How I teach my non-verbal son

Please notice the title of this post. I know that parents are often looking for “how to teach a non-verbal child” or “how to teach an autistic child with little language,” but I really cannot tell you how to do that. I can tell you what has worked for us with our own child, who does not have reliable verbal responses. Around kindergarten I think most parents of Autistic children start to panic if their Autistic child is not conversing and one of the reasons that they are panicking is that they cannot envision teaching their child history or long division without reliable spoken language. I completely understand that feeling, but I know now, more than ever, that spoken language is not a prerequisite for learning. Moreover, it is a grave injustice to deny a child a chance to learn. Can you imagine how bored you would be if your were “learning” the same things over and over again for years? This is what happens to many of our non-verbal children in school because it is assumed that if a child cannot communicate verbally what they know, they have not learned it and cannot learn it.

I have been teaching P at home for as long as I can remember, even before we officially “homeschooled” and we have recently begun to use Soma RPM (Rapid Prompting Method), and some of these ideas come from RPM, but this is not a “How to do RPM” post. We are just starting the program and although we love it so far, we still have so much to learn. I used these steps before we ever started RPM, but RPM has helped me understand WHY many of these things work and has given us a more solid path toward open ended communication in education.

1. PRESUME COMPETENCE

I believe that my child can learn, and that he can learn on grade level. I believe not only that he will “one day” lead a productive and happy life, but I believe that for this grade, today, right now. Have you heard of the “least dangerous assumption”? Not the theological one – that one has some problems:-) The autism one. What if I assume that P can understand me? How does that change my interaction with him? What if I assume he understands the things I say in front of him, about him? How does that change the way I treat him? What if my assumption is wrong? What if it is right? I assume he is competent and that he understands. Does that mean he is tuned in to everything I say? No, but then again, even typical kids tune mom out sometimes 🙂

2. USE HIS MOST ALERT SENSE

In RPM this is called the “open learning channel.” In P’s case, he is very, very visual, so I try to support just about everything I say with visuals. He is also easily distracted visually, so I have to stimulate the kinesthetic sense by using small movements to help him to keep his focus on the lesson. Even though I try to appeal to the visual sense, it is also important for him to develop his attention to auditory cues and spoken language since that is what most of the world uses to communicate information (not that he cannot understand spoken language, but it is hard for him to maintain focus on it), so I am constantly talking and explaining things to him while I am also presenting the information visually. If you are not sure what your child’s most alert sense is, ask yourself: What do they spend most of their time doing? What are their “stims”? That can help give you a place to start.

3. KEEP HIM TUNED IN

As I mentioned, I use tactile cues and movement to help him focus. It doesn’t have to be big movements. It can be handing him a pencil, asking him to write a key word, tracing a drawing that I am discussing. I also change thing up as much as I can. I change the tone and/or volume of my voice, I change the type of letters that I am writing with, I change my position or his position. In RPM we keep a constant pattern going of giving information and then asking what you just taught, so you may say, “Forests are full of plants.” and then ask, “Did I say that forests are full of plants or cars?” or I may ask “What would I see in a forest? Trees or desks?” The purpose of the questions is not because you don’t think the student understands the initial statement; it is to make sure they are still engaged. I have found that P is perfectly capable of understanding first grade language (he is in first grade), but he may not always be paying attention, so if I expect him to learn, he must be tuned in to the material.

4. ATTEMPT. OBSERVE. ADJUST…. ATTEMPT. OBSERVE. ADJUST…. ATTEMPT. OBSERVE. ADJUST…. ATTEMPT. OBSERVE. ADJUST….

Here is one of the latest examples of how we have adjusted (this one with the help of Erika at ACE Teaching and Consulting):

ATTEMPT: RPM starts out by having the student select between two written answers.

OBSERVE: P has a habit of repeating the last option and after he repeats it, for some reason he wants to choose it. If you take the verbal element out (if he does not repeat) he will choose the correct answer, but the repeating is not something he can just stop doing.

ADJUST: If we just write the two options after the question, he is much more successful. Instead of saying “Tree or Desks,” we say, “this or this” while we write out the options. Voila! He can now show what he learned without being distracted by repeating the last answer.

Truly, the biggest hurdle is presuming competence. Once you believe your child can learn, it is just a matter of figuring out how to do it. If P has not learned something appropriate for his grade, it is only because of my incompetence as a teacher, not his inability to learn. Notice that I did not say “act like any other first grader.” I said “learn.” Pablo is autistic. It is no great tragedy, but it is a great difference and his communication will be different than that of a neurotypical child, but that does not mean that he cannot understand and analyze information and develop higher order thinking skills, just as any other child does. Who knows what that unique brain of his will come up with, if he is given a chance to be educated.

