<lisajceledon@...>

My pediatrician had me fill out a screening questionnaire and based on my answers she said my son (he's 26 mos) is 'high-risk' for having an Autism Spectrum disorder.  She recommended that he be evaluated through our local regional center.

I don't know whether that is actually a beneficial thing to do, and I wanted to ask for input here.  The reasons my pediatrician gave all related to ensuring that he's 'on par' with his school peers and is able to get the help he needs to do well in school (I didn't mention that school isn't the plan).  I got some information from an OT friend and my aunt (my cousin has asperger's), and all of their input was also based on increasing school success.  I didn't ask specifically if there were any not-school related benefits.

I don't see how an evaluation or diagnosis will help me be his mom, or him be himself-- Could it be helpful in ways I don't know or aren't thinking about, that aren't related to school?  I am seeing the process as being only stressful and potentially unnecessary.

I'm feeling a little emotional about it as well- mostly about how to answer people who inquire about our choices- especially after spending a few recent holidays with several of those inquisitive people- so that's got me wavering back and forth a bit - feeling doubtful about my own judgement, is what I think it is. 

I appreciate any guidance that would help me put my feelings and reality back into perspective, and focus on helping my son have a happy, peaceful life.

<jenna.bergendahl@...>

One benefit of the screening is that, if diagnosed as on the spectrum or needing other early intervention, your son would be eligible for free services from the school district (like occupational therapy, speech therapy or anything else you might desire for him based on his needs). This is regardless of whether or not you actually enroll him in school. These professionals will actually come to your home and conduct the therapy or services there, which is much more comfortable for a child. It is all free to you. However, you can't really get it unless you complete the screening. You also aren't required to use the services. It might be worthwhile to see what is out there and decide if you are interested.

This is based on what I know as a daycare provider/former preschool teacher, NOT as the parent of a child who receives services, so someone else may have another perspective and more information.

I wonder if people keep emphasizing "doing well in school" because they don't have another way to define what a successful, healthy child does. You have a broader definition than they do! However, you might have the same goals for your child--just different ways of talking about it.


Sending positive thoughts your way!

Sandra Dodd

-=-My pediatrician had me fill out a screening questionnaire and based on my answers she said my son (he's 26 mos) is 'high-risk' for having an Autism Spectrum disorder. She recommended that he be evaluated through our local regional center.-=-

Were the questions about behaviors and progress? Or about family history and vaccinations? :-)

Hospitals want to cover their butts, for one thing. Sometimes their advice isn't about what's good for patients so much as what's good for their legal departments, so relax about their motives, if you can.

YES! They assume school. They project a problem out 20 years and it is magnified.

-=-I got some information from an OT friend and my aunt (my cousin has asperger's), and all of their input was also based on increasing school success. I didn't ask specifically if there were any not-school related benefits.-=-

"Benefits" meaning advantages, or "benefits" meaning programs or assistance? Or benefit of having the evaluation, I think you mean.

-=-I don't see how an evaluation or diagnosis will help me be his mom, or him be himself---=-

Labelling rarely helps, and I think it always hurts, whether it's a good label or a "bad one."

Please read here, some of the best parts of previous discussions:

http://sandradodd.com/words/without

http://sandradodd.com/labels

If there's something about a child that other kids would be mean about, or that being around other children would be problematical, then it must be that NOT being stuck with other children is an advantage. When he's older and has more practice and time to think and consider what he sees around him, and feels, then there will be opportunities for him to be with other kids for half an hour, an hour—not seven hours a day, miles from his mom.

Sandra

Joyce Fetteroll

On Dec 28, 2013, at 12:04 PM, <jenna.bergendahl@...> <jenna.bergendahl@...> wrote:

> I wonder if people keep emphasizing "doing well in school"
> because they don't have another way to define what a successful,
> healthy child does.

Very very few people recognize a difference between a child and a schooled child. How could they? Even most homeschoolers are doing some form of school. (At least 80%.) For nearly everyone, helping a child do well in school is exactly the same as helping a child.

> However, you might have the same goals for your child--just different ways of talking about it.

To sit still for several hours a day? To listen to what isn't interesting? To give answers to questions he isn't curious about? To set aside his own needs until it's convenient for everyone else? To police himself to act appropriately in a group setting for 6+ hours a day?

Even for average kids, school isn't a natural environment for children.

Joyce

Sandra Dodd

-=-, if diagnosed as on the spectrum or needing other early intervention, your son would be eligible for free services from the school district -=-

MAYBE.  There are people here from a dozen nations, and even if it were only U.S., that would be fifty different states, but you're talking about school districts.  In some places, those policies are up to the district.  There is no federal law, and there is no international law.  

If everyone could try to qualify statements with "might" or "once I saw" instead of "is" and "will" that would be helpful.  Not just to this discussion, but to the clarity of thinking in individuals.

There could be circumstances in which a parent who says "I cannot provide for this child's needs" would be saying "I am not qualified to homeschool," and the special-ed teachers and social workers and judges would say "True!  Put him in school."  That could conceivably happen, in some places, in some circumstances.  

