to become Super Autism Parent, but I just realised that I've been parenting DS his whole life, and really, it's all going quite well. It's been a relief.

 

We had a few interactions today where I saw my parenting and guidance reflected in his responses to various challenges, and I thought, Yeah. We got this.

 

Phew.

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Pegs, I follow my own instincts and I am content with that. People can try to pass judgment based on their own assumptions and that's their problem. I live by my rules. I feel sometimes people put pressure on others because they want to feel better about their own decisions. I don't feel that need.

 

The other thing I follow is my research. Like I have said before, I read biographies of adults with autism. There's another reason why I do. I have been researching what made the greatest difference in those that went on to live happy, successful (note, I do not have a NT view of what success means) lives. From what I have seen, it was the loving support from their family. That is what I give my kids first. The knowledge that they have people that care, will back them in their life when needed, and that challenge them with love to help them find their own way in life.

 

I'm not looking to normalize my kids. I'm not normal by NT standards and do not wish to be. I just love and am grateful for the two I have. We have challenges but it's the challenges that make us strong, and I have never been one to shy away from a challenge.

 

This is what I teach my kids.

"Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength." -Mahatma Gandhi

 

Your boy is lucky to have you :)

Edited by Canadian Mom of 2
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So, it will be nice to be able to seek support for him and have people recognise that it's perfectly reasonable because autism! And not just because autistic mother.

 

Hi there, I didn't have time to read through all of the responses, I just wanted to pop in and let you know that I'm in the same boat and I can relate. I'm very mildly autistic and I do worry about professionals blaming my kids issues on my parenting abilities (or lack there of?) I actually worry about this quite a lot. In all honesty, though, I have never once had anyone even remotely suggest that I was doing anything wrong. Quite the opposite, actually. Some of these therapists really probe me for insider information lol, and I'm happy to give it because I know that it's helping the kids on their caseload. 

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Hi there, I didn't have time to read through all of the responses, I just wanted to pop in and let you know that I'm in the same boat and I can relate. I'm very mildly autistic and I do worry about professionals blaming my kids issues on my parenting abilities (or lack there of?) I actually worry about this quite a lot. In all honesty, though, I have never once had anyone even remotely suggest that I was doing anything wrong. Quite the opposite, actually. Some of these therapists really probe me for insider information lol, and I'm happy to give it because I know that it's helping the kids on their caseload.

Thanks for taking the time to stop in and share. This is really reassuring.

 

Hey, want a funny/silly story? When I was being interviewed, they asked a lot about sensory needs and rigidity and the like. Clothing preferences, etc. We got to talking about food. I commented that DS can eat sandwiches so long as they have only one spread on them.

 

Dr: And does he need them to be cut a particular way? For example, always triangles or always squares?

 

Me: Oh, I've always mixed it up a bit to try to avoid that issue. Generally I cut them into tangrams.

 

>_<

 

She paused _ever so slightly_ before writing that one down.

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I thought the rigidity and transitioning testing was a bit weird. Wave a boring toy in a kid's face until he finally agrees to humour you, then take it away and wave another in his face until he finally agrees to humour you. Woah! Definitely autistic.

 

Yet, somehow, in real life, "Ok, we're going to do this now" was met with "Rightio" unless it involved person hygiene, because face washing and tooth brushing were for people with no hobbies. :rolleyes:

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I don't recall seeing much transition testing - or maybe I didn't know what to look for. I expect the ADOS would have covered that?

 

Anyhow. His engaging-people-in-play was hilariously enigmatic. The psych commented to me that he seemed happy enough to be left to play alone for long periods of time, and then when he did prompt her to return to playing with him, he said, "Shall we pwoceed with the game?"

 

Yep! That sounds like DS!

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I don't have children on the spectrum, but I also parent largely by instinct and it seems to work for the most part :)

 

DH and I really take Rosie's first quote to heart (though the Vonnegut version: "sane person to an insane society must appear insane")

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Some kids do need therapies though, which is why it is good to have evaluations, in order to access these services when necessary.

