Pervasive Parenting: September 2012

Sunday, September 30, 2012

Land of Confusion

Pervasive Parenting

By Kodey Toney

Land of Confusion

Have you ever tried to put together a piece of furniture, child’s toy, or a bicycle and found the instructions with photos, but the words were in a different language? This is kind of what I felt like when I was recently presented with Oklahoma State Ballot Question 765. I have been trying to make heads or tails of it, but must say that it is very confusing. Of course most state questions are confusing, but this one seems to be strangely worded. I’m going to try to help others understand this and give my opinion on the issue.

Let’s start with the wording of the question. According to the State Election Board the ballot will state:

“The measure amends the Oklahoma Constitution. It abolishes the Oklahoma Department of Human Services, the Oklahoma Commission of Human Services and the position of Director of the Oklahoma Department of Human Services. These entities were created under different names by Sections 2, 3 and 4 of Article 25 of the Oklahoma Constitution and given duties and responsibilities related to the care of the aged and needy. The measure repeals these sections of the Constitution and consequently, removes the power of the Commission of Human Services to establish policy and adopt rules and regulations. Under the measure, the Legislature and the people by initiative petition retain the power to adopt legislation for these purposes.

The measure adds a provision to the Constitution authorizing the Legislature to create a department or departments to administer and carry out laws to provide for the care of the aged and the needy. The measure also authorizes the Legislature to enact laws requiring the newly-created department or departments to perform other duties.”

One of the major issues with this is the fact that it will abolish the Department of Human Services. Now I know many people will think that this would be a good thing. We think of some of the bad things that we’ve seen come out of the DHS, or we have issues with getting services through them. However, I’m not sure this is the answer. This is like the old saying, cutting off your nose to spite your face.

This is, after all, how all of this started, if I have my facts straight (and let me be the first to say I may not, but if you can explain it better to me then feel free). According to okpolicyblog.org, this question came about following a negotiated settlement of a child welfare lawsuit against the DHS. The terms of the settlement included improvements to the child welfare system. House Speaker Kris Steele stated in a recent article in the Tulsa World that “the system has been struggling under an outdated ineffective governance model that has tended to isolate the agency from any real accountability.” In order to find that accountability the Legislators decided to put this question in place for November’s ballot.

The problem is that if the question passes then the state will do away with the DHS, or at least it could.

When this all began it was just to help find accountability for the child welfare section of the DHS. Now we’re going to get rid of the entire agency? Does anyone else think this may be a little too harsh of a punishment? I mean there is more to the DHS than just the child welfare department. There is Temporary Assistance for Needy Families (TANF), there is child support, adoption, nutrition assistance, utility assistance, SoonerStart, and of course help for people with developmental disabilities. This is where Jennifer and I applied and were accepted on the TEFRA program. If we abolish the DHS then we are basically doing away with, or at least potentially, all of these programs that help many people throughout the state.

While there are issues with the DHS they are still very useful. There are also very good people who work for the program. I feel that the child welfare needs to be reworked, but not torn apart and reformed.

I also don’t mind holding the government accountable for the agency. This isn’t a horrible idea, but I’m not sure that this is the way to do it. The government may not actually abolish the DHS, but the fact that they could if we have 2/3 of the voters approve it just leaves more questions.

Many other state officials are pushing to pass this question. I don’t think they are putting the whole picture into perspective for people though. Rep. Jason Murphey; recently told the Guthrie News Page: “State Question 765 abolishes the unelected commission which has overseen the Department of Human Services, and makes the director of the department directly appointed by and accountable to the Governor. This is a needed reform because it would allow the voters to hold the Governor accountable for inappropriate actions by the department.” This is not untrue. However, he doesn’t explain the part about abolishing the DHS.

Okpolicy.org makes a little more sense of this in the following statement: “(The question will) do away with DHS as currently structured and (give) the Legislature authority to create an agency to perform the functions carried out by DHS. But, according to the wording you may not know that the Legislature would transfer the Commission’s powers to the Governor.”

