Fourth edition of TWTM, asking for your help...

[Susan Wise Bauer]

Dear folks who frequent the Learning Challenges board...

 

I so appreciate your contributions to the "Fourth Edition" thread on the General board.

 

I'm going to attempt to address a number of your concerns in the next edition. As you know (better than I do, probably), dealing with the multiple issues and their degrees of severity that y'all discuss here is probably a whole separate book. But I do want to provide much better guidance for parents who are struggling to understand why their kids react & learn as they do. 

 

I think it might be very useful to have a chapter about "When to suspect that you need more help." Would some of you be willing to post brief accounts about the point at which you realized that your kids were not just "learning differently," but needed intervention in order to cope? What were the clues or behaviors, how did you come to that realization, do you now think you should have realized earlier, what would you suggest that other parents look for? My hope is that we'll get a survey of a number of different experiences with different kinds of difficulties--much more powerful than me just giving my list.

 

If you post here, I'll assume that it's OK for me to use your story. I will not use any identifying information, and I will ask you to read the finished chapter and then sign off on my use of your material--if you don't like what I've done with it, you can always tell me to delete it (and I will happily do so).

 

And if I use your story I'll send you a free copy of the fourth edition. :)

 

Let me know what you think of this idea, and thanks.

 

SWB

[FairProspects]

The simplest explanation is just that teaching my children to read was *not* easy. I was homeschooled myself at the beginning for several years and I still remember the moment reading clicked for me at age 4. I was reading Frog and Toad with my mother and all of a sudden I coud READ. The words made sense and I read twenty pages and looked at my Mom in astonishment and excitement. That type of moment was exactly what I wanted to share with my boys.

 

However, in our experience, after 2 years of explicit phonics instruction from ages 4-6 (some of it with Abeka, the same way I was taught) and despite being read to from birth and hearing massive quantities of language, there was still no click. Every single sound had to be sounded out each time it was encountered. Ds could easily remember all the sounds but he could not make any sense of them and put them together in any meaningful way. I was so frustrated I enrolled in in public K  (even though by age, ds could have qualified for 1st grade). Clearly I could not succeed at this homeschool gig. Ds would then come home from public K and ask why everyone else understood and why they were so quick to read when he was so slow. At 6 years old, he was verbalizing that he knew something was wrong.

 

The school refused to test despite my concerns saying that children needed to be 2+ years behind for them to test for learning issues and in K, it was impossible to achieve that milestone. They told me I would have to wait until he was in 2nd grade, and then if he still read at a K level or below, they could think about some intervention. As a former teacher and partially homeschooled child, that was not acceptable and I knew there were options outside the PS, so I pulled ds out of the middle of K and sought testing in the private sector.

 

Ds is incredibly bright, but is both dyslexic and dysgraphic. The neuropsychologist gave us very specific recommendations that have led to early language skills remediation and while he will always be dyslexic, ds is working on or above grade level in all areas. He has won a science fair and is pursuing several private opportunities of interest to him. He didn't have to struggle for years with reading or develop an incorrect concept of self-worth because he was behind, and I'm so grateful we caught the warning signs early and pursued testing "even just for peace of mind" as dh and I said when we got on the waitlist. Testing and remediation has completely changed ds's educational trajectory for the better.

[mamashell]

nm

[Butter]

When Cameron was 6, he spent 6 months trying to learn the sight word "the."  Yes, the word the.  I knew that wasn't normal, but everyone said he was probably just a late bloomer and, honestly, I didn't want him to have a learning disability, so I let my concerns go.  At 7 and then 8 he still wasn't reading even though he really wanted to.  He has always had a great love of books and wanted me to read to him all the time.  He was frustrated that he wasn't learning to read and I was frustrated and wondering when he would suddenly get like everyone assured me he would.  In the back of my head, though, something kept telling me this wasn't normal.  This went beyond "late bloomer."  Just before he turned 9, someone said to me, "What's the worst that could happen?  He could be illiterate."  That wasn't okay with me.  That statement hit me so hard.  That is when I knew I needed to know what was going on.  I googled signs of dyslexia.  With the exception of one or two, Cameron had them all.  I decided I wanted to be sure of what was going on with him, so we had him tested (through the public schools - great experience).  They said he had dyslexia (I wasn't surprised) and severe dysgraphia (I had never heard of it until then).  At 12, upon retesting in a different school district (and another great experience), his diagnosis was changed to orthographic processing disorder (which looks like dyslexia and dysgraphia combined).  Knowing there really was an issue helped so much.  I had direction and was a lot less frustrated trying to teach him to read and write.  I do wish I hadn't listened to the "late bloomer, don't worry about it" camp but instead listened to my own instincts when he was 6 years old.  Knowing earlier would have saved so much time and frustration for both of us.

[GoVanGogh]

Sent to me via email from a former board member asking me to share - 

 

(snipped)

 

I did not know that twice exceptional children are so very good at masking, accommodating, or otherwise working around so many of their difficulties that it makes it much harder to see the need for intervention.  

 

Thank you so much for sharing this.

 

We received a late diagnosis of mild (atypical) cerebral palsy. We are currently waiting on our neuropsych report, but have already been told that our child is likely twice exceptional. Every therapist and doctor that has evaluated or treated him for the past three years has been amazed at how well he masks and works around his disability.

 

For me, as a homeschool mom, the red flag was that his strengths just kept rocketing off the charts, while his weaknesses never budged, no matter how many programs we tried or ways we attacked the weaknesses. I told my husband and pediatrician for years - that discrepancy between the strengths and weaknesses just kept widening, the academic development was just so uneven and getting more and more uneven the older DS got. (DS was premature so his development had always been uneven and somewhat expected but, when it should have been coming together, it was getting worse.)