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 (though the Vonnegut version: "sane person to an insane society must appear insane")

 

I can testify to that...

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Indeed, and it can be pretty difficult to reconcile yourself to a society that thinks you're crazy (or at least severely abnormal) and maintain your sense of self without incorporating some of society's disapproval/confusion.

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Some kids do need therapies though, which is why it is good to have evaluations, in order to access these services when necessary.

Yes. I'm trying to embrace the diagnosis as a means of accessing services and support, without beating myself up about the shoulds and shouldn'ts of my parenting idiosyncrasies.

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My last few posts were written on a lighter note. I wasn't looking to offend anyone and I hope no offense was taken. I have deleted them either way.

Edited by Canadian Mom of 2

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My last few posts were written on a lighter note. I wasn't looking to offend anyone and I hope no offense was taken. I have deleted them either way.

I saw your posts and took them in good humour (omgoodness the spelling thing again), but didn't get a chance to respond.

 

I really don't think you have anything to worry about, but I understand your caution. :)

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It is safer to be a DSM approved oddity than an oddity who isn't.

Except perhaps if you're DSM-approved but not medicated. :D

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Some kids do need therapies though, which is why it is good to have evaluations, in order to access these services when necessary.

 

When DS18 was younger and I knew almost certainly he was on the spectrum we didn't push hard for testing and a diagnosis because I just didn't see how it would really help. He got speech therapy and OT and we did just fine homeschooling. So I didn't feel any big need (or certainly no urgency) in seeking a diagnosis. When he got closer to college age, and especially when the anxiety became an issue -- those things made it seem more important. He hasn't really needed any educational accommodations yet (although I do think he likes his smart pen), but it's good to know the documentation is there if he does. And his ADHD cousin did -- she did fine through high school w/o any accommodation, but once she encountered the increased rigor of college there was much scrambling to get the testing done so she could be allowed a quiet place to test and extra time. Having all the testing documentation has made it very easy to get DS18 approved for a private dorm room at college, which he agrees he does need very much.

 

I know there's some school of thought that having an earlier diagnosis is better in terms of qualifying for adult services here in the US, especially disability benefits. And I suspect there's probably some truth in that.

 

It is safer to be a DSM approved oddity than an oddity who isn't.

 

LOL! I think there's a lot of truth to that. Although w/o getting too political I have been wondering a bit after our most recent election here if we did the right thing or made a massive mistake by getting a label put on DS.

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I'm finally able to sit for a proper reply :) .

 

Edited for privacy.

It is why I don't like seeing people pushed into evaluations. Each situation is so different! The level of urgency is determined by the needs of the child and how what he/ she is dealing with impacts his/ her daily life. Also, we, as parents, need our own time to process things. But sometimes I think people forget how long it took them to process their own situation with their own child. Our hindsight is our own, for our own situation, with our own child(ren). It is not fair to stress others instead of giving them the support they need while they are still processing their own situation with their own child. It also troubles me when assumptions are made about the needs of a child, based on a few posts of a frustrated parent. When things are going well, there's no need to post. We tend to post when we need help or are frustrated and need others to help us think through our situation. It does not mean that that particular situation, in those particular posts, represents what the family deals with every single day. Anyway, rambling now :tongue_smilie:

 

Edited for privacy.

I think the best way to find answers for ourselves is by allowing others' experiences to speak to us. I let other parents determine for themselves what from my story may fit their situation and what they think they should do about it. Maybe that is because that is how my brain thinks though :tongue_smilie: I don't know. I process better by reading and taking what applies to me.

I agree with you, that the urgency for getting evaluations will differ from one situation to the next. Obviously, if a child is severely impaired, a parent would want an evaluation as soon as possible, in order to get needed therapies and for the paper trail in the future. That will not be everyone's reality, though!

Edited for privacy.