If you are looking for some inspiration or confirmation that your child really can learn, consider these:

Carly was assumed to have a low IQ and thought to not understand the world around her, until she finally found a way to communicate. Now she is a successful college student.

Ido was depressed and angry because he could not show that he knew what he was being “taught” and thought that he would be trapped forever in silence while no one knew.

Emma knew much more than anyone imagined, but could not express it until recently.

There are so many more! These are NOT isolated cases and notice that they did not suddenly start speaking. They learned to communicate in other ways. As one of the main participants in the movie “Wretches and Jabbers” says, (I am paraphrasing) “Communication is a basic human desire, not a special talent.” (Watch that documentary for several more examples of non-speaking communicators.)

If you want to know more about Soma RPM:

HALO (in Texas)

ACE Teaching and Consulting (in Wisconsin)

SomaMukhopadhyay’s books on RPM

Check out this page at Emma’s Hope Book for more Autistics that communicate without relying on spoken language.

And PLEASE, PLEASE, PLEASE (pretty please) read “Ido in Autismland.” It should be required reading for anyone that works with the Autism community or who has any Autistic friends or family members.

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Homeschool Curriculum Review: Math-U-See

I have read many homeschool curriculum reviews and while it is nice to hear that people like or don’t like a certain program, I need to know WHY because my kids are probably different than your kids.  After all, that is one of the reasons most of us homeschool, right?

One of the most debated curriculum choices is Math-U-See.  People either love it or hate it or only love it for certain grades.  The people that don’t love it usually fell that way because they believe that it is not rigorous enough and to be honest, I felt that may be true in the past (although not anymore).

The first thing you must know about Math U See, is that it teaches in a linear way and concepts are taught to mastery.  Many math programs are a mile wide and an inch deep.  In first grade they touch on rote counting, counting objects, more than/less than, place value, adding, subtracting, time, measurement, fractions, skip counting, writing numbers, shapes, 2D and 3D, and other concepts.  Because there is so much ground to cover, the curriculum skips around a lot.  Two weeks on one subject and then two weeks on something unrelated, which really does not help the student retain the information.

Math U See’s Alpha book (usually done in first grade) focuses on single digit addition and subtraction.  Period.  Now, in truth, it does teach many of the subjects mentioned above, but it is all within the context of single digit addition and subtraction.  So, skip counting is covered, but might be approached as 5+5+5 when first introduced.  The concepts build on one another and follow a logical order.  When D was younger, I worried about this because I thought that he may have difficulty if he returned to public school because Math U See may not cover some of those things until later (when they fall logically).  However, I came to realize that because math curriculum in schools tended to skip around so much, most of the information had to be covered again the next year and maybe a third year after that before the students actually mastered it!  If he had to take a standardized test, he would have probably missed a few, but who cares?  I have no absolutely desire to teach to a test.  By the time he takes the SAT or ACT, it will be covered!

 Here are the “primary” levels available:
Primer – This is an optional kindergarten level math.  It is the least “linear” of all the levels and introduces a variety of subjects.  This is the only level where you are “allowed” to move on even if your student does not totally “get” the concept.
Alpha – Single-digit addition and subtraction
Beta – Multi-digit addition and subtraction
Gamma – Single and multiple digit multiplication
Delta – Single and multiple digit division
Epsilon – Fractions
Zeta – Decimals
These are considered “secondary math”:
Pre-Algebra
Algebra 1
Geometry
Algebra 2
Pre-Calculus
Calculus

There is also a consumer math class called “Stewardship.”

If you are wondering where they introduce time or square roots or some other subject, you can take a look at the scope and sequence at the mathusee.com site.  It is all in there, but it is taught where it should be taught logically, not just to check a box for some state standards checklist.  For example, D is finishing up Epsilon right now.  The area of a circle is taught with Pi as 22/7 because Epsilon is all about fractions.  They also teach prime numbers here because you need to find factors for fractions.

How it works:

Each lesson (30 lessons per book) has a DVD of Steve Demme (creator of MUS) teaching the lesson.  He is teaching kids, so they have some of the same (right and wrong) responses that your kids may have.  He explains the concept and shows it visually with the blocks and usually gives several examples.  The parent should watch the DVD lesson and LATER either watch it with their child, so that they can do the block activities along with them and check for comprehension or the parent can just teach it to the student.  To be honest, I just let D watch it now that he is older and then I watch it over his shoulder so that I can help him.  For P, I watch but don’t show him the video.  I teach it to him all myself.