More likely is that the specialist would create in individualized plan and direct the parent to live according to that set of rules, and if the parent chose not to, the door is open for an outside agency to ask why not.

Sandra

chris ester

On Sat, Dec 28, 2013 at 1:22 PM, Sandra Dodd <Sandra@...> wrote:
 

>>>>>-=-, if diagnosed as on the spectrum or needing other early intervention, your son would be eligible for free services from the school district -=-


MAYBE.  There are people here from a dozen nations, and even if it were only U.S., that would be fifty different states, but you're talking about school districts.  In some places, those policies are up to the district.  There is no federal law, and there is no international law.  <<<<<<
There is a federal law in the US, but every state (at least) interprets this law (the right to a free, appropriate public education) differently.  With budgets being cut, here is Maryland many homeschoolers found themselves cut off from speech and occupational therapies that had been provided by the school system before.  When they asked about the change, they were told  bluntly that the school system was going to use it's resources to improve the "outcomes" of the students that they basically get credit for from the feds....

>>>>>>There could be circumstances in which a parent who says "I cannot provide for this child's needs" would be saying "I am not qualified to homeschool," and the special-ed teachers and social workers and judges would say "True!  Put him in school."  That could conceivably happen, in some places, in some circumstances.  

More likely is that the specialist would create in individualized plan and direct the parent to live according to that set of rules, and if the parent chose not to, the door is open for an outside agency to ask why not.

Sandra<<<<<<
 
Navigating any public system takes a level of mindfulness, if you will.  You have to be educated about what the law is and what the local practice is.  There is always a wide range of differences.  This is where hooking up with local parent groups can help.  You may want to just ask questions, without "over" sharing about your personal situation until you know the group.  Well meaning people have caused problems for homeschoolers (even if they are homeschoolers themselves) because a family didn't do things in a traditional fashion or blindly accept the recommendations of the "experts".  

It helps to learn the lingo of the professionals (which are the people who are paid to work with children--it does not necessarily mean that they are more knowledgeable or useful in your child's life) so that you can clearly communicate with them your reasons, concerns and desires, it also tends to earn their respect.  Which helps everyone to remember that you are the expert about your child.  Something that many parents forget.   

You may also just want to wait.  If your child qualifies for an evaluation now, then he would probably qualify for one in the future, if you feel that there are questions that you need answered to help you be the best mom to him.  I like that you framed your question in the context of you being his mom and him being happy.
chris


<plaidpanties666@...>

>>I don't see how an evaluation or diagnosis will help me be his mom, or him be himself-- Could it be helpful in ways I don't know or aren't thinking about, that aren't related to school?<<


One of the possible benefits of an evaluation is that if your child is having trouble, or you're having trouble figuring out how to communicate and help him, it gives you directions to look in, ways to find resources and ideas. But you don't necessarily need an evaluation to do that. It can be helpful in a general way to read about kids with sensory issues, kids with anxiety issues, kids who need a lot of time to adapt to change, kids who need a lot of help with transitions... as a way to understand things that perplex you about your kid. 


For instance, it didn't occur to me that my kid might have sensory issues until I read about them - and then things that didn't seem related before fell into a pattern. And knowing that she might have sensory issues allowed me to look at the world around her a little differently, evaluate what sorts of things might be stressful or distracting so I could help her better. 

At the same time, it's helpful to think about your own reactions. Will more information actually help you or will it skew the way you see your kid, by filtering everything through a particular lens? Will it change the ways family and friends see your child and treat him? Often kids with labels are subject to More rules and teaching as other adults try help "fix" your kid. 

All that being said, people categorize and label other people, including children, regardless of diagnoses. Sometimes it's better to have a diagnosis as a kind of shield against those other labels. Sometimes it can help You see your kid in a kinder light than another label. 


<plaidpanties666@...>

>>There are people here from a dozen nations, and even if it were only U.S., that would be fifty different states, but you're talking about school districts.  In some places, those policies are up to the district.<<


And depending on local laws, having a "special needs" kid on the books can affect what you can legally do in terms of homeschooling - it can set you up for more state oversight or intervention. So before you get an evaluation, check the local homeschool laws. 

<plaidpanties666@...>

>>You may also just want to wait.  If your child qualifies for an evaluation now, then he would probably qualify for one in the future<<

Not necessarily - and that's a good reason to wait, too. Sometimes what looks like "impairment" is a stage of uneven development. 


And some evaluators are specifically paid to generate diagnoses - they have a short time to come up with something they can bill for and that absolutely skews their perspective. 

