Help, I Need Somebody

Pervasive Parenting

By Kodey Toney

Help, I Need Somebody

If you have a child with a disability, whether it is a developmental disability or a learning disability, chances are you’ve had to meet with your school to come up with an Individualized Education Plan (IEP). Those words seems to send different emotions through parents when said out loud. Anger, fear, anxiety, tension, and distrust are all common feelings prior to an IEP meeting. One of the main reasons behind this is usually the lack of knowledge and preparation on behalf of the parents. However, it doesn’t have to be this way.

I have talked in the past about different ways to prepare for a meeting, and how to act while in the meeting. The us-against-them idea is overwhelming, and it is usually imposed by both sides. If you have a good mediator in the room who is looking out for the best interest of the child (which is where the focus should be), and can make sure that you keep on track and stay within the guidelines you will usually have a more productive and less stressful meeting.

This is where an advocate comes into play. There are tons of rules and regulations involved in advocating for your child. You as the parent are your child’s best advocate. However, there are times when the IEPs, IDEAs, 504s, and FAPEs can be too much to comprehend; especially when you feel like the people across the table are out to get you. If you have someone who knows the rules, and has some experience with these types of negotiations you will most likely have a better outcome.

So what is an advocate? One definition states: “Advocate - helper: somebody who acts or intercedes on behalf of another.” This means that they first and foremost are a collaborator. They don’t take over the meeting. They sit back and mediate. They only intervene if there is something that seems to not be going the way it should. You have the right to have an advocate in your IEP meeting.

Part of my training in Partners in Policymaking was on advocacy skills. One of the things we were taught was that it is not an us-against-them mentality that gets you to where you need to be. You have to first go into the meeting and lay all the cards on the table. Explain what you want, what your fears are, and what you think needs to happen to get there. The other side “should” do the same.

Again, I know all of this sounds great in theory, but an advocate can help. Sometimes you’ve dealt with the school so long that it is good to bring in a new face. Many schools are not used to someone who is educated on the regulations, and let’s face it; many schools don’t really know the regulations even though they should. That is not a knock to the schools, it’s just that often times they have not had to deal with these issues and need to be educated or refreshed.

There are several places to look for advocates to help out. I am an advocate and have worked with several families in the area already through the Pervasive Parenting Center. I would offer my services free of charge to anyone in the area. This includes consultation on a current IEP, or mediating an upcoming IEP. If you need help feel free to contact me at pervasiveparenting@hotmail.com.

Of course there are others that I would recommend as well including the Oklahoma Parents Center. You can contact them by visiting their website at http://oklahomaparentscenter.org/.

Another great resource, especially if you think you are not getting what you need legally, is the Oklahoma Disability Law Center. They are free as well. They are the organization that offers the Wrightslaw conference every year. This is a conference that Jen and I went to last week. It is our second conference and we learn so much good information each time about disability law. You can find them at http://oklahomadisabilitylaw.org/.

Again, make sure that you are getting what you can to help your child, and if you feel like you’re not find someone who can help you.

You're Beautiful

Pervasive Parenting

By Kodey Toney

You’re Beautiful

I often talk about what we can do to help our children who are coping with disabilities. I say that we must be the advocate for our kids and that is the most important job you have. I truly believe this, but once you do this for so long it can cause wear and tear on you both mentally and physically. I came across a post on a friend’s Facebook recently, and while I think I have probably written about this subject in the past it is good to revisit it because it is very important as parents to take care of yourselves. If you breakdown then you can’t help anyone. This article explains what you as a friend, family member, co-worker, or outsider can do to help a parent of a child with special needs.

This article, which is from a blog called “Beautiful In His Time” which is written by a woman named Aprille (I couldn’t find more than this). She has some great advice, and I’d like to share some of it with you including my take on it a little. I’m paraphrasing some of this information.

1. “Express that you care her as a person, as a fellow mom who is just like you. That you care about her child and the special needs that her child has.” There is nothing more important to anyone than to know that they are valuable. There are times when you wonder if what you’re doing as a parent is really the right thing, and there are times when you know you’ve done the wrong things. It’s very nice to have someone let you know that you are doing a good job.

