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

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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.

Competence

I owe much of the thoughts behind this post to Ariane Zurcher, who blogs at “Emma’s Hope Book” (see my “Blogs I Follow” list) and to the documentary “Wretches and Jabberers”, about two adults with Autism who learned to communicate later in life who travel the world encouraging others to think of people with Autism as intelligent. If you know anyone with Autism or if you will at some time (that includes pretty much everyone), you NEED to see this movie. http://wretchesandjabberers.org/

I have been thinking a lot lately about what it means to “presume competence” vs. presuming one to be incompetent. How many stories have we already heard of people with autism that have been assumed to have low IQs according to “experts” and tests, only to surprise everyone later in life when they are given a means to express themselves that works for them? How many more could have done so if they were given the chance? The idea sounds great, but how do I apply it to my own son?

P’s main delay is speech. Because he has not shown that he understands much of what we say, we often speak to him in short phrases, using words that we know he understands. We read books that don’t have many “unknown” words for him (although he may know them and we are just not aware) because we think that is the language he is capable of comprehending.

When I compare this approach to the way we treat R (our third child, who is two years old with no apparent delays) I can see where we may be going wrong and I believe that am holding him back. I talk to R constantly, even with words that I know she may not understand yet, because I believe that in time she will and I don’t limit myself to words that she has “proven” that she knows. What if I did the same with P? What if I assumed that he was capable, instead of making him prove constantly that he could understand? What if the way I ask “test his knowledge” is all wrong? Maybe he is annoyed at my constant quizzing and questions. I think that I would be annoyed!

In the documentary “Wretches and Jabberers,” it is said to be a “paradox” that two men with irregular patterns of movement, struggles with sensory regulation and little audible speech are completely aware of their surroundings and are intelligent, with much to say, but why do we consider it a paradox? Why do we assume that lack of speech means lack of intelligent thoughts? More importantly, what wrong assumptions have I made about my own son? I have never doubted his non-verbal intelligence, but I think I have doubted his ability to communicate.

The documentary also points out that people with autism may need additional supports, and I think that things like visual supports and writing things out are appropriate, but I can’t allow his need for those things lead me to think that he cannot communicate, and communicate well. I am challenging myself to confront my wrong assumptions and start to assume that my baby boy is capable, capable of learning without limits, capable of relating and connecting with others in a deeper way, and capable of contributing to the world around us. One of the participants in “Wretches and Jabberers” is asked if they believed that all people with autism can communicate, or if that was only for some with a “special talent.” His response was that communication is a basic human desire, not a special talent. What assumptions have you made about people around you with disabilities? Wipe the slate clean. Presume competence.

Who’s Afraid of the Big Bad “A Word”?

I almost named this blog, “Who’s Afraid of the Big Bad A Word.” I remember the first time I heard it concerning my children. My oldest (D) had an evaluation by Early Intervention for a speech delay when he was barely a year old and I remember that there was a Developmental Therapist and Speech Therapist at my house and they seemed to be trying to tell me something without telling me it directly. After observing him they exchanged knowing glances and mentioned how he constantly ran into the sofa and other objects. They pointed out his lack of sustained interaction and eye contact. I really didn’t know what they were getting at, but they recommend an evaluation by an Occupational Therapist and repeatedly used the term “sensory integration.” I locked the term in my memory and rushed to my PC to look it up as soon as they left. I found that it was almost always used when talking about Autism. “Autism?” I thought. “Well that can’t be right.” I read more and worried more and waited for the OT evaluation.
When the Occupational Therapist came to do the evaluation, she continued with the “sensory” talk, but assured me that it didn’t mean that he was Autistic. She, of course, could not make a medical evaluation anyway, but there began my journey that would change my life forever. Occupational therapy, Developmental Therapy, Speech, Floortime, tens of thousands of pages of books, countless internet sites, videos, evaluations, hyperlexia, IFSPs, IEPs, and hundreds of other acronyms familiar to the exclusive “Autism Mom” club members. There was no “cure” and for me, at that time, that meant that “experts” believed there was no hope. For some “experts” that is exactly what they meant. After six months of intense speech therapy failed to produce even one spontaneous word or sign and little, if any, understanding of speech, I was told that my son may never speak. Well, his the story of his journey “off” the spectrum (maybe, maybe not) is for another day, but he did learn to speak and quite well, thank you very much.
When our second son (P) seemed headed for a similar diagnosis, we had little fear of the “A Word.” We knew what to do and he would be just “fine” also. We worked and read and took him to therapies, just like we did with our oldest, but he didn’t make the same progress. He was hyperlexic, like our oldest had been, but even more extreme, and was reading and spelling shortly after he turned two. He was so smart. Of course he would make amazing progress! Well, he has and he does make great progress and he is very smart, but he is still definitely on the spectrum. However, I don’t say that as a disappointment, like I would have ten years ago. I realize that he has his own set of challenges and his own unique set of strengths. Do I want him to talk? Yes. Do I want him to stop being Autistic? Not necessarily. My hope for him is that he can do what he wants to do and my hope for the rest of us is that the world will value him for who he is and not judge him by what he cannot yet do.
reading a book

sleeping with a giant book

unique solutions

spelling makes me happy

words all over the house always