Some good things:

  • Concepts are taught in logical order.  Retention is better because lesson build on one anther
  • It is multi-sensory.  It is especially visual, which works really well for my boys and for many kids on the spectrum (and others who are not).
  • You know what to expect.  Each lesson has six pages and a test.  The first three are “Lesson Practice,” which focus on the concept just taught.  The last three are “Systematic Review,” which starts with problems from the current lesson and then gives many review problems.  Because you know what is coming, you can tailor it to your student.  If D gets every problem correct on page one, he can skip one of the lesson review pages.  If he gets 100% correct on the first Systematic Review page, he can skip to the test.  This keeps you from wasting time.
  •  Steve Demme is a very good teacher!  I actually like math, but I am not very good at teaching it.  Usually it just kind of makes sense to me, so it can be hard for me to explain it.  Even though I do enjoy math, I have understood it better after watching the videos.  (Isn’t that true for most homeschool subjects though?)
  •  The program is thorough.  In the beginning I had my doubts, but I have now heard from many, many parents that used MUS all the way through Calculus that did very well (often better than their peers) when they got to the college level.
  •  It seems easy!  I think  this is one of the reasons that some people doubt that it is rigorous enough.  Concepts are added slowly, one at a time, so that it seems very easy.  Many of us think, “I don’t remember math being this simple!”
  •  There are many used copies for sale (especially of the DVDs, Teacher’s Manuals and the Test Booklets).  There are the Spiral Bound versions, the 2004 versions, the 2009 versions and the new 2012 versions.  However, they all work together!  The old DVD with the new workbook is fine.  They don’t change the lessons.  This has been great because I usually buy everything used easily except the student workbook, which I buy almost always have to buy new (comes with the test booklet).

Some possible drawbacks:

  • It CAN be hard to switch to MUS if you have already done a few years in another curriculum.
    One reason for that is that MUS expects you to MASTER the skill taught that year.  After Gamma, the student should be able to do, for example, 8,758 x 6,241.  Some curriculums may not go that far.  They may teach only to the hundreds or thousands times tens.  MUS advises you to go back and fill in the gaps because math should be sequential and you should not move on until one skill is mastered.  I started doing the Beta book with D in second grade.  By the end of October I decided that homeschooling was not a good idea for that year and ended up sending him to public school.  At the end of the year, I decided to homeschool again, so I thought we would do a quick review of Beta over the summer.  Well, it turned out that although he did well in school, he did not know everything in the Beta book, so we just started where we left off and ended up finishing Beta about half way through third grade.  Then we moved on to Gamma.  I hated the idea of being “behind,” but I knew that it was better for him to really know the material.  Now we are ahead because working through the summer worked so well, that we have kept it up every year.  We move less quickly in the summer – usually just one page a day, one unit every two weeks, but we never totally stop. 
  •  It can be expensive.  Once you get the Teacher’s Pack (Teacher’s Manual and DVD) and the Student Pack (Workbook and Test Booklet), if you buy it new every year it is expensive.  You also have to buy the blocks, but that is pretty much it for the manipulative until you reach Gamma, so they will last you several years.
  •  Some things are not done the way you remember them (the way we used to do them in school), so you do need to watch the videos, even if you are good at math.
  •  Some people find it the predictability monotonous.

Personally, I HIGHLY recommend MUS, especially for learners that are not primarily auditory learners.  After using Alpha, Beta, Gamma, Delta and Epsilon, I think I have a pretty good picture of the program.  It is worth the money for us (even on our limited budget) and I can’t imagine ever switching to another curriculum for math.

Here are some MUS-related links to help you make your decision:
www.Mathusee.com (official website)
Math U See’s YouTube channel (a great resource for FAQ and demos!)
Math U See’s Facebook page https://facebook.com/mathusee
Math U See related yahoo groups (not officially sponsored by MUS):
http://groups.yahoo.com/neo/groups/MUSSwap/info (for people wanting to buy or sell used MUS materials)

Seven Senses on a Diet

If you have a child with Autism, you have probably heard of “sensory issues.”  Simply put, a person with sensory “issues” is usually:

  • hypo-reactive (under-reacts) to sensory input (things they see, hear, feel, etc.) and may crave certain types of input or
  • hyper-reactive (over-reacts) to sensory input or
  • has difficulty with integration of the senses – they may have problems processing more than one type of sensory input at a time (for example, they can’t process what they hear when there is too much going on visually)

A related issue is praxis, in which a child may have motor planning challenges (making a plan of what to do and executing that plan), but that deserves its own post.

It is estimated that about 90% (or some say all) people with Autism have sensory “issues.”  However, if a child (or adult) does have sensory problems, that does not mean that they are Autistic.  Sensory processing problems are the main reason for the “stimming” often seen in Autistics.  Stimming, or self-stimulating behavior, is usually done to bring the person to a more ”regulated,” calm and alert state.