2. “Don’t forget that she’s a mom and a woman – just like you are. Treat her like a normal mom, not some freak of nature.” We often get caught up in the disability world, and especially those from the “outside” think, “Oh, it takes a special person to cope with what she’s going through.” Well, underneath that often-tough exterior there is a normal mom just like most others.

3. “Include her AND her special needs child. Invite them to play dates and birthday parties. Take her out for coffee and invite her to your girls’ outings. Sit with them at church.” Just like kids in school, parents of special needs children just want to be treated the same as anyone else. We often feel like we’re outsiders because we tend to watch our children a little closer and become overprotective. We are seen as recluses because we typically don’t like to go out in public too much unless we have to. It’s a great feeling to know that someone has given you a chance to “fit in” at a get-together. Don’t be surprised if they turn you down, but keep inviting them. They may be just a little apprehensive.

Aprille writes - “It might be stressful. You and your children will probably make “mistakes” when interacting with her special-needs child. But you will never learn how to act around them unless you try. And I promise you, that taking the time to do so will mean so much to them that they will be much more understanding of your mistakes than if you had kept your distance.”

4. “Ask her questions. You will probably never fully understand her life, but at least try to show an interest in what she goes through on a daily basis.” Besides showing interest, which is a great thing to anyone, it gives her a chance to vent. This is one of the greatest forms of therapy for a parent to let others hear you. Don’t be surprised if tears come. Just listen and try to understand.

5. “Learn her language. She might speak in acronyms like IEP, ABA, ASD, and SPD. Ask her what they mean.” There are so many different “letters” out there that it’s hard to understand even for someone who studies them like me. But if you ask questions then you will begin to learn. If you have a questions chances are someone else does to, don’t be afraid to ask.

6. “Keep advice to yourself. This is probably where people make some of the most hurtful comments to a special-needs mom.” We are constantly hearing advice, both good and bad, from all sides of the issue. As I said before, we know we’re doing good and bad parenting from time to time. The last thing we need is someone telling us this. What we need is someone to listen to our problems. If they ask for advice then it’s your time to deliver, but even then proceed with caution.

7. “Don’t invalidate or downplay her hardship by saying “oh, my child does that too.” Holy cow this is the worst thing in the world for me. I get irritated when I hear a parent complain about their neurotypical child having a “meltdown”. Your child can be crazy, I have a child who is neurotypical, I know. Don’t forget what that child goes through on a daily basis with sensory issues or neurological problems.

On the other hand, for my parents of children with special needs, don’t over-do your side of things. I have had to watch myself on this one in the past. Everyone understands that your child has issues. Don’t remind them every time they talk about their child. Don’t be that parent who says, “Yeah, but my kids has autism,” or “Try it with a child with autism.”

8. “Refuse to compare your child’s development to hers. When she announces that her child finally said a sentence, or went potty, or started walking – and your child did it 10 months ago – keep. your. mouth. shut. and simply rejoice with her.” Our goals, obstacles, and milestones are always going to be different. Don’t throw it in their face that their child has delays. If it doesn’t seem like a big deal to you don’t forget how hard that child and parent had to work to get to that point. It probably wasn’t as easy with their child.

9. “Offer tangible help. Offer to babysit and ask the questions or get the education needed to know how to babysit her child.” Nothing can mean more to a parent than a couple minutes of “me time”. Again, don’t be surprised if you are turned down a couple times because they don’t want to leave their child with just anyone. Keep offering and explain that you want them to teach you how to care for their child.

10. “Pray for her and her child. Pray for healing for her child or improvement in her child’s functions and behavior.” I’ve talked in the past about how important it is to keep God and prayer in your life. If you have someone else praying along with you it can work wonders.

There is a ton of great advice in her blog, and I cut some of it down. I’m going to include the site address so that you can get the full article: http://beautifulinhistime.com/2013/06/10/how-to-encourage-a-special-needs-mom/.  