 

In our case, DS started reading on his own, with no direct instruction, at a young age. He also started writing the letters of the alphabet without instruction. He is extremely visual so reading and knowing how to write were easy for him. Alas, six years after he first wrote his name, he still wrote in the exact same manner. I repeatedly asked our pediatrician about DS's inability to write in a fluent manner. He always told me DS was a late bloomer. I kept countering with, "I don't think late bloomers learn how to read and write on their own, now excel in reading but just stalled out on writing." What our pediatrician missed for years, an occupational therapist correctly diagnosed in the first five minutes of her evaluation. 

 

We had a long and messy road to diagnosis. I would say: Moms need to follow their gut feelings. And dads need to step out of the way. (My DH, like many others, fought against testing for years.) I finally told my husband that I don't go into his office and tell him how to do his job, so he needed to step back and trust that I had given this my best effort and I now needed outside assistance.

 

I have really found the homeschool community to be extremely lacking in services or assistance for learning issues. The one exception is this board. The people here are amazing. But, in general, when you say you have a boy that can't sit still and can't write (mechanics, not composition), the homeschool community (in my experience) gathers together in singing the praises of waiting it out, allowing the child to bloom in their own time. All that does is waste valuable time and allow the chlid to become more and more anxious over thier inability to learn what is expected of them.

[8filltheheart]

Susan,

 

I am not sure the direction you want to go and I feel like a complete failure in this dept, but my biggest regret in all my yrs of parenting is not recognizing that our Aspie ds was not going to progress into adulthood like our other children. It is hard to process that someone with an extremely high IQ and academically strong can't function as an adult. He is disabled by his anxiety. He cannot handle many things that most older kids do without any thought at all.....answering the phone is too stressful bc he doesn't know what to anticipate when the other person starts speaking. Jobs that require thinking on your feet, coping with unexpected changes, filling in missing directions on your own, or working at a fast speed (essentially most jobs) are too much for him to cope with.

 

I guess my point is that with some disabilities, academics and learning are not the actual disabling issues. Simple life functions are. If I could go back and do it all over again, I would not focus on college prep academics with him. I would focus on vocational skills that could lead to skilled labor positions over unskilled labor. I would spend more time exploring vocational career options as high school courses. For our ds, high school courses were non-threatening. Actual jobs cause him to shut down in anxiety. We could have used high school to his advantage to help build job skills in an environment where he wouldn't judge himself as an employee, but a student. Approaching them as subjects and activities wouldn't have been as threatening from his perspective. Now, as an adult, he stresses even more with change.

 

Back when he was 12-14, I no longer remember when exactly, I had one psychologist say to me, "It won't matter what he knows if he can't hold a job." Back then I was mortified that he even suggested that our ds wouldn't be able to hold a job. Our ds was a strong student. He was smart. But, those words haunt me now. We have expended exorbitant amts of energy and money trying to help our ds, but that single sentence sums up everything we did wrong.

[Crimson Wife]

Please include in any discussion of reading difficulties a recommendation for getting a full audiology exam. It is important even if the child has had previous normal ones.

 

My SN child had apparently taught herself how to lip-read to fill in the gaps as her hearing deteriorated but that's not a strategy that she could use with phonics primers. She was mixing up consonant pairs and I was concerned that she might be dyslexic. So at her triennial Individual Education Plan evaluation, I pushed the school district to run a test of phonological processing. The psychologist said that first we needed to get an updated audiology exam. That's when we discovered she had profound hearing loss in the high frequencies. She was mixing up the consonants because she physically couldn't hear the difference between them.

 

Most struggling students have normal hearing and vision, but I learned the hard way that symptoms of a physical disability can sometimes get chalked up to a LD.

[imagine.more]

Like Crimson Wife, our daughter was such an adept lip-reader that she was not diagnosed as moderate-profoundly deaf until nearly 8, and the doctors are certain she lost her hearing sometime between ages 1 and 5, possibly as a result of health issues she had in infancy. Her school recognized that she was struggling in Kindergarten and First Grade but somehow everyone missed the hearing impairment until she had been in school and struggling for 3 years.

 

Anyway, when Ana was placed with us in 5th grade she had been attending public schools and was receiving A's and B's on her report cards. Although she had some documented dyslexia and hearing impairment and was described as a slow learner we were naively sure that it was simply the result of a poor upbringing and maybe the public schools dropping the ball. I still remember the day she was sitting at home and trying to read a baby board book to my 3 year old and she stumbled over half the words. I actually had to leave the room and cry because I was so distraught to realize this otherwise normal, happy 11 year old was functionally illiterate. I set about trying to help with Ordinary Parents Guide to Teaching Reading and it was clear very early on that it was just not sinking in with her. It took a lot of digging to find the right diagnosis and remediation plan but once we did things started clicking for her and she began making real, measurable progress. It took going way back to skills most kids intuitively pick up in preschool to make progress, but once we did it was amazing how phonics started making sense for her. 

 

Our biggest sign for when Ana is over her head academically is the blank stare, refusing to work, or the crying/throwing a tantrum. This is not a child generally prone to tantrums, but invariably every time I ask her to work too far above her ability it causes her to complain, refuse to work, cry, and usually ends with her stomping off to her room. My biggest advice to parents would be if your normally compliant, happy kid is crying it's time to put the curriculum aside and reevaluate. It could mean the child needs more time, but don't waste years waiting for a magic age of maturity to arise where multiplication makes sense to them....go ahead and look into possible underlying causes early. Either your child doesn't have issues and you can proceed knowing you ruled that out, or she does have underlying problems preventing her from making the progress she could be making. 