As children, we are taught that we have five senses: sight, hearing, taste, touch and smell.  Well, there are actually at least two more: our proprioceptive and vestibular senses.  The vestibular sense refers to your sense of balance.  Our proprioceptive sense is being able to feel where your body is.  It can be thought of as body awareness and it is easy to see that a person with little grasp on just where there body is in space would have multiple challenges, especially with movement.  For most people, their bodies receive information from their joints and muscles to let their brain know just where their body is.  For some people, that information is not received clearly by their brain.  How could one possibly perform complex motor patterns if they have to constantly check where their own body parts are?  How could you feel calm and grounded?  These people often prefer a strong touch or deep pressure because it improves their awareness of their body.

Here are some signs that a person may be having difficulty processing these senses:
(note that there and an infinite number of other symptoms, but I am hoping to give the reader a representative picture for each)

sight

  • Purposely looking at things from different distances or from a different angle (when not related to poor eyesight)
  • Closing eyes in visually over-stimulating environments (maybe stores that have things constantly in view with little empty space)

hearing

  • constantly changing the volume on videos, radio, etc.
  • covering (or constantly covering and uncovering) ears
  • making noises to drown out other noises

taste

  • refusing to eat certain foods with strong tastes (although this may be a touch/texture issue)
  • a need to taste things, even when they are not food (not just mouthing, actually tasting)

touch

  • a constant need to explore things by touching them
  • becoming upset when having to touch certain textures

smell

  • bringing things constantly to the nose to smell
  • inability to concentrate when in the presence of strong perfume

proprioception

  • clumsiness, running into things
  • unable to copy certain movements

vestibular

  • gravitational insecurity, unsure in movement
  • constant spinning, excess movement

So what do you do if your child (or you) have problems with any of these?  Most occupational therapists (OTs) would develop a “sensory diet.”  Don’t think of it in the sense of a restrictive diet (I won’t eat carbs).  Instead, think of it as what you feed yourself.  If you are on a high protein diet, you will feed yourself a steady stream of protein.  If you have a sensory diet for your child, it will provide your child with the appropriate amount of sensory stimulating or calming activities to bring your child back to an alert, calm state.  For example, a child who is over-reactive to smell, should avoid strong smells, but you would want to slowly introduce them to desensitize the child to it, so that they can eventually still function when the school cafeteria is making broccoli.  A person whose vestibular sense is constantly needing input should have scheduled times during the day when they can spin or engage in activities that will satisfy that need.

Add to all of this that sensory systems change over time.  A person who once struggled with one sense may later struggle with another.  Sometimes people even go to extremes back and forth between craving and avoiding input in the same day.  That is why consulting an occupational therapist is so helpful.  We all do things to stimulate or calm our nervous system.  Some people clench their teeth.  Others doodle or tap a pencil.  We have just found “socially appropriate” ways to do this.

It should also be said that for many people, especially those on the spectrum, these issues will probably never completely disappear.  Some people find “stimming” by autistics or others uncomfortable to watch, but once you know the reason behind it (or even if you don’t quite get it), hopefully you can understand and allow them to be themselves.  It takes a great deal of effort for some people to not do these things that are calming to them, whether it be flapping their arms or jumping or some other movement.  Why not allow them to concentrate on living their own lives successfully rather than trying to appear “normal” (whatever that is)?

If you have an autistic  child or has a diagnosis or Sensory Integration Disorder, Sensory Integration Dysfunction of if you have been told that your child has sensory “issues,” you will save yourself a lot of frustration by trying to understand in depth what this is and understanding more about your child’s own sensory system.  Make sure to speak to the occupational therapist at school or in early intervention and get recommendations for sensory diet activities at home.  It is effective and worth your time and effort.

A few additional resources

HIGHLY RECOMMENDED VIDEO (60 minutes): http://www.youtube.com/watch?v=v7UIFMpoabA
(I am not a big fan of the organization that sponsored this lecture, but the information here from Lindsey Biel is the best I have seen in one presentation)

Books:

Lindsey Biel, who presented above, co-wrote this excellent book: “Raising a Sensory Smart Child” http://www.amazon.com/Raising-Sensory-Smart-Child-ebook/dp/B004IE9QM2/ref=sr_1_1?s=books&ie=UTF8&qid=1380939083&sr=1-1&keywords=l.+biel+sensory

“Out of Sync Child” by Carol Kranowitz (not my favorite, but a good starter book for people not familiar with the subject) http://www.amazon.com/Out-Sync-Child-Carol-Kranowitz/dp/0399531653

“The Out of Sync Child Has Fun” also by Carol Kranowitz http://www.amazon.com/Out-Sync-Child-Revised-Edition/dp/0399532714/ref=pd_sim_b_1

“Building Bridges Through Sensory Integration: Therapy for Children with Autism and Other Pervasive Developmental Disorders” by Paula Aquilla, Shirley Sutton, Ellen Yack  (This book is really not just for Autism.  It’s all about sensory issues.)

Disclaimer: I am not an occupational therapist.  This information is based on my own experiences and research.