 

It's Not What You Want, It's What You Give

Pervasive Parenting
By Kodey Toney

It's Not What You Want, It's What You Give

Growing up I was the younger brother. My sister would push me around, beat on me, and sometimes encourage me to do things I shouldn't, at least until I got bigger. I would say this is pretty typical with siblings. However, I noticed recently that our household was a little different. I'm not sure if this is true in all homes with a child on the autism spectrum, but it is around here.
Let me start by saying that Kruz is your typical little brother. He's just like I was as a kid...ok, I'm still a little like this. Kruz pesters, picks, and annoys with the best of 'em. He can get on anybody's nerve in the blink of an eye. This goes double for Konner, especially when he's already over-stimulated.
In fact, as I'm writing this Konner is in the other room screaming, "Go away! Stay away from me!"
Kruz tends to take over the role of the elder sometimes though by bossing Konner around. He manipulates his brother into doing things he either shouldn't or doesn't want to do.
This morning I was sitting in bed when Kruz came in to inform me (tattle) that Konner had said a bad word. I called Konner in to discipline him and then sent him on his way back into the living room. A couple minutes later I went into the living room on my way to the kitchen. As I approached the living room from the hall I heard Kruz tell Konner to, "Say it again." He was encouraging Konner to say cuss words, and then coming in to tell on him.
I just shook my head a little.
Now, before I'm judged too much, let me explain that I don't say bad words around the boys for obvious reasons, but with Konner's echolalia (repetitive speak common in children with autism) I have always made a conscious effort to watch what I say. He has learned most of this from the computer and YouTube.
This is usually accessed on his iPad which we purchased because there are so many great tools and apps that can help kids with autism. This is "Konner's" iPad. We have bought Kruz a Nabi, tablet, and he had an iPod touch. He only wants the iPad. Because of this he will talk Konner out of it. Konner will be in the middle of playing, and if I turn around for just a second Kruz will have it and Konner will be looking for something else to do. He does this with other toys too.
Kruz said the other day that he thinks they are all his toys.
That's not to say that Konner can't hold his own. He will make sure Kruz only gets something when he really doesn't want it. Konner will fight for something if he needs to.
I know that Kruz is taking advantage of his brother some, and address this when I can, but I also know that they are just being brothers.

Down Through the Chimney With Good Saint Nick

Pervasive Parenting 

By Kodey Toney

Down Through the Chimney With Good Saint Nick

In a recent browse through Facebook I came upon a funny holiday themed list that I felt was great for a Christmas column. The list is “Reasons Why Santa Has Autism”, and while not all of them pertain to Konner, many struck a nerve because they reminded me of things through the years that he does or has done. I’m only sharing those that remind me of him. Since he’s one of the greatest gifts I’ve ever received I’m giving a part of him to you as my present to you this year. 

While this is funny it’s also good to point out that most families cope with these same things. While the saying is, “Once you’ve met one child with autism, you’ve met one child with autism”, you still have many little quirks that make them very similar. 

So let’s get to the list:

1.    He lines up and names his reindeer over and over again. When Konner was younger he would line up everything. He would pair up shoes and stretch them throughout the length of the house. His toys were always lined up from Hot Wheels to his Thomas Trains. I went into his room earlier this week and he had all his trains lined up across his floor. I find this to be pretty common among those on the spectrum. 

2.    He wears the same clothes every day. Ok, Konner has never really done this, but that’s probably only because we never let him. My guess is that he would never change if he were given the chance. Most children with autism become attached to a certain shirt or pajamas. This is typically because they have sensory issues, and if they can find a piece of clothing that doesn’t feel like it’s ripping their skin apart then they stick to it.

3.    He has an extremely limited diet of only milk and cookies. Konner doesn’t have a sweet tooth like the big man, but he does get stuck on certain foods. There were about two years where he wouldn’t eat anything for lunch except for Lunchables. He has to have chicken and French fries when he goes to a fast food restaurant. He is a very picky eater, but it has gotten better. Many children on the spectrum are this way, and it boils down to the texture most times. There are things that don’t feel good to them so they stick with what they know is fine. 