Edited by Moved On
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Having all the testing documentation has made it very easy to get DS18 approved for a private dorm room at college, which he agrees he does need very much.

 

:thumbup:

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There's also the fact that I'm a single mother of an only child - it's a pretty intense relationship. I have sole care 24/7 apart from a few hours each week, when I go to classes.

 

So, we know each other *really* well. I know how to preempt and accommodate for things which might otherwise restrict DS' access to the world. And on the flip side, he trusts me when I say, "I think it's time to start learning to do abc a bit differently, because that way you'll be able to xyz, and I think you'd really enjoy that! I'll help you. We'll start with something small and manageable, okay? You can trust me."

I am very glad you have this trust dynamic. It is not always easy to establish this kind of relationship with a child who has autism--sometimes they are too much in their own world or there are communication challenges or other things that make this very, very difficult.

 

I have a similar relationship to my son, and even more so when he was younger. We have found that not all of life stays within that box of "things I can teach my child directly" or "situations I can preempt and accommodate." Children also do not all develop at the same time or rate, and that can bring up a host of challenges when develop is accelerated or slowed down in spots.

 

That is not to say that you won't be able to handle things, but my experience is that this kind of relationship was crucial while limited.

 

I also want to note that all parents of kids who are not neurotypical walk a fine line in two areas: accommodating vs. limiting (doing too much accommodation) and scaffolding vs. letting them tumble with too little help. I do think that sometimes a professional can offer additional perspectives or more advice when we need it in these areas. Also, sometimes letting my son be more independent means letting him try skills with others, some of whom are professionals. 

 

Professional help is a tool, just like other parenting tools. The possibility of intervention is neutral, and then a parent has to use it wisely or find a different tool in order for the intervention to be positive. I also felt like I needed to be open to different points of view, different therapies, and then also keep an open mind about how my son's autism can play out. There are a lot of unknowns. We are at a point where he is capable enough that we're concerned people will forget or not realize he's disabled (this happens with people who don't really understand the idea of a spectrum or who reject labels altogether), and then he will be judged or corrected harshly. This is hard for him to deal with, and it can be damaging. It's not unlike when parents say their exceptionally tall or older looking children are judged as older than their age, except that with autism, the issue doesn't go away with time.

 

----------

 

Oops, this was a quoted snippet from Peg also:

I'm not sure whether some small part of me was feeling under a bit of pressure to use this new and official information to become Super Autism Parent, but I just realised that I've been parenting DS his whole life, and really, it's all going quite well. It's been a relief.

 

We had a few interactions today where I saw my parenting and guidance reflected in his responses to various challenges, and I thought, Yeah. We got this.

________

I think we all need those moments, and I am glad things are working for you! 

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I was just coming to type up a thoughtful and measured reply, when someone started mowing next door. Now I am completely frazzled and irritable! I'll try again later. ;)

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First off, I don't think anyone said that therapies should be avoided or that they are not necessary. Pegs herself has mentioned OT and CBT (as I recall without looking back). Pawz4me's son also received the therapies he needed as a child and his mom is ensuring he is getting the accommodations he needs, as needed. We, from my end, are also looking for services, as needed, for our own two.

 

Another thing to consider is that parents with autism have one more thing over those without autism. They can relate to what their child is dealing with and help support him/ her as needed.

 

I can't see how someone can foresee the future to guess what supports will be needed, so I am a bit unclear what we are saying here!

 

I found this from Temple Grandin's website:

 

"TURNING POINT

 

There is no single turning point in life. There were a series of important events that helped me to develop. First of all, I got excellent early educational intervention and mother was always pushing me to do new things. The second step was having a series of mentors, such as my aunt on the ranch, my high school science teacher, and good people in the livestock industry.

 

The third essential step for me was antidepressant medication that stopped my constant anxiety and panic attacks. I started taking them in my early 30’s. Many stress related health problems went away when I took low doses of antidepressants. Many people do not need medication, but for me it was essential.