 

 

[mamashell]

nm

[Pen]

edited:

 

I think the key to knowing that something is not as it should be and that an inquiry needs to be made as to what is going on would be that there is a discrepancy between the child catching on in different areas for the particular child, or a discrepancy between the child catching on and other children doing so. It is not that all children would be expected to be average, but if a child is not functioning in an average way compared to other children, or has areas where compared to him or herself function is significantly better and worse, I think it would be worth looking into what is going on before the child starts feeling him or herself to be "stupid," or starts to "fall behind," or the parent starts to get frustrated. If one finds out that all is fine, that could then be a relief, but if not, in general the earlier remediation is started (on anything) the easier it tends to be, the less gap between what the child can do and what the child wants to do there is likely to be, and the less depression or acting out or other possible reactions to frustration is likely to have also set in. Also, most likely, the earlier the intervention, the more plastic the brain will still be. I think the wait and see, or wait until 2+ years behind approaches that is typical in schools is a terrible disservice to children. I think that as soon as a parent suspects a possible problem, if things seem more difficult for a particular child than one would expect, try to look into it. I do not mean that a 3 year old who isn't reading or a 6 year old who isn't ready for Latin is probably having a learning challenge--those children probably really are just not ready. But a 6 year old who is struggling with simple phonetic words or the alphabet, or a 4 year old who cannot grasp a ball--things that seem behind typical development for a certain age whether intellectual, physical or emotional--these to me are now red flags, not necessarily that something IS wrong, but that it is time to start figuring out if something is wrong, and more importantly to start figuring out what can be done about it.

[Guest]

.

Edited May 10, 2016 by Guest

[Crimson Wife]

 

most likely, the earlier the intervention, the more plastic the brain will still be. I think the wait and see, or wait until 2+ years behind approaches that is typical in schools is a terrible disservice to children. I think that as soon as a parent suspects a possible problem, if things seem more difficult for a particular child than one would expect, try to look into it. I do not mean that a 3 year old who isn't reading or a 6 year old who isn't ready for Latin is probably having a learning challenge--those children probably really are just not ready. But a 6 year old who is struggling with simple phonetic words or the alphabet, or a 4 year old who cannot grasp a ball--things that seem behind typical development for a certain age whether intellectual, physical or emotional--these to me are now red flags, not necessarily that something IS wrong, but that it is time to start figuring out if something is wrong, and more importantly to start figuring out what can be done about it.

 

I agree with this. We got told "oh, she's young, just wait & see" twice when it turned out there WAS something seriously wrong. First was with the speech & language delay that led to the diagnosis of autism. The second was with the reading struggles that led to the discovery of her hearing loss. If I'd waited until 3rd grade when the school district wanted to do dyslexia testing, she could've potentially missed out on 3 years where she needed hearing aids. Think of how much language development goes on between ages 6 and 9 and it's frightening that might've happened had I not been afraid to be that "pushy parent".

 

[Susan Wise Bauer]

Susan, perhaps you would get a lot more people willing to share their family's story if you were to collect them via email. While the stories in your book may be anonymous, some people are well known on the forums and may prefer not having their story traced back to this thread and their forum name. Just a suggestion anyway.

 

 

That is an excellent point--thank you.

 

If you'd prefer to share privately, please message me and I'll give you an email address.

 

To those of you who've already shared: I have tears in my eyes. Thank you.

 

SWB

[Guest]

.

Edited May 10, 2016 by Guest

[Guest]

.

Edited May 10, 2016 by Guest

[Butter]

Some may feel that a diagnosis is not necessary when the child compensates so well. Everyone has the right to their own opinion of course and all should be respected, however, not ever knowing what is wrong can lead the child to feelings of isolation in the future. They will never truly know why they can't fit in. Like 8FillTheHeart shared, it's their future that is at stake here, and how well they can function and adapt to the real world as adults.

 

This is true not just for kids on the spectrum so I think this should be emphasized.  Cameron was already naturally coming up with ways to compensate for his dyslexia by the time he was diagnosed at 9.  He was, however, starting to feel "dumb" and like he'd "never learn" certain things (his words).  Knowing there was something really wrong and there was a reason his little brother, almost 5 years younger, was catching on to reading faster than he (Cameron) was made such a positive difference in his opinion of himself.

[Targhee]

I do hope that aside from obvious learning challenges such as dyslexia and ASD that you allow for different learning styles in the 4th edition.  Below I share the story of my oldest, but my middle two children are also not sequential learners and if I were to follow TWTM recommendations we would be stuck on narrations and math facts until they were 12 or 14.  Their learning styles are more global than analytic, and more random than sequential.  Even without LDs these middle two struggle with analytic tasks like narration and sequential tasks like math facts.  That isn't to say they don't learn them, but they certainly don't learn them first and at the same age/time as others.  I do believe a good deal of students would be better served and able to accomplish more with their education if their learning styles were recognized and worked with.

 

 

 

I first read The Well-Trained Mind in 2004, when my oldest child was just 2 years old, and my second a newborn.  It occurred to me very early on that we should homeschool, but I was completely unfamiliar with it, aside from a couple kids I knew in high school who had ben homeschooled k-8.  The stories of Jessie and Susan, the framework for a classical education, and the listing of resources in the book were so important for helping me understand what I needed to do, even from that early stage.  Thank You.