Lisa Klein Weber

My oldest son almost certainly would be labeled with Asperger's if he were in school. He was kicked out of preschool at 3 and we went to first homeschooling, then unschooling. An asperger's label would not help us at all. I have had a couple of people tell me he should be tested or he should be labeled but that is just because that's what they did.  It is not helpful to him in his current life. I sometimes tell him that he is more sensitive than most people, or different than many people in X way, because I know it will affect him when he is older (I am the same way and probably would also be asperger's labeled if they were doing that sort of thing in the 70s) but the actual label of Asperger's is probably not helpful outside of school.  In fact, I have a friend who uses it as a way to label everything her son does - which I hate. She will upload pictures of him doing something quirky and hashtag it #aspielife or something. I really don't like it when she does that. His whole life is going to be about him excusing or writing off everything he does because he has Asperger's. 
Lisa

Pushpa Ramachandran

I find the term "High Risk" for ASD an interesting one. What does that mean? Does that mean that there are risk factors involved that determine that ASD is "looming" in the immediate future? 

If so what are those "risk" factors? Would an evaluation determine if there are things in the environment or home that are "adding" to those "risk" factors?

The best early intervention I have seen is one where the mom really has a good sense for her kid and is just needing another head to brainstorm certain situations that could be changed to make that particular child's life better. So if she can't figure out "how to help him ask for cookies", the mom and the specialist will brainstorm a bunch of ideas that will help that happen.(e.g usually a simple change like keep cookies in a place where he can easily get to them, or in a clear jar where he can see them, or offer him a cookie in a special plate.". That would be a good scenario. 

There are early intervention plans that have also "quickly" led families into GFCF diets, genetic testing, etc etc which leaves children frustrated and families exhausted and decision plans being made out of fear of xyz or specifically fear of future denial of services.

It might be helpful to learn how to describe things in a way that "bridge the gap" in terminology if you are finding yourself questioned about specific skills. So instead of saying "He doesn't use words", it might be helpful to really think about how he let's you know what he needs and how you figure it out. And explain it that way to the doctor/specialist. That might be also possibly helpful to think logically if really if there was a problem to begin with anything or situation.. (e.g crying for cookies) (again as an example) and see if there might be creative ways to problem solve those situations.





On Mon, Dec 30, 2013 at 1:36 AM, Lisa Klein Weber <lisakleinweber@...> wrote:
 

My oldest son almost certainly would be labeled with Asperger's if he were in school. He was kicked out of preschool at 3 and we went to first homeschooling, then unschooling. An asperger's label would not help us at all. I have had a couple of people tell me he should be tested or he should be labeled but that is just because that's what they did.  It is not helpful to him in his current life. I sometimes tell him that he is more sensitive than most people, or different than many people in X way, because I know it will affect him when he is older (I am the same way and probably would also be asperger's labeled if they were doing that sort of thing in the 70s) but the actual label of Asperger's is probably not helpful outside of school.  In fact, I have a friend who uses it as a way to label everything her son does - which I hate. She will upload pictures of him doing something quirky and hashtag it #aspielife or something. I really don't like it when she does that. His whole life is going to be about him excusing or writing off everything he does because he has Asperger's. 
Lisa


Sandra Dodd

-=-All that being said, people categorize and label other people, including children, regardless of diagnoses. Sometimes it's better to have a diagnosis as a kind of shield against those other labels. Sometimes it can help You see your kid in a kinder light than another label. -=-

Meredith, do you mean "sensitive" is a shield against "bratty" or "whiney"?
"Asperger's" might be a shield against "anti-social" or "rude"?

With grandparents who are pressuring parents to put a child into group activities?
With strangers at playgrounds?

For relationships between parents and children, I think it's nice if every child is given the leeway and options and privacy or opportunities he would be given if he DID have labels, no matter how un-labelled or downright "normal" he might seem, because everyone is tired, confused, "over-sensitive," anti-social, sometimes. Learning to give children more options might keep some chidlren from needing to be set aside as "special."

Sandra

Sandra Dodd

-=->>You may also just want to wait.  If your child qualifies for an evaluation now, then he would probably qualify for one in the future<<

-=-Not necessarily - and that's a good reason to wait, too. Sometimes what looks like "impairment" is a stage of uneven development. -=-

YES!  Some things that are "disabilities" for young school children are entirely gone by the time the child is 12 or 15—it just took him or her longer to grasp, figure out, practice some skill or ability.

Sandra

Joy Mottram

Certainly some issues/sensitivities can be 'grown out of' or learned to be managed, over time. Depending on where you are though, evaluation isn't going to be always available down the road.
Here in the uk, dyslexia is not covered by nhs post 16 years, making assessment/diagnosis and help much more difficult to access. I have a friend currently struggling to get the help she needs. Being assessed as a child takes half an hour.

Also, while a 'label' isn't necessary for me to parent my disabled children differently, it does open many doors that make their lives, and mine, easier. On a road that is more bumpy than it would be without the condition, the label is useful, and worth having IMO.
My son with aspergers finds knowing that he is neurologically different to the majority of people he will meet, a helpful, comforting thing. Without *knowing* that he has x,y,z differences, and having coping mechanisms in place that we've accessed by looking at material specifically made for people with ASD, life is a scarier, sadder thing for him. 

Not saying everyone will feel the same, at all. But I can see for my eldest it's great to know what's going on. And for me, having support with my younger sons more complex issues, has been a great help.