 

My first book was titled, “Emergence†and that title really explains my life. I gradually developed and emerged. If you have an older child or adult who is not progressing, it is never too late to start. I met a 20-year-old who had not learned to drive and he had been too sheltered by his family. When he got a job away from the family, a friend taught him to drive and he got his license. People on the spectrum have to be “stretched†to keep learning new skills."

 

Pegs, another good book that ties well with the last sentence in the quote above is, *A Loving Push* by Dr. Temple Grandin and Debra Moore.

 

Also, on therapies from the same website:

 

"DELAYED SPEECH

 

You need to start working with your child now. Many scientific studies show that early educational intervention improves a child’s prognosis. The earlier the teaching starts, the better. The worst thing you can do with a young autistic child is nothing. Letting your child watch TV all day is really bad. If no services are available, you need to get volunteers to work with your child. Grandmothers and college students majoring in education are good sources of volunteers. Use the social networks you have in your church, synagogue, mosque, or community group to locate people. Some people have the ability to work with children with autism and others do not. A young child with autism should have a minimum of 20 hours per week engaged in one to one teaching. An effective teacher will be able to achieve more language, better turn taking skills, and better social interaction. The child’s brain needs to be kept engaged with the world.

 

Suggestions for Teaching

 

Teach your child words. When you give him/her a snack, name the food when you give it to him/her. For example, say “apple†when you give your child an apple.

 

Play lots of games that involve turn taking. If the child is spinning a penny, turn it into a game of taking turns. Children’s board games, such as Candyland, are good for teaching turn taking. When a child gets older, use board games that are suitable for an older child.

 

Limit TV and video game playing to one hour per day.

 

Sing nursery rhymes and play other interactive children’s games. Always try to encourage social interaction and eye contact.

 

Use lots of positive reinforcement, smiling and praise. Encourage the child to give you a smile.

 

Use each mealtime to teach social interaction and manners. Structured meals where a child learns social skills are part of a 20-hour week program.

 

Make sure your child gets plenty of exercise. Exercise has a calming effect. Cut excess sugar out of their diet. Make sure he/she has a good breakfast that contains lots of protein such as meat, eggs, dairy or peanut butter. Sugar loaded foods such as Pop tarts or powered sugar donuts are bad. Eating protein, especially at breakfast, really helps one to be calmer, focused, and less likely to get headaches.

 

 

 

WEEKLY THERAPIES

 

No. Research shows that a minimum of 20 hours a week of one to one teaching is most effective. However, one hour a week is enough time for the professionals at the school to be mentors and trainers of parents and volunteers. You need to observe the sessions with the professionals at the school so they can work with your child more effectively. Further information is in the answer to Question 1."

 

Note how she stresses that she is talking about *educational interventions*.

 

Here's the link:

http://www.templegrandin.com/faq.html

Edited by Canadian Mom of 2

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From Stephen Shore's story:

 

"In the interim, my parents provided what we would today refer to as an intensive, home-based early-intervention program that emphasized movement, sensory integration, music , narration, and imitation. At first, my parents tried to get me to imitate them— especially my mother. When that failed, they started imitating my sounds and movements, which made me aware of them in my environment. Only then were they able to pull me out of my own world and into theirs. In my experience, the most important educational implication has been that before any significant teaching can happen , a trusting relationship has to be developed between teacher and student.

 

I Took Watches Apart and Put Them Back Together

 

At age 4, I started dismantling watches with a sharp kitchen knife. When my mother saw me demonstrating this skill, she began to provide me with additional watches, radios , and other things to take apart. Also, my parents both sat with me to make sure I got these things back together again in good working order! It was not hard for me to reassemble these mechanical devices. However, it was an important lesson my parents imparted —that if I took something apart, I should be able to put it back together again. My mother did most of the caretaking and “early intervention,†because in those days , it was the father’s responsibility to work and earn money . Additionally , I think my father was pretty confused in terms of what to do with me. However , he still loved and supported me the best way he knew how."

