Tragedies and Blessings

Something happened several times last year and now again this year that hit me so hard that I almost didn’t have words to express my grief.  Not one, but several Autistic children and young adults were killed, not by a crazed stranger, but by  their own parent.  One of them was not too far from us in another suburb of Chicago.  Others were in various places around the country, but each one of them had their life taken by the one person who should have protected them.  Reactions were strong on both sides.  Some people saw the parent as a victim; others viewed them as a monster.  I guess victims sometimes become monsters.

Certainly the government and society as a whole may have failed both parents and children.  The government has failed my own child when it blocks access to needed therapies.  Society fails him when they fail to believe in his capabilities or he is excluded from certain activities.  Government fails him when they fail to provide a free and appropriate public education or refuse to help keep him safe.  Society fails him when they don’t care.  Both society and government have failed parents as well.  Respite care and mental health services are often not available to parents when they need them.  Parents feel like they are fighting an uphill battle every day and become weary.

Sadly, some organizations have painted Autistic children (and adults) as a burden in their efforts to raise funds – a burden on their parents and a burden on society.  That view has been adopted by the people that look at us with pity and say that they could “never handle” having an Autistic child.  Yes, yes, I know that they are trying to be sympathetic to what they see as a difficult situation.  Their intentions are good and for that reason I truly do not judge them, but it makes me sad that they cannot understand the tremendous blessings that come with having P as my son.  At one time I would have said that I love P, but don’t love Autism because it makes his life hard, but I have come to realize that am just not sure who he would be without Autism.  Being Autistic is part of his identity and although I will help him to achieve his goals and have as many options as possible, he is not, we are not, victims of Autism.

In certain situations it is not an advantage, for example, that my husband was not born and raised in this country.  People can make unfair judgments based on his accent or based on the fact that he looks differently than they do.  Likewise, when I was overseas it was sometimes not an advantage to be from the USA because of some people’s thoughts about what “Americans” were like.  Still, it is not a tragedy that I am from this country.  It can make things hard in some situations, but it would be wrong for me to be ashamed of my country or for another to be ashamed of their own ethnic background.  In the same way, Autism should not be heartbreaking.

What is heartbreaking is the refusal of many to allow Autistics to communicate in their own way or to calm their anxiety in ways that seem “inappropriate,” like flapping arms or spinning or whatever is helpful to that individual.  What is tragic is when schools do not seek out new methods of teaching when the old ones are not appropriate for the learner.  What is sad is when people assume that not being able to communicate verbally equals no intelligent thought.  What is truly devastating is when a parent feels that their child’s life is so worthless that they would be better off dead.  The thought of it brings up the familiar sadness that I feel when I hear that it was probably a “good thing” that so-and-so had a miscarriage because the child would have most likely been disabled.  Again, I have no judgment here, truly, because I know the intent is to see the “positive” in a very difficult situation, but in my heart it hurts because it says that this person believes that the life of a disabled person is worth less than a person who is not disabled and I know that they just don’t know the truth – that the joy of loving a child with a disability is the same joy that every parent feels.  It is not, in any way, diminished by a diagnosis or atypical behaviors.

So then, why would a parent kill their own child?  Maybe it was frustration and exhaustion because they couldn’t make their child “normal”?  Why was that even the goal?  I really can’t understand it and it can never be excused or justified.  I know, I really do know, the frustrations of raising a child that is greatly affected by Autism.  My son is basically non-verbal.  He has never once answered back to a, “How are you?”.  He has gotten out of the house and just keeping him safe is a constant challenge.  We have been through periods of potty training issues and feces smearing and all of the challenges that go with Autism, but I can say with 100% sincerity that he is a joy.  His life is a blessing beyond what I could ever measure and I love seeing his beautiful face every single day.  His life is just as valuable as yours or mine.

Pablo on my lap at PC

P

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.

Hyperlexia

Just before my oldest, D, was three, and still did not talk, he was already reading. Much before that, before a year old, he showed a fascination with letters and books. I loved reading growing up, so I was thrilled to have a son that would also enjoy getting lost in a good book.

What I didn’t know, was that D couldn’t have cared less about the story. He just liked the letters. He quickly learned the alphabet and easily identified all the upper and lower case letters. Soon after that he learned their sounds, which brought him a whole new level of giddiness. When he started putting those sounds together to make words, his joy was complete and that was what he did constantly.