 

I am a very structured thinker, linear, sequential, and TWTM just made sense to me.  By the time my oldest was 3 and had picked up CVC word reading on her own I was anxious to start helping her learn to read.  It didn't take long for me to discover that this child is not a linear thinker; she does not move from parts-to-whole in an orderly fashion.  Yet, she was still capable of amazing things.  She was reading on her own, and learning more and more without help. She was at 4 computing addition sums in her head without reference objects (e.g. fingers) or pictures and without a lesson in math of any kind.  She had a wealth of factual knowledge that she absorbed through reading, watching, and listening.  She utilized an expansive vocabulary for a child her age.  And yet, she had trouble fastening buttons, lacing shoes, holding a pencil, forming letters, and she would at times melt into a puddle of tears when the outcomes she had anticipated didn't materialize.  Her development was so dissimilar to the progression described in TWTM.  As time went on we tried using the approach described in TWTM, sometimes with success, but more often we were beyond the framework in understanding and ability in one area and struggling to function at all in another.  We worked hard on narrating - this was key, this was backbone to the grammar stage student in every subject - but she couldn't, she just didn't understand what was expected of her no matter how many times I explained or modeled it made no sense to her. She could answer comprehension questions and even make connections between the current passage and previous passages, but could not summarize.  She spoke clearly and intelligently, but her writing limited and simple and her penmanship was horrible.  She took hours to complete work that it was suggested would only take 20 minutes.  She understood math so very well, but repeatedly failed timed drills and could not remember her math facts.  I had alternately chalked it up to willfulness (in my desperate moments of frustrations), or to needing more practice with simpler tasks (which only made her feel stupid and incapable).  I read books about learning styles and about asynchronous development, and tried to apply these to the child in front of me. But she also became relatively more reserved than her age-mates, speaking less and taking much longer to respond.  It wasn't until she was in 4th grade, and her gifts and abilities could no longer fully compensate for her difficulties, that we had evaluations done. My daughter was found to be twice exceptional (2e), both incredibly gifted and having ADHD (inattentive) and a language-based learning disability.  While this is something she will likely have to work to manage her entire life I do wish we would have done evaluations sooner, so that we could have scaffolded the first 5 years of school and learning and avoided much of her self-conscious and anxious feelings.  To those who say "I don't want to label" or "We're waiting to see if he grows out of it" I recommend getting evaluations done.  There is power in being able to name something, and once you have defined what that something is you can go about addressing it with greater efficacy.  The evaluation is not a summation of what your child is, but it is a tool in helping your child become what it is he wants to be.

[Jennifer-72]

The fact that our son had ASD was the reason we choose to homeschool. In recognizing when it might be time to get some help, I wanted to share one of the most helpful epiphanies that I have had raising ds10. It is simply distinguishing between "doesn't want to" and "can't". Often, I would think maybe ds just doesn't like <insert any commonly liked childhood activity here>, but really his displeasure, avoidance or lack of interest in many of those activities was because he currently couldn't do those things. I think that it is very natural for parents to default to the "doesn't want to" answer since we are all trying to respect our children's individuality, but a child's play is the foundation for all of their learning and it merits investigation if your find yourself thinking that often.

 

I know asking that question and breaking down what I thought were the barriers or lacking prerequisite skills for ds to enjoy certain play/activities has made for a much richer and fuller childhood for him and has done wonders for his overall development.

[Guest]

.

Edited May 10, 2016 by Guest

[Guest]

.

Edited May 10, 2016 by Guest

[prairiewindmomma]

SWB, your message box is full. 

[kbutton]

SWB, your message box is full. 

 

I am finding this to be the case also.

[Pen]

On p.626 of 3rd ed. (and btw, I think this section's existence should be easier to find in index and maybe somewhere more toward the front and prominent in the book also) where you deal with learning challenges, I would say that the part that most does not fit with what I have experienced with my son is the idea that more time needs to be spent at each stage, and then once mastered one can move onto the next stage.  

 

The typical "grammar" stage classical ed. learning stages least fit for my son.  Memorizing, for example, remains very difficult as he heads toward high school age and stage, as do penmanship, spelling, grammar etc.--but "critical thinking" came early for him and was and is a strength.  The suggestion in paragraph 3 to take each stage much more slowly to some degree equates with what was happening with him in public school where he was put at the slow-kids' table, having not mastered the alphabet when others were reading already, and increasingly feeling that he was stupid.  While perhaps at home one could avoid the group shame idea of slow-kids' table and comparisons to others, nonetheless, for children like my son they need to be able to progress not necessarily with the same material in the same order but just much more slowly, but perhaps to do it differently entirely and marching to a different drum beat than either the typical public school or the typical ideas of development in WTM.  

 

This does not necessarily mean that "classical" in some sense does not apply.  It may mean that some of the 12th grade Great Books have been read and appreciated and many levels of Balance Benders done, while the alphabet, or whether August will be the next month after July, are still a bit hazy.

 

Possibly this means that mentioning the existence of the possibility of "2E"--twice exceptional students where one aspect of them may be struggling, but other aspects may be average, and still others advanced all at the same time.

 

 

 

[Terabith]

I bought and read the first edition of TWTM when it came out, more than five years before I had my first child.  It resonated in a profound way, and I vowed to use it with my future children.  I had also been a reading specialist in my pre-kid life.  I taught my oldest how to read fairly painlessly around 4.5.  Catherine had always been asynchronous.  She spoke in sentences before a year, listened to books for hours, used words like "soporific" in casual conversation at four.  She knew all her letters and principal sounds by eighteen months.  She could rhyme like a champ and identify initial and final sounds in words by two.  I was convinced academics would be a breeze for her.  I was shocked she had not spontaneously learned to read when I taught my older daughter.  (Catherine was three at the time.)  Yet at the same time, she still scribbled at four, rather than drawing pictures like the other little girls in her preschool class.  She couldn't learn her address and phone number.  She couldn't write her name.  Not only did she not spontaneously read at three, she couldn't learn at four or five when I tried to teach her explicitly.  Everyone told me there was nothing wrong.  Then they told me she was autistic.  (She wasn't.)  Then they finally said she was highly gifted with a slew of learning disabilities and a processing speed in single digits.