Applying for Social Security Disability Benefits for Children

I was so saddened earlier this year to hear an NPR story on the rise in Disability benefits for children.  I won’t go into the details, but, among other things, it claimed that parents of children receiving Disability benefits do not help their children progress because they want to continue to receive SSI benefits for their children as a child with a disability.

How could you do this to me, NPR, when I love you so?

In NPR’s defense, it was an opinion piece, but it was just so misleading!  See here for a thoughtful response to all of the errors in the piece.

After much persistence, we are currently receiving SSI benefits for P.  Some months we do not qualify because we go over the income limit (and it is not much), but when we do qualify we will receive a small deposit to help offset some of the huge expenses we have as a result of having a child with a disability.

The SSI Disability is a program that provides financial help for low income families that have children with a disability resulting in severe limitations in daily functioning.  If you know anyone that has a disabled child, you know that the expenses facing families dealing with a disability are mind-boggling.  In our case, we have had to purchase separate insurance for P, which cost us several thousand dollars in a period of less than a year.  We have bought him his own iPad and a special communication app (about $700) because he absolutely needed it, we have bought educational products that work for him, things to address major sensory issues and many other things that P needs, just to give him a chance to succeed.  There are many other things that he needs right now, like intensive speech therapy, that we just cannot afford to give him, no matter how frugal we are.  While other families are deciding whether to pay for baseball teams or piano lessons, our children have to forgo all of that so that we can give P half a chance to learn to speak.  To be clear, this is not a complaint. I am harbor no bitterness toward others who can give their child piano lessons because we cannot do those things; I just want to let anyone who thinks we and other families dealing with disability are living comfortably off the government know that they are mistaken.

SSI is a program that helps low-income families to pay for some of the things that their child needs.  If there has been a rise in people participating in the program it is because many people are currently in need.  Unemployment is high, wages are low, and many earn much less than they used to earn. I am sure that there are abusers of the program as there are for EVERY public or private assistance program, but I can assure you that it is not easy to qualify.  There is no evidence of widespread abuse.  Even a serious diagnosis, such as Autism, will not get you approved.  The child must have severe limitations to qualify and the parents must be low income.

After our nightmare with applying for SSI, I promised myself that I would do a blog post in hopes that it might help another family.  For a long time I did not even apply because I had a hard time figuring out if we were eligible.  Information about SSI for children can be complicated and it most of what you find on the internet is for adults that are disabled (SSDI), which is not the same.  I hope to answer some questions that others may have below.

Q: Do we qualify for SSI?

– To receive SSI for your child, your child must have a severe disability that will last for at least 12 months.

– You must have limited resources.  All of your assets cannot be over $3,000 for the parents and $1,500 for the child.  There are certain things that qualify as assets and will be counted, and others that are “exempt” and are not counted.  For example, the family can have one car that does not count towards your assets, but if you have another car, they will look up the value (usually lower than actual value) and tell you that it counts as $___ towards your assets.  Your house is usually exempt and a tax refund is also not counted in your assets, for a certain period of months, so if you got a big refund and have not spent it all, make sure to bring evidence of that and point it out at the interview.  If you cross the limit, between money in the bank and other assets, you are disqualified.

– Your income must be less than then a certain amount monthly.  Assuming the child does not yet work and does not receive child support, the amount is determined by several factors:

– How much of your income is earned (from a job) and how much (if any) is unearned (given to you by someone else, like a government agency)?
– How many parents in the home (one or two)?
– How many of your children are disabled?

For example, in 2013, if you have two parents in the home, only one child is disabled, and the only money you receive is from your employer(s), these are the maximum amounts you could make per month and still be eligible for something from SSI:

One child (disabled)    $3,677
Two children (one disabled)    $4,033
Three children (one disabled)    $4,389
Four children (one disabled)    $4,745
Five children (one disabled)    $5,101
To see the limits for other family situations click here.

Q: What are the steps to apply for SSI?

1.  Call the national 800 number.  Tell them that you want to apply for SSI for your disabled child and they will set up an appointment in person or over the phone with your local office.  Their number is 1-800-772-1213 (TTY 1-800-325-0778) and they are available between 7 a.m. to 7 p.m., Monday through Friday.  Expect a long wait.  You can apply for benefits for adults online, but that is not yet available for children.  Our office was about an hour away, so “local” may not be all that local.  When I called the operator told me that we did not qualify, but that I could apply anyway if I wanted to.  I had done quite a bit of research and I thought she was mistaken, so I just said, “Yes, I do want to apply anyway.”  As it turned out, she was incorrect.  She was thinking of income limits for adults, not children.