We had some therapists that wanted us to take away the letters, and for a while I tried to comply, but letters are everywhere! Even if we took away his plastic letters, there were books and signs and toys with letters everywhere. In the end, we just decided to try to use reading and words purposefully. He was already reading, so why not use that skill to teach him the other skills he was lacking? This worked for us and by the time he was talking well, the reading (decoding) obsession faded. What remained was a tendency to read without comprehending what he was reading and that has taken years to address.

Hyperlexia is not defined in the DSM, so its definition is actually a bit fuzzy. There is a common theory that there are three types of hyperlexia:

Type I: A “normal” (known as neurotypical or “NT”) child that just reads very early. Development does not lack in any particular area.
Type II: A child on the Autistic Spectrum that reads well beyond language that they seem to have (receptive or expressive) otherwise. Many would call this a “splinter skill.”
Type III: A child that has some autistic traits, and seems to read beyond their language abilities, but the autistic traits fade in time.

I am not sure that these are great categories for several reasons. For one, hyperlexia type I is just an early reader. There is really no need to even give it a name. What do you call a child with no delays that jumps twice as high as his peers? A hyperjumper?

As far as type II, the whole idea behind the term, “splinter skills” is one that many people with autism have objected to. It conjures up the idea of a person that is “low functioning” (another not particularly helpful term) that has an interesting, though not particularly useful ability in music, art, math or some other area. The reason that people are surprised at these abilities is because they are presuming “incompetence” and low IQ. It would be better to just say that it is an area of strength, just as any of us may have greater abilities in any particular area. Also, reading is a very important skill, not some “fascinating” ability for people to stop and stare at like a circus act.

Also, I am not sure that hyperlexia type III actually exists. To say that the autistic traits fade in time may just be children that have successfully used reading and other abilities to “catch up” in areas of delay. The problem lies in how we define autism. Currently, it is primarily defined in terms of delays. However, if we could see what it actually is neurologically, I think that many of them would still have some of these characteristics, like my oldest, who has no real measurable delays anymore (falls into “normal” range) but still struggles in some of the common areas affected by autism (language comprehension, reading social cues, and others). We also know that the ability to read can be a tool to help the person move beyond their delays in development, even if they were born with the neurological make up that would describe a person with autism.

I think that hyperlexia can be better defined as decoding skills that are far above comprehension skills, accompanied by a fascination with letters and words. The term can be helpful when speaking to therapists and teachers because it helps them develop a plan to help the child. It lets them know that the written word can be a powerful tool for this child and that comprehension needs to be monitored.

My next son, P, was (is) an even more extreme hyperlexic. He read and spelled out words shortly after he turned two years old and surprised visitors and strangers with his spelling abilities. To this day, his favorite activities involve encoding (spelling) and decoding (reading) words. He also seems to understand language better if he sees it written first. Sometimes it seems that he just can’t find the words to say and he uses his iPad (with the LAMP Words for Life app) to make the sentence and then read it. Because he does have some spoken language, I was unsure if this type of AAC (Augmentative and Alternative Communication) would be useful to him, but it has become an important tool in our communication toolbox and I am so thankful that we have been allowed to use the iPad and app (for now) through his school. I am not sure what will happen next year when we will be homeschooling for a greater percentage of his day.

Some people have seen hyperlexia as a “disability.” Some have told us to avoid spelling with P, so that we don’t “feed his obsession,” even telling us to hide the letters, but I am glad that we learned by then that it was useless. It is just another way that he is his own person, with his own unique strengths and I choose to celebrate those strengths, not squelch them.

Theology of Disability

Having dealt with “disability” in my children in one way of another for the last nine years, I have been thinking for the last few weeks about a “Theology of Disability” and by that I mean: What is disability, from a theological perspective?

I have spent the last few years with some related thoughts running around in my head about suffering and the purpose of suffering. Suffering and disability seem to be inevitably linked. Not that a person with a disability is doomed to a life of suffering and sadness, but where there is a disability, one will most likely suffer because they cannot do something or can only do it with greater difficulty and they will often have to be somewhat dependent upon others. For the great majority of people with a disability there will be some kind of pain – physical pain that one feels and/or emotional pain from isolation or lack of independence.

My first thought was that neither suffering nor disability existed in Eden and it will not exist in heaven, so can it be a good thing? Jesus went around healing people, not telling them that there was a greater purpose for their sickness or suffering (exception being John 9 – the man born blind so that God would be glorified, but he ended up healing him too).