[Crimson Wife]

One thing that I was thinking about today is that there's a fear out there that unscrupulous clinicians will misdiagnose a healthy child as a way of drumming up business. It has been my experience that clinicians have long waiting lists and they're triaging.

 

My DD got discharged from physical therapy after 8 weeks when it became clear to the PT that therapy wasn't really needed. The clinic had a long waiting list of kids who needed therapy way more than my child.

 

Are there still misdiagnoses? Yes, but they tend to be misidentifying the child's issue or saying everything's normal when it's not.

[Pen]

eta: Also I think it would be helpful if in sections on reading, math (maybe other subjects also) you had a sentence which indicated that if a child is not making progress, perhaps after trying two reasonable programs in each, then reading the section on Learning Challenges at page ____ is suggested.  

 

re p. 52 3rd ed.  

 

That a child may be reversing p's and q's in 1st grade and not have dyslexia, but just be developing normally is quite true.  But there are those of us who will think, "My child is not making progress on learning how to read, but (and this may still be the thought going into 2nd grade or 3rd grade, and is also a misconception that teachers in school have) I guess since he is not reversing  p and q  or d and b, the problem cannot be dyslexia."  But it could be.  Reversals do not necessarily indicate dyslexia, and the lack reversals do not necessarily indicate the absence of dyslexia. I think that should be made clear.

[Guest]

.

Edited May 10, 2016 by Guest

[Guest]

.

Edited June 22, 2016 by Guest

[happycc]

For some reason the word intervention makes me shudder because we have had lots of intervention. I see it as using different strategies. 

 

Anyways, some really early clues that somethings were not quite right with some of my kids:

 

1)Stopped pointing or never pointed noticed this by age 1.5yrs

2)Stopped waving or never waved by 1.3 yrs

3) Never babbled by 1.5 yrs, mamama, babababa

4) Couldn't stop touching things, constantly having to pull hands back and even then, hands went out to grab, touch again and again etc even in dangerous situations by 1.5yrs

5) wandered away from the family, group like at parks, tries to escape house, walks in the middle of the street, doesn't stop when when you scream stop or call out name  1.5yrs

6) rolled cars back and forth and played with other toys less or just focused on one aspect of the toy 1.4yrs 

7) not really talking in full sentences by three, one word or just phrases 3yrs

8) Not looking at what you are pointing at 1yrs old

9) Not showing interest in surround. Just wandering around and can't focus on one thing for more than 3 secs. 1.5 yrs

10)Not talking 2yrs

11) Can speak, but never spoke to anyone outside of the family age 8yrs.

 

This is the time to get hearing tests, vision tests etc and get an assessment through regional center or something place like that. 

Be aggressive with early intervention. Better safe than sorry. I have had two kids suffer because I took the wait and see approach and meanwhile they were sinking in deeper and deeper depression. People would get mad and frustrated with them including myself because I did not want a diagnosis and did not take the intervention seriously and as a result they learned that they were bad.  

 

With each of these kids, basic academics has been really challenging ie colors, numbers, shapes, reading, writing, math 

Just getting them to sit down and focus and be compliant is a challenge in itself. 

Then comes the memory issues. The concepts are frequently forgotten and repetition is required. 

However there are some with amazing gifts. One child has an amazing vocabulary due to scripting. 

Another child is amazing at putting things together even though he is nonverbal. 

Another child is great at sewing without a pattern even though she struggles remembering how to do her chores on a daily basis.

 

The main thing is find something they are good at and keep building that up and use it to help gain the skills that are needed. 

 

[Targhee]

For some reason the word intervention makes me shudder because we have had lots of intervention. I see it as using different strategies.

 

Anyways, some really early clues that somethings were not quite right with some of my kids:

 

1)Stopped pointing or never pointed noticed this by age 1.5yrs

2)Stopped waving or never waved by 1.3 yrs

3) Never babbled by 1.5 yrs, mamama, babababa

4) Couldn't stop touching things, constantly having to pull hands back and even then, hands went out to grab, touch again and again etc even in dangerous situations by 1.5yrs

5) wandered away from the family, group like at parks, tries to escape house, walks in the middle of the street, doesn't stop when when you scream stop or call out name 1.5yrs

6) rolled cars back and forth and played with other toys less or just focused on one aspect of the toy 1.4yrs

7) not really talking in full sentences by three, one word or just phrases 3yrs

8) Not looking at what you are pointing at 1yrs old

9) Not showing interest in surround. Just wandering around and can't focus on one thing for more than 3 secs. 1.5 yrs

10)Not talking 2yrs

11) Can speak, but never spoke to anyone outside of the family age 8yrs.

 

This is the time to get hearing tests, vision tests etc and get an assessment through regional center or something place like that.

Be aggressive with early intervention. Better safe than sorry. I have had two kids suffer because I took the wait and see approach and meanwhile they were sinking in deeper and deeper depression. People would get mad and frustrated with them including myself because I did not want a diagnosis and did not take the intervention seriously and as a result they learned that they were bad.

 

With each of these kids, basic academics has been really challenging ie colors, numbers, shapes, reading, writing, math

Just getting them to sit down and focus and be compliant is a challenge in itself.

Then comes the memory issues. The concepts are frequently forgotten and repetition is required.

However there are some with amazing gifts. One child has an amazing vocabulary due to scripting.

Another child is amazing at putting things together even though he is nonverbal.

Another child is great at sewing without a pattern even though she struggles remembering how to do her chores on a daily basis.

 

The main thing is find something they are good at and keep building that up and use it to help gain the skills that are needed.