Sent from my iPad

On 30 Dec 2013, at 03:59, Sandra Dodd <Sandra@...> wrote:

 

-=->>You may also just want to wait.  If your child qualifies for an evaluation now, then he would probably qualify for one in the future<<

-=-Not necessarily - and that's a good reason to wait, too. Sometimes what looks like "impairment" is a stage of uneven development. -=-


YES!  Some things that are "disabilities" for young school children are entirely gone by the time the child is 12 or 15—it just took him or her longer to grasp, figure out, practice some skill or ability.

Sandra

<bragdontina@...>

Here's a second YES to that!!! I have a 10 yr old boy with a diagnosed genetic duplication which affects his motor skills (fine and gross motor) as well as his speech. He was in speech therapy for five years and currently still goes to outpatient physio/ot one day a month every other month. I have gotten some ideas to help him like his pencil grip, strengthening his core muscles through things I would not have thought of (eg: laying on our stomachs to do a puzzle instead of sitting at a table) but once he turned about 7-8 yrs old I noticed a change in their approach with him to more academic and I suspect even some subtle assessment of the academic. It's like that there was whole suceess in school thing popping up and steering him in that direction happening even though they know we are homeschooling (haven't broached the unschooling word with them). I do have mixed feelings about his therapies at times because of this. I find I need to consciously center myself mentally to take what I know to be true of MY OWN CHILD and his likes and desires and resist that deficit/"we're going to fix this" mentality. It is much more easy to do this now, but when he was 3 and starting interventions it was a lot harder when I was very early on in my unschooling journey and developing my confidence and views. That would be my one caution to the original poster regarding therapy and evaluation...to be aware that they look through school colored glasses. I do recall his genetics appointment...and the dr saying that his train would be going to all the stations, just not in the same schedule as the other kids (she was saying this to try to make us feel better if I recall). My unschooling mind gets rankled a bit at the thought of stations, lol, but I recalled that when I saw Sandra's post above. I must say as well that I am so thankful for unschooling in all of this....for keeping his self esteem intact and for it helping me to see him for the whole sweet boy he is and not a list of shortcomings to bring up to snuff. In that way it's been lifesaving for us.

Sandra Dodd

-=-Here in the uk, dyslexia is not covered by nhs post 16 years, making assessment/diagnosis and help much more difficult to access. I have a friend currently struggling to get the help she needs. Being assessed as a child takes half an hour.-=-

But why is she struggling?
What help does she need?

Assessment for a child in school *might* give him a break from harsh grading.  Probably not.

Assessment of a child who is NOT in school, saying that he's dyslexic, doesn't change anything except to make him think something's wrong with him.

I wouldn't do it.

-=-Also, while a 'label' isn't necessary for me to parent my disabled children differently-=-

You have disabled children, though?  Do you think of them that way, and treat them that way?  You've used the term in writing to strangers all over the world now.  

Unschooling works the same for all children.

-=-Not saying everyone will feel the same, at all.-=-

But the question is not "how do you feel."  It's "will this help the family be better at understanding and moving toward radical unschooling and peaceful parenting."

Sandra

Sandra Dodd

These questions don't need to be answered.  they were to make the point that "struggle" and 
"need" will dissipate with unschooling.


But why is she struggling?
What help does she need?

Don't struggle; relax.
Find ways to live with your children as they are, not to need help to.... have them declared to be as they are.

Sandra

chris ester

I grew up in a family full of differences--some diagnosed, others not... 

In our family, everyone had traits, or characteristics, instead of diagnoses.  

While some would call us "hyper", we loved the fact that we didn't need a lot of sleep and moved a lot.  My parents did not expect my brother and I to sit still.  We learned to be quiet and respectful, being polite was strongly valued in our family.  Everyone said their please and thank yous to everyone else.  There was no dividing line between adults and children when it came to respect.  We were loud, and emotional and often communicated in a way that was very emphatic.  People who sense things keenly tend to see everything as important...

But, no one called us disabled, or differently abled, we were just different, not different bad or different good, just different.  Different from each other, different from other families, but we were happy at home (not at school--different was NOT valued) and got things done.  

So, if having a professional (who is paid to do what they do) make observations (that is after all, what an assessment is--observations couched in a particular set of values or a certain framework) about your child and sharing them with you (and possibly gov't officials), then go ahead.  It may be helpful, it may not.  Stressing about it is hard not to do, but try not to by remembering that who your child is now will be different in a day, a week, a month, and certainly in a few years.  Take what they say with a grain of salt, they really don't know any better than you what will happen in the future.  They only have a slightly more educated guess than you do, or at least they want to believe that they have a more educated guess than you do, they probably have a fancy vocabulary to use when stating their guess.