There is no clear sense of what the DHS will be replaced with. This leaves doubt about the department’s future because the Legislature’s gave ambiguous legal language. They are not specific enough.

Whatever the merits of the change in governance structure, the choice being presented to voters creates an unfortunate level of confusion and uncertainty.

The reason I even write about this is because it could affect many people with disabilities, or children with disabilities. I only ask two things; please vote on November 6, 2012, and please do your research before you do.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column. You can also find all columns archived at blogspot.com.

Sunday, September 23, 2012

Normal Like You

Pervasive Parenting

By Kodey Toney

Normal Like You

All too often as parents of children with disabilities we look for the quick fix. I can’t tell you the number of diets, vitamins, minerals, gadgets, therapies, etc., that we have tried in order to help Konner be more “normal”. There are so many issues with that last sentence that I can’t even tell you where to start. There have been many things in the past couple weeks that have made me think about these issues. This week I just want to focus on; What is normal?

In my attempt to gather information and shed some light on the situation I only complicated things for myself. This is because dictionary.com has several definitions of the word normal. I thought each of them were very interesting and yet condescending to the thought of children with autism being “abnormal”.

The first definition states: “Conforming to the standard or the common type; usual; not abnormal; regular; natural.” Ok, where do I start to break this one down? How about the beginning? We work really hard with occupational therapies and speech therapies to help our children conform to the standard of the “common type” that we forget that they are unique. Don’t we constantly tell our neurotypical children to be themselves, and yet we try everything to make our children with disabilities be like everyone else. Besides, I’ve seen some of the “normal” people out there. I like my child with autism. He doesn’t really lie, isn’t sarcastic, and is usually quiet unless something is bothering him (in other words he’s nothing like me). I love Kruz to death; I wouldn’t give him up for the world, but he’s my neurotypical kid, and sometimes his “common” activities drive me nuts.

The second definition states: “Serving to establish a standard.” With 1 in 88 children being diagnosed in the United States I think we need to reestablish the standard. Don’t forget, that is 1 in 88 diagnosed with autism, but what about the other intellectual and developmental disabilities? Isn’t it time we realize that disabilities are normal?

I believe this way of thinking is what is wrong with our society today. We had a guest speaker last weekend at the Partners in Policymaking class. Al Condeluci, PhD, spoke to the class about how we should think macro and not micro about inclusion in the community. What this really means is this; we work so hard to help our children with their therapies and trying to get them to conform to the normalcy of the community. This could be the school community, or the world at large. Either way we try to get them to act like, work, and even think like the majority. What we should be doing is helping the majority accept and understand people with disabilities. When people think that our children should go to a special school it makes me wonder, what is wrong with changing the school that he is in to be more understanding?

As I said last week, this truly is a civil rights issue. We shouldn’t look at people with disabilities as being handicapped or “retarded”. We should be looking at them for who they are; truly extraordinary people. They deal with more in one day than most do in a year.

This next one was interesting to me. The definition has a heading of Psychology. The first definition under this heading was: “Approximately average in any psychological trait, as intelligence, personality, or emotional adjustment.” Okay, so as far as intelligence that is debatable. With many children with autism they have extraordinary intelligence. In fact, the less verbal people with autism are usually proven very intelligent once they find a way to communicate that aptitude. They also have more personality than most if you take the time to know them. There are very few people who don’t fall in love with Konner once they spend a little time with him.

The next in this subheading said: “Free from any mental disorder; sane.” Well, whose definition of sanity do we want to go with? That’s a whole other column altogether. However, if you look at the definition (since that is what we’re working with today) of autism it is a neurological issue. This differs from a psychological disorder.

The next is a definition under a medical heading that states: “Free from any infection or other form of disease or malformation, or from experimental therapy or manipulation.” Konner has never had a serious disease, malformation or infection that caused his social or sensory issues. This is why it is crazy that we try to “fix” our children with autism. There is nothing medically wrong, yet we still try to find a clinical fix for them. We should just be looking for was to help them cope with the issues that they will face. This is why the therapies are important.