Wisdom

[MyLittleBears]

I shamefully took the advice of others to "not have him labeled" and "what and see". It is indeed the fact that we finally got a label, combined with the specifics of testing, that I am now able to help my ds. It comes with a kind of freedom rather than boundaries. I know when to ease up on him, when to accommodate, and when its ok to push. Without the label I was always pushing him beyond his capabilities. I am sure he felt helpless and inadequate and he didn't even know why. His "label" has made him a happier kid and given him parents who are better informed and therefore better teachers and advocates.  Labels can be beautiful. 

[Guest Deborah Joyce]

The first point in time which I realized that my son (now 19) was not just "learning differently," but needed intervention in order to cope was when he was in kindergarten. I found out that the teachers were regularly sending my son for time outs - some of them lasting for 45 minutes, because he would not do his printing work properly.

 

The behaviours he showed were: scribbling hard on the workpage with a look of frustration and anger when asked to keep trying. He would sometimes scrunch up and throw his paper and pencil on the floor. 

 

I started homeschooling my son at the end of grade one. I thought that if I taught him at home and used some strategies giving to me by an occupational therapist for his fine motor skills everything would go along smoothly and he would then catch up. His printing improved. YAY!

 

However, new areas of weakness kept popping up that needed to be addressed. I was using the curriculum suggested in your book, "The Well Trained Mind." I was hoping that all my son needed was GOOD curriculum and an understanding teacher (me). 

 

Fast forward a couple of  years when I started to see signs that there was something else going on with my son regarding his ability to learn. He would take a long time to do his work, and I would have to keep telling him to focus, as he would drift off. He would get frustrated if the worksheet I gave him seemed to have too much work on it. He would give up easy and say things like he can't do it. And he would sometimes resort to his old behaviour of scribbling on his worksheet when he was frustrated. Writing was the hardest subject. Coming up with a sentence to write seemed extremely difficult. He just couldn't seem to find the words, both verbally and written work. He needed a LOT of prompts and encouragement. I kept having to go back and repeat lessons already taught because the next level up seemed too hard. He seemed to tire easily and couldn't do half the workload that was suggested in your book, TWTM. 

 

I have tried every writing program out there, and my son is still struggling, but I have not given up. He is progressing, but it's at an extremely slow rate.  

 

Looking back, the clues and behaviors that my son was not just "learning differently", but needed interventions in order to cope were all there - all of which are listed above. There were more more clues, but I would need a much bigger file to hold it all.

 

I wish I had gotten my son assessed earlier - It wasn't until he was 18 that I got him a full psychoeducational assessment. Also, I wish I hadn't pushed my son through the lessons so fast trying to keep up with what I thought other mainstream kids were doing. I only ended up backtracking and starting from scratch in most, if not all areas.  

 

I would suggest that other parents look for signs of their child not being able to keep up, not understanding what is being asked of him/her, having to repeat your instructions over and over again, not being able to focus and/or stay focused for long, and to look at behaviours (ie. like my son displayed by scribbling, pushing, throwing, scrunching work/paper AND feelings of anger and frustration and wanting to give up.).

 

When in doubt, go and get your child assessed. When my son was assessed by an occupational therapist, it helped me to understand that my son had fine motor challenges and the therapist gave me strategies to help him cope and learn to print.  When my son had trouble understanding instructions and trouble with expressive language, I had a speech and language assessment done. These assessments helped me understand not only where his delays were but where his strengths were, and offered me strategies to help him learn. Unfortunately, the cognitive delays took longer for me to see - it wasn't until my son was 17 that I got him a psychoeducational assessment. But now that I know where his weaknesses and strengths are, I understand more and have more strategies to help my son learn better, at a pace that works for him.

 

The good news is that, after 12 years of homeschooling, my son is still learning and progressing academically. He gets tested - academic screening - every year by his Dr. My son is now working at a high school level for all of the main subjects, and soon I will help him prepare to write his GED equivalency. It may have taken us longer to move up through the grades levels, but with lots of patience we are getting there.  :-)

 

Deborah Joyce in Toronto, Canada!

 

 

[pkbab5]

I'd like to share my story about my son.  When he was 12 months old, he was developing normally, and had a few words.  By 18 months old, he had lost his few words and was not talking at all.  Everyone I knew told me that he is a boy, boys talk late, don't worry about it, just wait.  I didn't listen, because I'm not that kind of person.  I had read in a book about autism that most late talkers are fine, but a few need help, and for those few the earlier you get help the better the long term results are for the child.  So the trick is to go ahead and get help the moment you start suspecting something *could* be wrong, and if it turns out nothing is wrong, then great.  But if it turns out something is wrong, then you've helped your child immensely.

 

So, I called the Early Intervention Program myself and had them come evaluate my son.  He did indeed have a speech delay, and I asked for the maximum amount of therapy that they were allowed to give.  I then also hired a private speech therapist on top of Early Intervention.  He had speech therapy 3 times a week, and progressed very slowly, but he did progress.  I did all of the "homework" assigned by the therapists and worked with him a great deal at home.  He was still behind, but he wasn't stuck, he was moving forward.  So I just kept going.

 

When my son was almost 3, one of his therapists noticed him occasionally "pausing" for a second or two, and staring out into the distance.  When he described it to me, I realized, oh yes, he does this all the time, but I never thought anything of it.  It just looked like he was thinking for a second.  On that particular day, the therapist had just come from working with another child who was having seizures, and said my son's pauses were a bit suspicious, and suggested I get my son checked out with a neurologist.  A week later my son had his first EEG where it was confirmed, he had been having very short absence seizures, a few seconds each, every 10 minutes or so, probably since he was 12 months old.  This explained everything.  He started on anti-seizure medication immediately.