My best recommendation is to find out what the consequences could be if you get the assessment and don't follow up on any (or all) of the recommendations that are made.  Is it just dismaying for those who believe that they are experts, or is it possible that they can cause problems for your family?  I am sure that there are support groups who can fill you in on what your rights are in saying "no"--I would want to read it for myself.  
chris


On Mon, Dec 30, 2013 at 3:03 PM, Sandra Dodd <Sandra@...> wrote:
 

These questions don't need to be answered.  they were to make the point that "struggle" and 

"need" will dissipate with unschooling.


But why is she struggling?
What help does she need?

Don't struggle; relax.
Find ways to live with your children as they are, not to need help to.... have them declared to be as they are.

Sandra


<wraparoundjoy@...>

-=-Here in the uk, dyslexia is not covered by nhs post 16 years, making assessment/diagnosis and help much more difficult to access. I have a friend currently struggling to get the help she needs. Being assessed as a child takes half an hour.-=-


**But why is she struggling?
What help does she need?**

She is currently doing a degree to retrain in her chosen field. Getting support that any other GCSE examinee with a dx of dyslexia would get, is the support she needs.

**Assessment for a child in school *might* give him a break from harsh grading.  Probably not.

Assessment of a child who is NOT in school, saying that he's dyslexic, doesn't change anything except to make him think something's wrong with him.

I wouldn't do it.**

In my experience (which is mostly kids not in school, as mine never have been, and many of their friends are also HE) the child has more than just 'grading' issues. Dyslexia is more than misspelling. It's an entire different way of interacting with the world. Kids who've been diagnosed have said PREVIOUS to diagnosis that they think something's wrong with them. They're more likely to NOT feel that way after understanding where their differences are. (Again, in my experience. Imagine kids in school have it differently, I know my severely dyslexic husband did).


*You have disabled children, though?  Do you think of them that way, and treat them that way?  You've used the term in writing to strangers all over the world now. *

I have two children who are on the autistic spectrum. The younger is disabled, amongst many many other things that he 'is'.
I don't think of him simply as 'disabled' no. I do think around him and treat him as disabled, in as much as he needs extra help with every aspect of his life. He cannot pass stool without help (that I've received adequate training to give to him, so as not to actually damage his body, something I'd not have without diagnosis). 
I have no problem with having shared it in writing to anyone. Anyone who ever meets him will know without me having to say a thing. His disabilities, as much as his abilities, are part of who he is. He has been unschooled as much as his brother and sisters. It works for all children, though I'm not sure it's the same for them all, I may be misunderstanding you there.


*But the question is not "how do you feel."  It's "will this help the family be better at understanding and moving toward radical unschooling and peaceful parenting."*

Quite, for some a diagnosis would not help, for some it really does. Of my dons many therapies there are some I've had to decline because they did not work for us, being prescriptive, or reward based, or top down. However, there have been many times where we've both gained understanding of issues that we needed for our peacefulness. 

^_^ Joy


Sent from my iPad

Sandra Dodd

-=-She is currently doing a degree to retrain in her chosen field. Getting support that any other GCSE examinee with a dx of dyslexia would get, is the support she needs.
-=-

So in the UK, for test-taking assistance, it would help to have a diagnosis before the person is too old for national health to cover it?
Then a younger child could wait until teen years and nearly-test-time to get that diagnosis, perhaps?  
And by then might not need it?

-=- Dyslexia is more than misspelling. It's an entire different way of interacting with the world. Kids who've been diagnosed have said PREVIOUS to diagnosis that they think something's wrong with them. They're more likely to NOT feel that way after understanding where their differences are. (Again, in my experience. Imagine kids in school have it differently, I know my severely dyslexic husband did).-=-

Your husband was in school.

My dyslexic dad was harmed greatly, in school, by dyslexia, where he was made to write right-handed even though he was (as many dyslexics are) a natural leftie.  But he was great at math and science, though writing the numbers and the answers down was difficult, with his wrong hand, and he grew up to be a welder, mechanic, building contractor.

My dyslexic husband was harmed less, in school, because it was the 1960's and  not the 1930's.  He's always been musical and became an engineer.

My dyslexic son was harmed zero, with unschooling, and never ever heard the word "dyslexia" until he was 14 or so, and then he didn't hear it from me.  We discussed it and I said sure, probably, and he said makes sense, and that was that.  

Each individual learns to read in the way he learns to read.  He figures it out.
Each individual learns to write in the way he learns to write.  He will figure it out.  

Sandra


Sandra Dodd

-=-She will upload pictures of him doing something quirky and hashtag it #aspielife or something. I really don't like it when she does that. His whole life is going to be about him excusing or writing off everything he does because he has Asperger's. -=-

And even if he blossoms and steps outside that "condition" at some point, and does something social/political and public and impressive, it would likely be described as "Remarkable for an Asperger's case" or something.   That prevents him feeling whole and intact and individual.  

Sandra 


Sandra Dodd

-=-Here's a second YES to that!!! -=-

I wish you had quoted the part you were big-YESsing.