2.  At the initial appointment, bring:

Documentation of your child’s disability**:

-The Child Disability Report filled out (https://secure.ssa.gov/apps6z/i3820/main.html)

-All the most recent (preferably within 12 months) reports from doctors, therapist, specialists, etc. that demonstrate your child’s disability.  If you haven’t had a recent visit, it would be helpful to visit the specialist that addresses you child’s disability.  In the case of Autism, a developmental pediatrician, neuropsychologist, etc.

-Your child’s IEP if they are in school, IFSP if they are in Early Intervention.

(They will tell you that you don’t have to bring the reports, but it will help you because once the case reaches the person that is looking at the medical aspect, they want they information immediately or they will close your case, so if they already have it, you do  not have to worry about the doctors/therapists/teachers not sending in reports.  It is already in their hands.)

Documentation of your assets:

Car title, Bank account statements, life insurance, etc.

Documentation of your income:

All checks received for the last 30-60 days.  Income and expenses if you are self-employed.
Lease or mortgage statement (because if you do not pay rent or mortgage, they will count that as income because someone is paying it for you).

Documentation of any other assistance received by anyone in the household:

Food Stamps, anyone else on SSI or SSDI, pension, etc.
At your appointment, you should receive a confirmation number to check on the status of your case.  A “normal” wait time is three to six months.  For us, it took a little over two months for them to even start looking into whether he was disabled or not medically.  The examiner called me to clarify some things on the report and I was able to fax her the additional information she needed.  I would call to check on your case after six to eight weeks if you have not heard anything yet.**

3.  An examiner will determine if your child is disabled.

Just because your child has a diagnosis of autism or some other serious disorder does not mean that you will be approved.  The question is how much it affects his/her daily functioning.  Accommodations in your child’s IEP can show this.  Level of functioning documented by your child’s doctor or therapists are also helpful.***   See http://www.ssa.gov/disability/professionals/bluebook/112.00-MentalDisorders-Childhood.htm#112_10 for details on who qualifies under Autism/PDD.  There are other rules for other categories.  Be realistic about your child’s challenges.  We all believe in our children and see all of their wonderful positive qualities, but this is the time to emphasize the negative :-).  What are the challenges that your child faces in daily life?

4.  The case is sent back to the local office for them to determine whether your income and assets are still low enough to qualify.

This is where our case went wrong.  For some reason, they counted one of our bank accounts twice.  Also, we received a tax refund that they counted, but should have been exempt.

5.  You will receive a letter (and a deposit if you are approved) that will tell you how much you will receive.  If your income varies at all, you must report it monthly.

Q: Should I hire a lawyer?

Maybe.  There are some attorneys that don’t take your case until you have applied and been denied.  They will help you with the appeal.  Usually, you will not pay anything up front for an attorney to represent you.  If they think you can win, they will take your case and then they will later receive a percentage of the back pay.  I, personally, did not feel that an attorney was necessary for our initial application, but thought that I would use one if we needed to appeal.  Later, when they made an error in calculating our assets and send us a denial, I wished I had an attorney because it took another four months to get it straightened out.  An attorney can also help point out things that may be exempt in counting your assets.

Q: Should I call to check on my case?

Yes!  After months had passed I checked on my case and found that they “thought” they sent me a letter that they never did send me, telling me to bring in my financial statements again after being approved (see step four above).  Every step has deadlines. (There are deadlines for you; they have no deadlines at all).  Things have to be completed (by the applicant) within a certain number of days or you will end up being denied.  There is no harm in checking on your case and you will probably have to be persistent.

Q: What is back-pay?

The day that you apply is when the benefits start, but while it is going through the approval process you have to wait for the check(s).  If you are eventually approved, they will pay you starting from the date that you applied, assuming your were eligible all those months.  If you were eligible (based on the financial records you bring) for a partial payment, they will pay you a partial payment for that month.  It is very important to keep all of you financial records, every paycheck, etc. since the day that you apply (and they will ask you for a month or two before that at the initial interview).  You may get back pay in one payment if it does not surpass a certain amount, or you may get it in several payments that have certain limitations on how you can spend them.

Q: Are the people at SSI evil?

It depends when you ask me this!  Just kidding.  I suppose that they are not evil and are not trying to make your life miserable, but they are really overwhelmed with cases.  If you don’t call them, you may never get an answer.  I had to call at least ten times and leave messages for the person assigned to my case to just get a call back.  Sometimes not even that worked.  That was when I wished I had an attorney.

I am not an attorney nor am I any kind of expert in applying for SSI, but if you are considering applying or are in the process and you have a question, I would be happy to try to help based on my own experiences and research.  You can send me a message under the “About Me” tab at the top of this page.

 

** Make a copy of everything you give them because things get lost!  I asked doctors and therapists to send them to me, so that I had a copy and then I send them to SS.

***SS will expect you to get everything they ask of you immediately, but they are in no hurry to get back to you.

Workbox Wonders!