The second part of this is: “Of natural occurrence.” Okay, this may be the loophole we’ve been looking for. I’m not sure this is what they mean by the definition, but Konner’s autism is a natural occurrence. It happened naturally, as far as we know. So by this definition Konner truly is normal then.

Now that I’ve proven that point, I feel that the bottom line is that we really need to change the attitude of the world not our children. It all starts with us.

Sunday, September 16, 2012

Pervasive Parenting

As promised before I’ll share with you some of the things I’ve learned in my first class of Partners In Policymaking. There is so much, but I have my next three weeks worth of columns lined up already.

The first thing I want to share is People First Language. I’ve talked in the past about using the “R” word and how disrespectful it is. Though calling someone retarded should be a thing of the past it is still used in everyday language. However, I learned this weekend in class that this is not the only negative way to address someone with an intellectual, physical, or developmental disability.

When talking about our children with disabilities we tend to lead with things like, “My autistic son” or “My disabled child.” This may not seem like such a big deal, but it tends to label our children. We take away their true identity. After all, how do we want our children to be remembered? Aren’t we fighting for equality in our children, and then turning around and making sure that everyone knows they have an issue.

The Oklahoma People First website states: “Language is power. Our words have the power to inspire, motivate, and uplift people. They also have the power to hurt, isolate and oppress individuals or entire segments of society. Often times, throughout our history, it has become necessary to change our language and the way in which we refer to individuals and groups to avoid further oppressing those members of society. The time has come to reshape our language once again so that we may refer to people with disabilities and the disability community in a respectful and inclusive manner.”

The suggestion by our presenter Diana McCalment was to only use the disability if you need to. If you are just talking to someone about your child you can introduce then as, “Konner, my seven year old. He’s in the second grade. He loves Thomas the Train and making mud pies.” If you throw in the sentence, “He’s autistic,” it is unnecessary to the conversation. However, if you are talking about autism you might say, “My son Konner, who has autism.” Always put the person first – hence the name.

The principle is that the emphasis should be on people, not the disability. People with disabilities are still people. They have enough in the world to conquer without having to deal with labels.

Another example would be, if Jennifer was to tell people what she does she wouldn’t say, “I’m a special ed teacher.” She should say, “I teach children with learning disabilities,” or “intellectual disabilities,” or “developmental disabilities.”

When trying to use People First Language, some key terms and words to avoid, according to the OPF site, include:

Invalid
wheelchair-bound
mongoloid
deaf and dumb
defective
mute
crippled
special person
suffers from
handicapped
stricken with
a patient
retarded
afflicted with

Other suggestions taken from the site include:

Do not refer to a person’s disability unless it is relevant to the conversation.
Use the word "disability" rather than "handicap" to refer to a person’s disability. Never use "cripple/crippled" in any reference to a disability.
When referring to a person’s disability, use "People First Language."
Avoid referring to people with disabilities as "the disabled, the blind, the epileptics, the retarded." Descriptive terms should be used as adjectives, not as nouns.
Avoid negative or sensational descriptions of a person’s disability. Don’t say "suffers from, a victim of, or afflicted with." These portrayals elicit unwanted sympathy, or worse, pity toward individuals with disabilities. Respect and acceptance is what people with disabilities prefer.
Don’t use "normal" or "able-bodied" to describe people who do not have disabilities. It is better to say "people without disabilities," if necessary to make comparisons.

This all seems a little crazy at first, and some may call it political correctness. I call it humanely correct. What we are trying to do in this society, or should be as parents, is fight for equal rights. It is a civil rights issue. With the rapidly increasing diagnosis of children with autism the issue of rights is going to grow.

Think of it this way; our main goal as parents, or at least one of them, is to allow our children to live as “normally” as possible. This is why we fight to have them mainstreamed in the classroom, to have them participate with others in social activities, and why we just want them to be accepted by their peers.

One way to allow this to happen is to lead by example. If we are talking to someone, whether they are our children’s friends, other parents of children with intellectual disabilities, teachers, or just the woman next door, we should use People First Language. If they use incorrect terms we shouldn’t automatically correct them, this would only come off as offensive or rude. We should give them back the right answer. McCalment used this as an example (I’m paraphrasing): If a parent says, “My autistic child needs services,” you should come back with, “Oh, your son who has autism…” or “Your child with intellectual disabilities…” If you use this enough you will start a trend, so to speak.