 

Found in this book:

Different . . . Not Less: Inspiring Stories of Achievement and Successful Employment from Adults with Autism, Asperger's, and ADHD

https://www.amazon.com/Different-Not-Less-Achievement-Successful-ebook/dp/B00TZN9PZY/ref=sr_1_1?ie=UTF8&qid=1490402367&sr=8-1&keywords=Different+not+less

 

Just one of the many stories of adults on the spectrum living happy, successful lives after being supported by loving, caring parents that supported and challenged them. Temple Grandin, of course, is another.

 

On Stephen Shore from Autism Speaks:

Stephen Shore Shares His Life on the Autism Spectrum at Atheneum

https://www.autismspeaks.org/family-services/nantucket-autism-speaks-resource-center/news-and-press-releases/stephen-shore-shares

Edited by Canadian Mom of 2

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Pegs, your concerns about your parenting approach being questioned by professionals has had me thinking. Yes, I ponder things a lot! I have been wondering if that was ever a subconscious concern for me. I don't think it was though, but I guess it had a lot to do with the fact that I was not a single parent. It may have been a concern if I was. My main concern, thinking back, was that I didn't want anyone to make my boys feel like there was something wrong with them that needed fixing. I didn't want anyone to make them feel that they have to be like everyone else to be happy. That’s what I still fight against to this day. Only now I know that as a parent I have the right to make the decisions on the therapies. Hubby and I have the last word. I definitely *get* your concerns much more clearly now though!

 

Mm. It's been a pretty big deal for me. I'm young-ish, a sole parent, I have multiple disabilities, I have some quirks to my parenting and the way I interact with DS (which totally work for us both!). Oh, and I'm homeschooling. ;)

 

And he's not exactly the poster child of normal and well-adjusted-to-a-sick-society, yk? So it's not like I can point to him and say, "Look, everything I'm doing is working! See my success!"

 

It was super dooper validating for me that the evaluation ended with, "So basically, just keep doing what you're doing."

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That was the end result of the first evaluation with my 13 yr old, then 9 1/2. Developmental ped also told me they both would most likely have fallen through the cracks in our educational system had I not been homeschooling them.

 

Yes, hearing that is definitely validating :) Even more so considering the challenges you are also personally facing. Kudos to you!

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My replies in bold:

 

I am very glad you have this trust dynamic. It is not always easy to establish this kind of relationship with a child who has autism--sometimes they are too much in their own world or there are communication challenges or other things that make this very, very difficult.

 

It's something I've been very thoughtful and intentional about. I understand that in many ways we got lucky that DS and I seem to have fairly well compatible styles of communication.

 

I have a similar relationship to my son, and even more so when he was younger. We have found that not all of life stays within that box of "things I can teach my child directly" or "situations I can preempt and accommodate." Children also do not all develop at the same time or rate, and that can bring up a host of challenges when develop is accelerated or slowed down in spots.

 

That is not to say that you won't be able to handle things, but my experience is that this kind of relationship was crucial while limited.

Yes. I expect that as he grows and matures, DS will work more with a professional to identify the areas in which he needs to be stretched, and will figure out how to go about this. And I will be about for support, or I will stay out of the way, or I will offer encouraging words, or... well, whatever is needed I suppose. I think I'm well placed to both support and stretch him for now, but I recognise that I will not always be the primary person in this role, and that DS will take more ownership of it over time.

 

Thank you for emphasising this. I like the way you've phrased it. 

 

 

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Developmental ped also told me they both would most likely have fallen through the cracks in our educational system had I not been homeschooling them.

 

I am really hoping that something along these lines makes it into our report!

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I am really hoping that something along these lines makes it into our report!

He did not put it in his report. I read the full version recently. He never recommended that we needed to put them in school in his report, either. What he shared in his office would not be something that would normally go on a report, so I did not expect to find it there.

Edited by Canadian Mom of 2

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