Quoting entire posts is a problem, but not quoting anything at all can be a bit of a problem, too. :-)

-=-It's like that there was whole suceess in school thing popping up and steering him in that direction happening even though they know we are homeschooling (haven't broached the unschooling word with them). I do have mixed feelings about his therapies at times because of this.-=-

You could ask them to be less academic.  You could probably mention things he's doing that they could help with in a more occupational-therapy way as they would asn adult, and less in an academic-preparation way as they might be doing assuming he's "in a grade" and needs to keep up with that "grade."

-=- when he was 3 and starting interventions it was a lot harder when I was very early on in my unschooling journey and developing my confidence and views. That would be my one caution to the original poster regarding therapy and evaluation...to be aware that they look through school colored glasses.-=-

If you had it to do over, would you still want that "early intervention"?  Were you already unschooling another child at the time he was three?
(Ignore that question if you don't want to think about it, or if you just don't want to take the time to write it... I'm curious, but you can totally pass.)


Sandra



Jennifer Smith

I am adopting, through our county, a little girl with downs syndrome. I am required to do early intervention therapy with her. She just turned a year old. We don't refer to it in our home as early intervention. We just say, "Hector is coming over to play today!!" Hector is a very sweet man who shows us ways of getting her muscles to work so she can eventually sit up, crawl, walk, talk, etc. Once the adoption is final, we will then have the option of having Hector over to play or not. Right now my daughter does not mind doing the therapy. It's just playtime. However, I have been doing my own playtime with her that I know works better than what he does with her. It's because I know her on a daily basis. I can see that her tummy needs to be stronger for her to sit. Previously, she did not want to sit or roll over or crawl. She was happy to be in her forever home being kissed and cuddled and bonding. Now, at 1 year, I see that she is wanting to sit up, so I help her. Just as I did my other children. She's not on the counties timetable of mastering being able to talk by 3 or crawl by 1 or being toilet trained by 5 or 6. She is allowed to be on her own little happy timetable. And happy she is. I've gotten books from the library that I read at my leisure on gross and fine motor skills. It's mostly good information for me to file away in my brain and use if we need or want to use it. She does have a clinical diagnosis of downs. But I don't need that diagnosis, nor did I ask for it. I just stay available to her and help her when she wants it. Because her bio mom did some things when she was pregnant with my daughter, I expect that later down the line a doctor might like to diagnose her with A, B and C. But unless it's detrimental to her health, I don't need that diagnosis. She had 2 holes in her heart and major pulminary issues that we do treat medically because without medical intervention she would die. She is on oxygen 24/7. She may not need it later, but I know she needs it now.

~Jen

Lisa Celedon

<<However, there have been many times where we've both gained understanding of issues that we needed for our peacefulness. >>

This may be where I'm getting tripped up...
Though I'm still not sure that any clinical advice given through a narrow frame of reference would offer helpful help.

For example, something my youngest does is reenact movie scenes (which, unlike what was suggested to me elsewhere, I do not think is a 'problem')- he can't talk but acts out the motions and mimics the dialogue sounds and yeah acts it out (like, he may be a charades force to reckon with one of these days)-- when he does this, he will act out parts like hitting or grabbing or even choking someone. I always intervene when that happens (otherwise he's pretty gentle).
I have learned some of his routines (it helps that I watch everything he does) when I know it's coming, I can gently prevent any harmful actions while still being fun and receptive of what he's doing.
Sometimes though I can't tell what it is, and I don't know its coming, and he hurts me or my four year old. Also sometimes he seems totally calm and is playing with us and out of nowhere (to me) he starts grabbing or hitting his brother.
It's been happening more and it totally catches us off guard. I've adjusted some things- I don't move more than an arms length away when they're playing together so that I am there both to intervene quickly and to see if I can track what might be triggering it (so far though, I still have no clue).

This really upsets my older son when it happens, and I wonder if I'm missing something because I don't know exactly what's going on. There might be a simple answer I'm overlooking. But there also might not be.

But, after reading what everyone has said, and reading the links, it seems pretty clear that while a diagnosis and whatever assistance or therapies go with it might open some doors, it would close lots of others.

My cousin has Aspergers and even as a teen I could feel how the way my aunt talked about her and about it made it into a really small box- even though it was a box they decorated with rainbows and stickers. It seemed to make 'opportunities' out of what were really limits- externally placed limits. And even her 'limits' - would they be seen as such if those traits/behaviors didn't interfere with how school is supposed to work?

And, so far, my son doesn't have physical issues that are interfering with what he wants to do. Indeed, nothing about his behavior or body or brain seem to be interfering with what he wants to do. There are things that people have told me he shouldn't be doing. "he shouldn't be leading you around like that and using your hand as a tool to get what he wants. He needs to learn to ask for what he wants."

I don't get that. I don't want specialists telling me what my son should be doing to get the most out of his life. I want to pay attention to him and learn what he needs to enjoy his life and how I can help make it happen. And how to help my sons foster a relationship with each other that they both feel good about.

I've been told that in CA it's a much harder process to do evaluations and such after age 3, and once a child is 3 you're going through the school district if you want free services.