Again, I know that this may seem a little over the top for some. Trust me, I feel this way a little. After all, it doesn’t bother me to hear that I have an autistic son, but then there were a lot of words used to describe African Americans that didn’t seem inappropriate prior to the 1960s. Even mental retardation wasn’t a bad phrase a decade or two ago. Now many of us hear that and cringe. Just something to think about.

For more information on People First Language you can visit the Oklahoma People First website and there is a link to the language at http://oklahomapeoplefirst.org/language.html. They have some other suggestions of words to replace. Be pervasive and spread awareness.

Pervasive Parenting

Classes are in full swing. With that I want to share some information I received in an email from Wrightslaw.com. If you’re not on the email list for them you need to visit the website and subscribe. There’s tons of good information sent out regularly from this site.

A recent message included tips for a successful school year. Some of this I have shared in the past, so I’m only going to share the ones I haven’t hit on already this year. I hope there is some information you can use to make the year go more smoothly.

Reread your child’s IEP.

If you don’t know what is on your child’s IEP how are you going to know if your child is receiving all they should be? Visit with the teacher. Make sure they understand what is expected of them, from you, and from your child. This sounds so simple, but you would be surprised the number of times that your child’s lack of services or help is just a lack of communication. So many times we get the idea that it’s us against them. That is the wrong attitude. It is a team, so make it a team effort. You be the leader.

While you’re at it you need to make sure that the teacher has a copy of the IEP. If your child has a communication notebook (I’ve talked about this in past articles), make sure that the IEP is included in there.

Another thing I would do is check to make sure that your IEP has actually been changed. If you talked about it in the meeting then it should be changed, but don’t assume that it will be. I would make a list of all changes that should be made, and then double check to make sure it was actually done.

Make a List of Important Things About Your Child .
I think this is a great idea. Jennifer actually took this a step further and wrote a letter telling about Konner and what he likes and dislikes. This gives the teacher a little insight into what kind of child he is. It gives them some personality and not just a label (autism). The teacher can see that in many ways they are just like other kids. They have similar tastes.

Prepare to Deal with Potential Problems Early.
The sooner you can get to potential problems the sooner you can move on and have a “normal” school year. If you address problems early it can also give the school, teachers, child, and yourself time to adjust.

Resolve Old Concerns and Issues.
If you have concerns or issues that were not resolved during the last IEP meeting, request another IEP meeting immediately. Try to resolve these issues and concerns before your child begins to have problems this year.

Get a New Assessment. “Consider getting your child's skills tested very early in the school year. Where are your child's skills on standardized educational achievement tests? Use these scores as baseline data. You can compare these scores with scores obtained at the end of the year to measure your child’s progress.” It’s always good to know where your child stands academically.

Make a communication notebook. Again, I’ve written about this in the past, but you can use the notebook for many different things. Wrightslaw.com talks about using “the notebook as a “contact log” to send messages to the teachers. Write a sentence or two to the teacher(s) every day. Do not make your child the bearer of messages about problems at school. Make an extra copy of your log often in case the notebook is lost.”

This is also a great place to share with the occupational therapist, speech therapist, paraprofessional, etc. You have to keep communication with everyone. There is no other way of knowing what is going on with your child unless you are there beside them all day, which we all know is not an option for most of us.

You want to makes sure that you correspond too though. Don’t think this is just a place for the teacher to let you know what is going on at school, or the therapist to keep you up to date on what is happening in sessions. You have to let them know what you are doing at home. Jen is really good at keeping a daily log of what Konner does at home. This lets others know that we are helping him, but it also keeps a good journal to use for data. For instance we knew that Konner was having a tough time on Wednesdays, so we looked back to help us determine if there was something special happening on Wednesdays. We found that Boy Scouts was that night and was throwing his scheduling off a little. These are the little things that can help you help your child have a smoother day.