Some of the erroneous views on disability that I have seen and evaluated are:

1. Disability is a mark of sin. It did not exist in Eden and exists only because we are in a fallen world. The predominant Old Testament view of suffering and sickness (like Job’s friends) would be that the individual or the person’s parents had sinned, causing the person pain and suffering, but Job and the man born blind in John 9 contradict this view. We see a form of this erroneous view today in circles where the person with a disability is told that they have not been healed because of their lack of faith.

2. The individual must accept their life as “less than” a whole person. This view would keep the lepers “outside the camp” (Lev. 13:46). It would tell a person with a disability to accept their lot in life as an outcast and be glad that some may throw you a piece of bread once in a while. Matthew 8 describes a leper that dared to come and kneel before Jesus and express his faith that Jesus could “make him clean.” Jesus does not tell him to remember his place; he heals him instead.

3. People with disabilities are in the world to teach the rest of us lessons about _____ (fill in the blank here – kindness, compassion, gratitude, charity, etc.). Surely all of us have learned to be more generous when faced with others that have any kind of need, but that is not the meaning of that person’s existence. Each person has been created as an individual with dignity and worth. This view treats people as non-people that exist as an object lesson for others.

It is clear that while some of these views seem to have a bit of truth linked to them, none of thems acknowledges the worth of the person and their capacity to glorify God within His plan for their lives, which, of course, none of us can do except for by His strength through the power of the Holy Spirit working in our lives. What, then, can we say is a Biblical view of Disability?

1. Any part of life on this Earth that is not as it was in Eden, nor as it will be in heaven is a reminder of the fact that we live in a fallen world.
Just as when we are sick and long for a day with no sickness we are acknowledging that the world is not yet as it should be and there is a desire for a world un-marred by sin. That is a good thing because pain is reminding that there is something wrong with our present state. If we were to go through our entire lives with no pain, we would not have that longing for something better and that “God-shaped vacuum” that causes us to seek Him. If we were unable to feel pain in one of our extremities, we would never know if we were injured or is something was not right and needed to be fixed. Our pain reminds us of our need for God.

2. There is strength in apparent weakness.
It is widely believed that the Apostle Paul lost much of his vision in later years. We don’t know if it was this or another difficulty that he spoke of in his second letter to the church in Corinth, when he said that the Lord did not remove this “thorn in the flesh” because “[God’s] power is made perfect in weakness.” 2 Corinthians 12:9 (NIV)

Listen to the paraphrase from The Message:

Because of the extravagance of those revelations, and so I wouldn’t get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,
My grace is enough; it’s all you need.
My strength comes into its own in your weakness.

Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.

(2 Cor. 12:7-10 – The Message)

Those who have a “disability” have actually been given a “gift.” It is in our dependence on God that we find supernatural strength. I can say that I depend on Him when all goes well, but the more often I am forced to trust in His faithful provision, the more my faith is stretched and the stronger my faith muscle grows. Disability does not always equal a deep spiritual life because the individual has to choose what to trust in, but it is an amazing opportunity for “Christ’s strength moving in on my weakness.”

I know that there is so much more to this topic, and that I have barely scratched the surface here, but sometimes I just have to sort some thoughts out on paper (or PC in this case). I am learning to trust God and I pray that my children will also trust God deeply and develop a profound relationship with Him.

Where am I?

Does the world really need another Autism Blog?
Homeschooling Blog?Faith Blog?

I know that there are plenty of these to go around and I am not sure that I have anything completely unique to say, but I think I may just need an outlet to process the millions of thoughts in my head.

I named the blog hupostasis (faith) because faith is what I cling to day by day, moment by moment.  Faith in what I sometimes do not see, but believe with all my heart.  I believe in the great worth of every human being.  I believe that every individual life has meaning and purpose.  I believe that the goal in life is not to cover over our “shortcomings,” but to allow them to be used by God for his glory.  I believe that people with disabilities are no more “broken” and in need of “fixing” than we all are, but may need a different kind of help to achieve their own goals than others do.

I believe that we are all in transition from what we are now into what we will be and what God is making us to be.  I believe that there is hope for me to become a better Christ-follower, a better mom, a better friend.  I believe that there is hope for my children to become what only they can uniquely be and hope for me to help enable them to become those people.