Now that the school year is in full swing we are busy, very, very busy.  R is in preschool for a couple of hours a day and having a blast.  P (1st grade) is going to school for language/literacy work for a short time in the morning and then for PE for 25 minutes in the afternoon and D (5th grade) is taking PE, Music and Art in our local public school.  Apart from that we doing all the academic subjects for P and D at home, so we have a really crazy schedule this year (even crazier than I anticipated because D’s 5th grade “specials” schedule was changed).  I have to print out our schedule daily to see who has to be where and at what time.  It all seems to be working out, but since we have so much going on, I have to be extra organized with the homeschool subjects.photo 4

(Cue the music….) Workboxes to the rescue!  The “Workbox System” is a homeschool organization system that was invented by Sue Patrick for teaching her autistic son.  Since then, many, many homeschoolers have used it (special needs or completely typical kids) and there are a million variations on it.  Google “Homeschool Workboxes” and you can see thousand of ideas to inspire you (if not more).

I “tried” workboxes for a while last year, but I used a hanging file system and it really did not help that much since space was very limited for each subject.  This year, we actually bought two shelving units from IKEA (Trofast) and put an old closet door between them as a desk.  What a difference!  The biggest advantages are:

1. For D, he can be more independent.  He has a list with a number by each subject and he can go to the corresponding drawer to find everything he needs.  Subjects that he needs me for are marked “with mom.”

2.  I don’t lose P’s attention while I am gathering the materials for our next assignment.  Last year, by the time I found the iPad, the crayons or whatever I needed, he was gone doing something else and wanting to go back to that for the next ten minutes.  Now it is so fast that we just move to the next thing without losing attention.

I was afraid that I would have to spend hours preparing the workboxes the night before, but honestly it only takes ten minutes or less.  Plus, all completed work gets put in the “All Done” bin and we are not searching around the house for D’s math test, or essay that has disappeared.  Raquel even has her own bin for when she wants to do “homework.”  I do not know why we did not do this sooner!

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Should I pursue Early Intervention for my child?

P at EI ageEXPECTATIONS

When D was one year old and not speaking, I called Early Intervention myself.  My only concern was his (lack of) speech and I just wanted someone to evaluate him and tell me that he was fine (which he was – a perfectly fine autistic child).  His regular pediatrician thought that he was “fine,” but speaking late because of his exposure to two languages.  Part of me wanted to leave it at that, but there was this nagging part of me that was still worried and needed more confirmation, so I made the call and our lives were never the same.

In general, when children are small, mothers worry.  They worry when they are older too, but there is something particularly worrisome about the development of a young child because they have so many milestones to reach still and often do not communicate well with us yet, and we want to believe that everything will be perfect.  We may not say the word, “perfect,” but we have our dreams and expectations and we would feel some disappointment if we knew that our child would not achieve them.  (Not only children with developmental delays, but “normal” children that choose things that we do not consider good for them.)  This is especially true for our first child.  We know that they will have bumps in the road, but we cannot imagine where those bumps will be, so we do not envision them for our child and they take us by surprise when they come and can even be painful.

In time we realize that our child is their own person.  The sports fanatic dad accepts that their child does not enjoy sports.  The bookworm realizes that little Johnny doesn’t like to read.  These things are part of life and growth and happen to all parents at some time.  Even if you are a person that enjoys diversity and just wants to support your children in their own dreams, we all have expectations without even realizing that they were there.

If your son doesn’t like baseball or your daughter won’t wear a dress, you will probably, at some point, realize that those things are trivial and embrace your child’s own interests.  If they cannot speak, you will have to confront a whole new set of fears and unknown possibilities.  It is that fear that keeps us from making that call, keeps us from scheduling evaluations, keeps us from hearing others’ concerns about our child.  Working in Early Intervention, I see a lot of concerned mommies, especially when they first begin therapy.  Last week they had a “normal” child that had a happy, carefree childhood and a bright future.  Now, they have a problem to fix.  They may feel that their child is suddenly “broken” and facing an unknown future.  Will they ever speak?  Will they have to attend Special Education?  Will they able to go to college?  Get married?  Be happy?  Fulfilled?

What I would like to tell these worried mommies, is that their child is not suddenly “broken.”  The only children in the world are imperfect ones and if your child’s struggles can be addressed in a way they will enjoy, then they are very fortunate!  The vast majority of kids in Early Intervention will actually be very successful academically because the fact that they are in E.I. is proof that  they have a parent or caregiver who cares, wants to help them succeed and will seek help, in spite of their fears. **

Here are some other common questions I have received:

I think he/she will outgrow these delays.  Shouldn’t I wait?

Why wait?  You have nothing to lose and everything to gain. If you wait, the delays may get worse.