Again, I hope that this information is helpful. Make sure that you visit www.wrightslaw.com and subscribe to the email. The amount of advice they give for IEPs is unbelievable.

In addition, if you type in IEP cheatsheets into a search engine you will come up with lots of information. There is also an app for iPhone and iPad called IEP Checklist with information to help make the meetings better. Both give some information about what you really need to include as well as things to expect from your IEP team.

Sense and Sensibility

When you purchase an item, usually an electronic device, it comes with a manual. This manual tells you what you need to know to get the contraption working and running fast. There is also a section, usually located in the back, for troubleshooting problems with the machine.

It’s too bad that children don’t come with these manuals, right? This is especially true for those with sensory issues. That’s been said many times throughout the years, but now there may be a manual for those who live with problems related to their senses. Granted, it’s not the most extensive guidebook, but it will help in understanding these problems, especially for parents of children who are newly diagnosed.

The Autism Sparks page, which I wrote about last week, has recently posted a link to the PDF file “Making Sense of Sensory Behaviour: A Practical Approach at Home for Parents and Carers”. As you may be able to tell from the title this is a pamphlet out of the United Kingdom by Lesley Beath & Lindsay Park of the Children with Disabilities Team.

The link to the pdf file is located:

http://www.falkirk.gov.uk/services/social_work/children_and_family_services/support_for_children_affected_by_disabil/making_sense_of_sensory_behaviour.pdf. Now that’s a long address, but you can also find it by just going to the facebook page or trying a search on Google or Yahoo.

So what does this article have? There is an explanation of what sensory issues are and how they affect children. It gives some signs to look for in a child to know if they might have sensory issues. Finally it gives advice of what you should do to help calm the child.

I’m going to hit on some of the good points in each category to help you out. I would recommend checking out the site for a more in-depth resource.

The first part explains two sources of sensory input. There is the internal that comes from within our bodies, and the external that comes from outside sources. The following clarifies these a little better:

“Internal Environment.

• Sitting for a prolonged period on an uncomfortable seat –‘the feeling’ of being uncomfortable/unstable, the chair digging into legs, perhaps making us feel sore.

A typical Response:-

• Fidget to get into a more comfortable position or getting up from chair.

External Environment.

• Being in a busy classroom. Noise from other young people, chairs dragging on floor, people walking past classroom door.

A Typical Response:-

• Difficulty concentrating on what teacher is saying. Tendency to focus on one sensory input (e.g. watching people outside the classroom) rather than filter out what we do not need to pay attention to at that time.”

It goes on to explain that if we can begin to pinpoint these sensory inputs that work overtime on the nerves of our over or under sensitive children then we can help them live with less stress in their lives. This can cut down on meltdowns and other behavior issues. If you can cut down on the things that send our children over the edge they are less likely to have these problems with conduct.

The good part about this is that there is a section about how to read the signs that your child has sensitivities. This section includes things to look for in over and under-sensitive children. The list has hearing, vision, taste/smell, touch, movement, and body awareness. An example would be; for Low Sensitivity the child may enjoy really loud noise, and/or fail to pick up expected cues.

The calming strategies are the real informative and interesting part. Now some of these I have seen or used in the past. For instance: “Sitting under a big blanket”. Konner does this often. He doesn’t sleep well without a heavy blanket on top of him. Another is “Hands on head and pressing down”. This is part of the joint compressions therapy that I have written about in the past. Also, “Snuggling into a small place or corner” is recommended. Konner loves to get into tight spaces that would make most claustrophobic.

Some that I had not heard of though included “Sucking a ‘sweet’ sweet”. This is for a person with taste sensitivities. Another is “Sucking yogurt or a milkshake through a straw”. Lavender scents are also a calming activity. Now I did know this, but I had never thought about it for stimulation issues. They also suggest that you take a walk after school with a backpack on to help unwind from the day. Heavy manual tasks such as working the garden and digging can help as well.

As I said these are only a few ideas to help, but I thought this was a great resource to share. I hope that it helps you find some ways to help your child relax when they are have a strenuous day.