4.    He gets stuck in the same routine year after year. Konner is a creature of habit. Routine at school and home are his way of keeping his sanity. He has to take a bath around the same time each day, then follows getting dressed, andfinally going to bed. Times vary slightly, but they have to be very close to the same time. Thesame thing threw off his day at work the last couple years. When they had stations they would change and it would make him upset if he didn’t have a warning. 

5.    He avoids social interaction and does all of his does all of his work at night when everyone else is asleep. Well, we all know that social and language skills are the issues associated with Autism Spectrum Disorders. As for the night work, not so much. Konner is usually asleep, or at least in bed, by 9 p.m. 

6.    He checks his list over and over and over…Ok, Konner doesn’t necessarily have Obsessive Compulsive Disorder, but he does get upset if something is missing and he can’t find it quickly. He will go into meltdown. However, OCD is a common issue in people on the spectrum.

7.    Everything is black or white (naughty or nice) there is no in-between. This comes from being very literal. He gets upset when you say something and it wasn’t something he actually said or felt. For instance, if you said, “Konner is mad,” he will get very upset if it is not how he really felt. He will scream, hit, and possibly meltdown and yell, “You said the wrong thing!” This is a big problem with him lately. 

8.    He loves squeezing into tiny spaces (chimneys). Konner loves to be compressed. This is common. In fact, anyone who has watched “Temple Grandin” the movie will remember the “squeezebox” that she created. The pressure is great for people who are under-sensitive to touch can use this to feel their extremities. Weighted vests and blankets are examples of everyday tools used for this pressure therapy. 

9.    He’s clueless about the social stigma of creeping into other people’s houses. I wrote a little time ago about Konner disappearing in my grandparents’ apartment building. He was found on the top floor and had been trying to open all of the doors on the way up this four-story building. He would have probably gone inside if they hadn’t been locked. He just didn’t understand that this was not socially accepted. 

10.    He does things that amaze people and leave them wondering how in the heck he did it. This happens almost every day around here. He can get past any security measure we have tried on the iPad and computer. He is a math wiz and can read exceptionally well. He creates some things on Minecraft that amaze me, including an entire Bikini Bottom scene that resembles the fictitious Sponge-Bob town. 

While the big guy from the north may be similar in some of his issues I feel that my son is the amazing one. I know that Santa can do extraordinary things in one night, but he has lots of help and doesn’t have to deal with this year round. Konner is truly amazing and has an everyday problem. He is magic to me. 

Carry On My Wayward Son

Pervasive Parenting
By Kodey Toney

Carry On My Wayward Son
...
I've been bringing a series of columns lately featuring the book “The Reason I Jump” by Naoki Higashida interpreted by David Mitchell. This is a book written by a teen from Japan who is on the spectrum. He gives some insight into what it's like living with autism. So let's carry on with more.
We have probably all noticed, whether on television or in real life, when people encounter someone with a disability we tend to change our tone. I think about a scene where someone is meeting a blind person and the first thing they do is start talking louder. I know this may seem silly, but it happens more than you would think. The person's hearing is not bad, in fact it's usually heightened, so why would we do this? We don't mean disrespect. We just feel like we're trying to help.
The same thing often happens when we meet people on the spectrum. This can come in many different forms, and though we think we're helping, as Naoki shows us, it actually is hurtful.
While many people may speak louder to someone with autism, one of the most common communication modifications is baby talk. We tend to talk in gibberish or speak the way we do to newborns.
In the section “Do you find childish language easier to understand?” Naoki addresses this issue. The answers he gives are not surprising if you think about it.
He explains that talking to someone on the spectrum is like talking to anyone else. Wow, what a concept! Let's treat everyone the same? Crazy idea, I know.
Let me start by saying that I never talked baby talk to kids. Besides finding it demeaning, we have to remember that children are followers. They mock what they see and hear. This can actually cause speech issues in the long run, and that's with any child, but especially someone on the spectrum.
Naoki said that he just wants to be spoken to according to his age and issues. He said in the book, “I’m not asking you to deliberately use difficult language when you talk to people with autism—just that you treat us as we are, according to our age. Every single time I’m talked down to, I end up feeling utterly miserable—as if I’m being given zero chance of a decent future.” And this is a person with low-verbal skills.
I think of my dad. He has hearing issues, so we all know to talk louder around him. However, most people don't know that, so they speak normal and he can't hear them very well. Someone usually has to tell them to speak up and all is well. This is the way we should treat someone with a disability. Until you are asked to change your communication just be natural.
The last thing you want to do is hurt someone's feelings, but often times we inadvertently do so just by trying to be compassionate. Naoki says, “True compassion is about not bruising the other person’s” self-respect"
This is something to think about