 

It took approximately 1 year to get the medication and dosage correct.  When my son was almost 4, he finally had a clean EEG, meaning the medication was working.  During this time, he aged out of Early Intervention, so I hired more private therapists and kept up his therapy: speech, ABA, and a little OT.  As the year progressed and the medication dosage increased, his developmental milestones progressed as well.

 

At 4 years old, he had a full psycho-educational evaluation.  He tested in the normal range almost completely across the board, with only a few small trouble spots remaining, mostly in language comprehension.  The psychologist said that his scores were amazing considering his medical history, and that the therapy (and therapists) basically saved him.  He said my son should be fine in time for Kindergarten, and gave some recommendations including private schooling if possible, and "after-schooling" everyday especially in language arts.

 

I started the "after-schooling" right away, in preschool, with the help of this board, and I'm proud to report that after one month of beginning phonics instruction with me, my son can now read the first few Bob Books.  I am so thankful to Early Intervention and to my son's therapists.  Childhood Absence Epilepsy very rarely gets diagnosed this early, because the seizures start so short that it is almost impossible for a layman to notice them this early.  Most children with absence epilepsy don't get diagnosed until grade school, after the seizures have gotten much worse and last 10-20 seconds each.  So the therapists really did save my son.

 

So now I tell everyone - when in doubt, go ahead an get some intervention, as soon as you can.  It can only help, and in some cases, it can help a great deal.

[ClassicalChristina]

This response is too late for the new book, but thought I would add my story in case it helps someone.

 

My son was a slightly late talker and his speech wasn't entirely clear, but he seemed to be ready for reading and knew his alphabet by 5, so I started with the same things I did with my first son.  By the end of kindergarten, we hadn't really progressed past the letter sounds, so I decided to repeat kindergarten and used a more rigorous curriculum, Memoria Press, which is extremely thorough.  He seemed to do well, though was having a difficult time by the end of the year with the readers.  Within 2 months of 1st grade, (he should have been in 2nd grade, age-wise) I had to ditch the curriculum, because he got to a point where he was completely lost.  I had him tested for vision and hearing, which came back fine.  We started again with more phonics repetition, this time utilizing a Kumon center which requires practicing until the phonics are mastered at 90% accuracy within a set time limit.  He took almost a year to pass letter sounds, blends and diagraphs, but started struggling again and remained at a Kindergarten-1st grade reading level.  I finally decided to have him tested at the end of 3rd grade (like many others, listening to the advice that he might be a late bloomer).   He was diagnosed with an auditory processing disorder and dyslexia.   

[GoVanGogh]

SWB, I wanted to thank you so much for publishing the fourth edition of TWTM.

 

It was interesting and a bit odd to go back today and re-read (posted above) what I wrote 13 months ago and 11 months after getting our son's neuropsych report.

Our DS was born premature after a complicated pregnancy. We had issues from the start - breathing, feeding, speech, etc. DS was screened for cerebral palsy when he was two years old, but we were told he didn't have enough symptoms to warrant further testing. His development has always been scattered - extremely early in some areas (walking at 8 months, adjusted to due date) but very delayed in others. Every year, I would take DS into the pediatrician's office for his well child checkup and push for answers. Every year I was told he was a late bloomer. The local homeschool community was absolutely no help, as so many believe children develop in their own time.

At age 11, we finally got a new OT evaluation, an MRI and - ultimately - a cerebral palsy diagnosis. We were told then it would take a year or more to work our way to the core of his diagnosis and get through the layers of therapy needed. For a full year, it seemed as if we were getting another diagnosis added on weekly, along with more therapy recommendations. Apraxia. Clonus. And on and on.

 

Last summer, at age 13, our DS had a full neuropsych evaluation and the final pieces of the puzzle came together. In August of last year, our son was formally diagnose with right side hemiplegia from a perinatal stroke. Physically, his CP is mild and his movements come across more as quirky. He has severe aphasia, however. All of those years of me asking our pediatrician and fellow homeschool moms - How come he can read on such a high level but barely write his name? How come he can talk all day on Star Wars but barely write a four word sentence? How come he often sounds like he is just parroting back what he hears? That is the aphasia.

 

Homeschooling has been such an incredible blessing for our son. We have been able to let him soar where he can, yet remediate where needed. He has an intense desire to learn and has retained that through these last few years. But we do deeply regret listening to those that said DS was a late bloomer. We lost years of valuable therapy. Some things cannot now be corrected as they are too engrained in DS's movements. Some things will now need remediated through high school and likely into college. Doing therapy with a boy in puberty sucks. LOL I am now in therapy for PTSD, which I have likely needed since DS's birth but his late CP diagnosis was a major blow to me.

 

We have loosely followed TWTM, tweaked for DS's issues, since we started homeschooling. (Ex: I did give up on Latin. But DS is now, at our neurologist's suggestion, learning a modern language and doing well with it. It seems to be forming some neuro connections not made with English.) TWTM has been a wonderful roadmap on this journey.

[PeterPan]

GVG, as a total aside, have you seen the trailers for the new tv (ABC?) series Speechless...  I'm excited about it!

 

[Susan Wise Bauer]

SWB, I wanted to thank you so much for publishing the fourth edition of TWTM.

 

It was interesting and a bit odd to go back today and re-read (posted above) what I wrote 13 months ago and 11 months after getting our son's neuropsych report.

Our DS was born premature after a complicated pregnancy. We had issues from the start - breathing, feeding, speech, etc. DS was screened for cerebral palsy when he was two years old, but we were told he didn't have enough symptoms to warrant further testing. His development has always been scattered - extremely early in some areas (walking at 8 months, adjusted to due date) but very delayed in others. Every year, I would take DS into the pediatrician's office for his well child checkup and push for answers. Every year I was told he was a late bloomer. The local homeschool community was absolutely no help, as so many believe children develop in their own time.