Will participation in Early Intervention services go on my child’s “permanent record” or put them automatically in Special Education?

There really is no “permanent record,” and if there were, participation in E.I. would just mean “concerned and involved parent,” not that there is something “wrong” with this child.  There are MANY laws to protect your child’s privacy.  Most parents do tell their child’s school about services received in E.I., but that is up to you and school placement is based on your child’s ability at the time.  Most kids in E.I. will not go through school in Special Education.  They may be eligible for an Early Childhood (preschool) program to supports development, but the majority will be doing great in regular classrooms in elementary school.

I don’t want to turn my child into a “patient” with therapies, when he seems to be “fine.”

Most Early Intervention providers are very good and treating the child as an individual.  The therapies are play-based and the child usually has a great time!  You are getting someone to come and play with your child in a way that will encourage their development.  You get a private “teacher” for your child who comes to you!

I don’t want that many people in my house on a regular basis.

First of all, if you are worried about a messy house or out of control siblings, most likely the therapist has seen much, much worse.  Having the therapy at home is ideal because the therapist sees the child in his/her natural environment.  They are teaching your child, but most importantly they are teaching the parent, which brings me to…

I don’t want a stranger coming in telling me how to raise my child.

They really do not expect you to follow every suggestion, but they will try to give you ideas that you can incorporate into your daily life.  They may tell you to encourage your child to make the sign “more” at meal time when they want more food.  They may show you positions that your child can use to sit that will strengthen their muscles.  Most of the ideas are simple, but a person who is not a therapist may not think of them.

What if I don’t like the therapist?

You can request a new therapist at any time!  Maybe you just don’t like their treatment style or maybe they cancel too often, you can request a different therapist through E.I.

What if I don’t agree with their recommendations for amount/type of therapies?

You are still the parent and you make the decisions about your child.  After the evaluation(s), you will discuss the results with the team and recommendations will be made, but if you feel that any or all therapies are not appropriate, you can decline them (and no, they will not think you are a bad parent!).  You can also decline a service and change your mind later.  You are in no way handing control of your child over to someone else.  You are getting a expert helpers that have a great deal to offer.

**Please note that I am not an official representative for Early Intervention and I do not speak for them.  I am a mom that has had children in Early Intervention and I have worked as an independent contractor for Early Intervention and I speak only about what I have seen and experienced myself.

Constipation Transformation

First, I have to apologize to all of you who are wondering why in the world I would write about such an unpleasant subject.  If you are wondering this, you probably don’t have a child on the spectrum.  The statistics vary, but the lower end of the statistics tell us that 70-80 percent of autistics also have digestive issues.  Of the digestive issues, constipation is the most common.  Because of this, I suppose I should not be surprised that both of my boys have had issues with constipation.  Fortunately, this is one area where I feel like we have won the battle!  P’s issues were so bad that we ended up in the ER more than once, but now we have pretty much no issues with him and we never have to give him laxatives or drugs.

These have been our primary strategies (not only for kids on the spectrum):

1.  Squatting on the toilet.
It is just easier for your body to go in this position.  People squatted for centuries until the invention of the toilet.  If your child will not squat, at least try a stool or something that will elevate his/her feet.

2.  Enzymes.
If you child is verbal and can assess how they feel, or if you feel that they have not gone in a while and maybe they are eating foods that have been constipating in the past, have them take a chewable enzyme with their meal.

3.  Increase fiber and magnesium.
There are many foods that can help you with this, but our standard is Salba Chia Seeds.  They have changed P’s life completely and we notice a difference when we don’t give them to him.  There are lots of ideas on their website, but we put two tablespoons them in the pancake batter every day.  Since he eats about half (the other half is for R), he must be eating about a tablespoon per day.  We skip the syrup and top them with a thin layer of homemade Nutella-type spread or Choco Dream (like Nutella, but better).  (Note: Salba has lots of other benefits too – see here, but they are expensive.)

4. Avoid foods artificially enriched in iron.
This is one is almost never on the list of things to do for child constipation, but it has been very important for us.  I am not saying avoid iron all together and let the child become anemic, but there are many, many foods that are artificially enriched in iron.  This includes many flours, breads, cereals, snacks and many other things.  Look at the label and see how high the iron content is.  Look at the ingredients.  Many foods will say ” [x ingredient] enriched in iron [and other minerals].”  Avoid these.  If you don’t believe me, look up the side effects of iron in vitamins.  If you have ever had to take an iron supplement (maybe during pregnancy, for example), chances are good that it caused some constipation.  Foods that are naturally high in iron have not been a problem for us, but those enriched in iron have been very problematic.

We struggled with constipation for years and now that we have found some things that actually work, I hope others can benefit from what we have learned.  Obviously, I am not a doctor and can not give medical advice,  I am just a mom that has found some solutions for us.