Have Yourself A Merry Little Christmas

Pervasive Parenting

By Kodey Toney

Have Yourself A Merry Little Christmas

As Christmas comes closer some of you may be scrambling to find last minute gifts. If you’re shopping for a child on the spectrum it may be a little more difficult than you think. While I would say that you should treat a child on the spectrum the same as anyone else, there are a few things you may want to consider before grabbing just any toy off the shelf.

Most parents know their children well enough that they know what to buy them for Christmas, but if you’re like me and Jen then you’re a little more confused when it comes to your child with autism. Kruz, our neurotypical child, has been very vocal about the things he wants…everything. However, when we ask Konner he doesn’t really say much. He has told us a couple things, but when we try to even that out with what Kruz wants it’s difficult.

This is not necessarily geared toward parents though. This may be for the grandparents, aunts, uncles, neighbors, teachers, etc. who are looking for some little gift for a child with Autism Spectrum Disorder (ASD) this holiday season. Many of these are just common sense for any child, but some you may not think about for children on the spectrum.

The first thing I would say is don’t buy anything with little parts. Small objects are hazards, but they may also be an issue for a child on the spectrum. Those small items can get lost easily and if they do there could be a meltdown in the works. The toy is probably useless from that point on because they will be upset about that missing part forever. Konner has had many full-blown meltdowns because he couldn’t find a toy or part, or something has broken. I can’t tell you the amount of toys I’ve either hid or thrown away just because something was missing.

Noisemakers are something I would avoid. I know you’re thinking that it is just the parent in me not wanting to listen to a toy play a song over and over, or a loud whistle or instrument. While that is partially true, the other aspect is that many children on the spectrum are sensitive to sound. These loud noises can cause irritation and are potentially more harm than good. As fun as it is to torture the parents it’s not that fun to torture the child.

Be cautious when buying messy items. If you’re looking to purchase things like finger paints, slime, or even Play Dough you might think twice. Again, while it’s partially because the parent usually ends up cleaning up the mess, you may have some children who are sensitive to touch. This is a tricky one because you want to encourage creativity with art, but if the child doesn’t like the feel of wet, slimy stuff then it could do more harm than good in the long run.

You don’t necessarily need to look at things age appropriate because children on the spectrum develop differently. Some may develop slower and some may be more advanced for their age. If you’re not sure just ask the parents.

I would also make sure that the child isn’t over sensitive or under sensitive to certain material. Some children like soft, fluffy stuffed animals, and some are repulsed by the feeling. Some children like rough, scratchy material like sandpaper, but for others this may make their skin crawl.

So what should you buy then? Think about calming items. Again, if they like soft things or rough things try to find out. Many kids with ASD like pressure, so you might look for heavier objects like body pillows, weighted lap pillows, and large stuffed animals. Visual stimulation is good as well. Projection lamps, things with motion, oil filled tubes such as the ocean wave simulators, and fish tank simulators are great ideas, especially for the younger children. Any kind of game that helps to build social or language skills is good as well. You may look at board games where they have to interact with other people or flashcards where they learn letters and numbers. Social story books are a great thing as well. Anything that will teach social cues and how to act around others will be beneficial for life.

The last thing I would say is just to know their special interests. If they are into trains, which many are including Konner, then buy train stuff. Legos, while including many small parts, are also versatile. There are Legos of all sizes so they are age appropriate, and they make Legos for everything. If your child is into Ninja Turtles, Thomas Trains, Star Wars, etc. there is a Lego set for you out there somewhere.

All of these are just ideas. Keep in mind that they are sensitive and that they are children. Don’t over think it. They’re going to be happy to have something for Christmas.

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