At age 11, we finally got a new OT evaluation, an MRI and - ultimately - a cerebral palsy diagnosis. We were told then it would take a year or more to work our way to the core of his diagnosis and get through the layers of therapy needed. For a full year, it seemed as if we were getting another diagnosis added on weekly, along with more therapy recommendations. Apraxia. Clonus. And on and on.

 

Last summer, at age 13, our DS had a full neuropsych evaluation and the final pieces of the puzzle came together. In August of last year, our son was formally diagnose with right side hemiplegia from a perinatal stroke. Physically, his CP is mild and his movements come across more as quirky. He has severe aphasia, however. All of those years of me asking our pediatrician and fellow homeschool moms - How come he can read on such a high level but barely write his name? How come he can talk all day on Star Wars but barely write a four word sentence? How come he often sounds like he is just parroting back what he hears? That is the aphasia.

 

Homeschooling has been such an incredible blessing for our son. We have been able to let him soar where he can, yet remediate where needed. He has an intense desire to learn and has retained that through these last few years. But we do deeply regret listening to those that said DS was a late bloomer. We lost years of valuable therapy. Some things cannot now be corrected as they are too engrained in DS's movements. Some things will now need remediated through high school and likely into college. Doing therapy with a boy in puberty sucks. LOL I am now in therapy for PTSD, which I have likely needed since DS's birth but his late CP diagnosis was a major blow to me.

 

We have loosely followed TWTM, tweaked for DS's issues, since we started homeschooling. (Ex: I did give up on Latin. But DS is now, at our neurologist's suggestion, learning a modern language and doing well with it. It seems to be forming some neuro connections not made with English.) TWTM has been a wonderful roadmap on this journey.

 

THANK YOU so much for those kind words.

 

I wish I'd been able to give even more guidance for non-neurotypical learners in TWTM, but it's already such a huge book--and this topic could be a whole book in itself. I'm planning on building up the online recommendations over the next year, using feedback from these forums and from parents of kids dealing with these challenges, in hope it will make the tweaking even easier.

 

It sounds as though your tweaking was extremely successful. Congratulations!

 

SWB

[Kat w]

SWB, I wanted to thank you so much for publishing the fourth edition of TWTM.

 

It was interesting and a bit odd to go back today and re-read (posted above) what I wrote 13 months ago and 11 months after getting our son's neuropsych report.

Our DS was born premature after a complicated pregnancy. We had issues from the start - breathing, feeding, speech, etc. DS was screened for cerebral palsy when he was two years old, but we were told he didn't have enough symptoms to warrant further testing. His development has always been scattered - extremely early in some areas (walking at 8 months, adjusted to due date) but very delayed in others. Every year, I would take DS into the pediatrician's office for his well child checkup and push for answers. Every year I was told he was a late bloomer. The local homeschool community was absolutely no help, as so many believe children develop in their own time.

At age 11, we finally got a new OT evaluation, an MRI and - ultimately - a cerebral palsy diagnosis. We were told then it would take a year or more to work our way to the core of his diagnosis and get through the layers of therapy needed. For a full year, it seemed as if we were getting another diagnosis added on weekly, along with more therapy recommendations. Apraxia. Clonus. And on and on.

 

Last summer, at age 13, our DS had a full neuropsych evaluation and the final pieces of the puzzle came together. In August of last year, our son was formally diagnose with right side hemiplegia from a perinatal stroke. Physically, his CP is mild and his movements come across more as quirky. He has severe aphasia, however. All of those years of me asking our pediatrician and fellow homeschool moms - How come he can read on such a high level but barely write his name? How come he can talk all day on Star Wars but barely write a four word sentence? How come he often sounds like he is just parroting back what he hears? That is the aphasia.

 

Homeschooling has been such an incredible blessing for our son. We have been able to let him soar where he can, yet remediate where needed. He has an intense desire to learn and has retained that through these last few years. But we do deeply regret listening to those that said DS was a late bloomer. We lost years of valuable therapy. Some things cannot now be corrected as they are too engrained in DS's movements. Some things will now need remediated through high school and likely into college. Doing therapy with a boy in puberty sucks. LOL I am now in therapy for PTSD, which I have likely needed since DS's birth but his late CP diagnosis was a major blow to me.

 

We have loosely followed TWTM, tweaked for DS's issues, since we started homeschooling. (Ex: I did give up on Latin. But DS is now, at our neurologist's suggestion, learning a modern language and doing well with it. It seems to be forming some neuro connections not made with English.) TWTM has been a wonderful roadmap on this journey.

Big hugs .

 

My oldest has CP. It's a tough journey. It's a hard thing and completely mind boggling (which makes reconciling it in our minds) that they can be so incredibly bright on one hand.

Yet, so many deficits in others.

 

Sounds like you have a very bright kiddo :)

 

We don't have the stroke aspect , but my daughter is now 26, functioning very well, in college and doing great . has a baby, married and lives a completely 'normal' like.

 

We went through years of therapies, series of castings and braces. Speech, ot, PT, and learning to walk again .

 

She says now she is successful because of the CP. It made her an overcomer.

 

Take heart mama, I have 2 autistic guys too. Never underestimate the love , support, and resiliance of these little guys :)

 

You might be surprised at what together you all can accomplish :)

Medical advances progress every month, not year anymore , but month. You never know what methods may come out thst will further your lil guy along.

 

With the love I see you have for dc, you can and will get much accomplished :)

 

More big hugs. :) sometimes , things work out way better than expected