But it seems if there were ever something he wanted to do and couldn't, for whatever reason, there would be ways to get specific help. Like private OT or something. Even things like someone suggested- pencil grip- if a person had never been told pencil grip was a necessary thing to have- what might they do differently? What other choices might they have pursued instead? (and I totally think that as computers and devices have come way into prominence, pencil grip is something a person could probably live their whole lives without. Unless maybe they wanted to attend a formal dinner and had to hold a fork. In which case they might arrange to have some preparation and training/practice before hand).

I don't mind opening doors for my son, but I want to be very very careful about closing them.


Lisa C

Sent from my iPhone

BRIAN POLIKOWSKY


We have friends , who are unschoolers, that have a son that probably would have been diagnosed with Aspergers. I think that even my son would have been diagnose with something had he been in school.
But just like our friends we knew we would be unschooling and that there was no need for it. Instead we look at our individual children and who they are and what works for them and what does not, what are their needs and how can we be better partners.
The problem with *some* diagnoses and labels is that the parent no longer is looking at their child individually and uniqueness and instead the parent is looking at a set of pre-determined traits that  are supposed to be fixed, helped, discouraged, changed.

If your child needs more peace and less  noise stimulus that is what they need. Or you can help them manage it. Be their partner. If a child is going to school there is very little you can help them , so those kids go into therapy so they can cope with something they and the parents have no control over. At home, when you are unschooling, you can be their buffer, help by being close, removing them from situations that you know will overwhelm them, create a safe space.

I know my friend's son has learned to remove himself from something that is overwhelming him. He has learned because he has been able, with the help of his family, to get away from the situation that is getting to them. When you are in  school a child cannot get up and get out of a classroom that is driving him mad!

In real life a person can remove herself from situations or chose not to go into them if they are overwhelmed. 
If a family has chosen to unschool there is no reason, most of the time, to get a diagnoses and label. That those not mean you cannot read about certain traits your child has and research ways to help them better. It does not mean you cannot look into what can help your particular child. If the diagnoses is used like that then it is not that bad.

What I have seen happen is that parents get their kids diagnosed and they stop looking at them . They look at my "asperger" child.  They are no longer John or Mary.
What I have seen is that parents start to fear their children will never learn to........... unless they................
They forget to see their unique child , and every child is unique, and they see what they cannot do, don;t do like they are supposed to, and what they don;t know and should because that is how other kids are.

It seems that the OP;s child is not able to communicate as well as he probably wants. He may feel frustrated and act in frustration because he cannot yet communicate what  he wants and needs.

Language will come. My brother did not talk until he was 3. But he was tuning guitars at 7 and writing poetry and songs. He did not read until he was 11 but he could fix pretty much anything. My mom took him to Therapy after a Montessori school said they did not want him there. He grew up thinking there was something wrong with him. IT really damaged him and his self worth.  My mom wishes she had know about homeschooling then. School was terrible for my brother.
It was not until he was in his early 20's that he  started to heal some. Unfortunately he died at 24 when his life was starting to be better and happier.

There maybe kids that feel better about having a diagnosis.  I wonder why they feel so different. Are they being compared? Are they being told they are not acting normal?
where they in school? Everyone is different.
I used to Volunteer with the Special Olympics. I never treated those people any different than I treated the next person. They are just who they are.  I don;t need to know their labels and diagnoses.

http://polykow.blogspot.com/2009/04/in-my-36-years-of-life-before-having-my.html

So if I know my child and I look at him as the person he is I don;t need anyone telling me he is "insert label here".
I can always research and ask people how they help their children who has sensibility to sounds, textures or other things.
I can do the same about his need to be home.

 I can look at my child and see if he is happy, engaged and learning .
Not learning a set of skills someone decided it was important but learning something  because that is what is driving him.
 I can model and coach him. I can be his partner  and help him.

Our unschooling kids have all the time to learn they need. There is not set deadline for them. There is not a set goal someone came up with that needs to be achieved by a certain age.
 
They can read at 6 or 16.

 Look at your child. Does he need you more? Can you pay attention to see what is he trying to communicate? will some sign language help him?
 And don;t forget that they grow fast. They change a lot.  My kids are not how they were 6 months ago.
They have grown, matured, learned  and changed tons and so will your child.



 
Alex Polikowsky
 
 
 


Sandra Dodd

-=-The problem with *some* diagnoses and labels is that the parent no longer is looking at their child individually and uniqueness and instead the parent is looking at a set of pre-determined traits that  are supposed to be fixed, helped, discouraged, changed. -=-

And some look at the list (in a book, on a website) of the traits that their exceptional child will have that are glorious advantages, and they claim them, whether their child has them or not.  "Dyslexics are great at drawing and music and engineering!"

But is that individual child interested in any aspects of those things?  Maybe not.  Again, the parent has looked at a book instead of at a child.

Sandra


Christine Nakra

There are so many great responses here and I haven't read them all but love Sandra and Alex's responses.
Before taking my kids out of school, I used to work as a speech pathologist with children your son's age for similar dx.
I just wanted to tell you that you can definitely help your child yourself and at home what any therapist can do minus the drive, time and $.
IF your child has difficulty with communication there is a "Hanen" program out there called "More than words".
It's really written for parents and is a great guide for parents to understand how to meet your child in communicating exactly where he/she is at the present moment and go from there in a natural progression. The therapists are just going to try to give you some tips and suggestions. You can do this yourself.


Christine




Pam Sorooshian

It is called, "It Takes Two to Talk" and looks really great. They have a guidebook and a dvd. It emphasizes paying a lot of attention to what the child is actually interested in, giving the child a lot of time and not rushing or pushing him/her to speak, and listening carefully to words and sounds and facial expressions and body language. It tells parents to stop talking so much and listen more - which is what I've observed that a lot of parents of young children need to do.

On their website they have a really nice example - a mom is trying to get a child to pay attention to herself in a mirror and the child is struggling and not responding as the mom wants. But then the mom takes a second to "observe" and realizes the child is interested in her sock which is falling off. So the point is - the attentive mom will be interacting with the child about the sock and her naked foot and so on - what the child is being attentive to is what they should be communicating about.

That is so NOT what happens in speech therapy offered by schools. I took my nephew to speech therapy twice a week for a school year and sat in on it many times. It had absolutely nothing to do with his interests - it was all about which sounds he was supposed to work on. Yes, they tried to make it fun with games, but he wasn't fooled - it was still a trick to try to get him to keep trying to pronounce words that he was unable to pronounce correctly. 

-pam


On Wed, Jan 1, 2014 at 11:33 AM, Christine Nakra <cksteiner1122@...> wrote:
IF your child has difficulty with communication there is a "Hanen" program out there called "More than words"


<bragdontina@...>

Sorry Sandra, I was typing on a new tablet and thought the quote was going to be attached, and my paragraphs would appear indented as I typed/spaced them...guess not!!!

 

As far as dealing with therapists, in the last 3 or 4 visits they have toned down a bit as they have seen I have nicely declined their repeated offers to give me names of educational psychologists to "assess his learning style". I have had a past contact to me by my provincial homeschool liason officer to clarify things on my reporting forms (initially a nasty/threatening sounding answering machine message about refusing to approve us) that left me so incredibly stressed,  which I eventually cleared up with the help of my local association....and I also don't imagine that I would likely find a psychologist that is open to unschooling, as I know academically there are areas they would look at like math in which he won't meet their "yardstick".  So...I am very hesitant to have that sort of assessment done and maybe something eventually going back to homeschool authorites. I just try to word things differently for them I guess, for example,  I have managed to deflect stuff like their repeated asking "so have you tried some of those typing websites we gave you" with emphasis on how we are just trying a bit here and there (he hates being timed) but yes his typing/writing ability is growing as we are emphasizing typing in "real time" on messageboards he enjoys, or he writes a grocery list for example when he wants to without the pressure of being timed in it.   (I certainly don't practice worksheets with him!)

 

Since you asked, yes, he does have an almost 14yr old sister who we have also unschooled from the beginning but who does not have his challenges.  Some of this intervention stuff I could have picked up on my own just through research, but yet some of what I have been shown by them has been useful as well...so I am really on the fence if I would have done this all over again.  In some ways, yes, in some ways no, as I also could see as he got older he could see ways he was "different' from the kids around him and maybe he was picking up something subtly.  We have always just tried to stay positive and emphasize what he could do.

 

 If I wasn't such a new unschooler when I started, I would have felt more confident in the beginning and less doubtful if unschooling helped a child with "special needs".  Looking back I can see that unschooling has been a godsend to him compared to things I see with kids of some of my relatives who have been severely labelled and intervened with.  Yet, I haven't totally resolved my feelings about it all, though, as I still don't have the guts to just walk away from the little therapy we are still doing, as I have really gotten as I said some useful advice. I do plan to talk to his therapists about how much longer this continues, or what is the end goal or what do they consider their job "done". 

 

It just would be better if all the underlay of school wasn't involved!!!! And if I did do this over again, I wish I would have had the knowledge that therapy tends to be gearing up for school and to be more prepared for that.

Sandra Dodd

-=- I also don't imagine that I would likely find a psychologist that is open to unschooling, as I know academically there are areas they would look at like math in which he won't meet their "yardstick"-=-

Depending where people live and what's required, there are some professionals here who might be able to (for a fee, and after some skype time with you and your child) provide an evaluation IF NECESSARY. Just if for some reason it's mandated or a problem comes up with a child who has been labelled.

http://sandradodd.com/issues/therapy

-=-yes his typing/writing ability is growing as we are emphasizing typing in "real time" on messageboards he enjoys, or he writes a grocery list for example when he wants to without the pressure of being timed in it. -=-

Nowhere in school was there any "real time" typing. There are speed tests, but that's transcription—copying something that's already printed out. Once that was a more practical skill than it is now. :-)

But writing in real time is writing AND will bring "typing speed" up.

Sandra