Hello again, or why I’ve been afk! Tuesday, Feb 2 2010

Alright, howdy all! Sorry its been awhile, but I have been super busy the last 3 months or so. First off, upon changing our son’s school, which was an ugly process, we became involved in our new school. The new school, Courtland Elementary, is an absolute delight. They have the oldest autism program in Spotsylvania county and really focus on inclusion. The staff and teachers are wonderful, and even the other parents volunteer and work hard to make sure the school is successful.

Also, our local autism community is growing and developing a voice! If you are in Virginia and have not heard of Commonwealth Autism Service then you should check them out. They set up Autism Action Groups all over the state, and we have been developing one for the Fredericksburg Area. It is called the Fredericksburg Region Autism Action Group, or FRAAG for short. We are developing a resource list that I will share on here as soon as we have it hosted.

That leads to my next announcement. Due to my involvement with FRAAG, I was asked to attend an Autism Society of Northern Virginia meeting. I am now on the board of ASNV! They are a great organization and have expanded the service area to include Stafford and Fredericksburg. Hopefully Spotsylvania will follow soon. We are in the process of adding it, but bylaws changes take a while.

We have also had several play groups and think tanks. Our local play group/think tank core is 24 families. All in all 2009 was a good year for me, and I hope for even more in 2010. If you want to get on my email list then send me a message. I love to get people in the loop and aware of what is there for their families.

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Little tips that work for us Tuesday, Feb 2 2010

I know its been a while, but I finally have a few minutes to throw some knowledge down. I’ll post an update of what I’ve been up to shortly, but I have a few things on my mind I want to share while they are fresh. Number format so I don’t lose track.

1. Break it into pieces. If the pieces are too big, break the pieces into smaller pieces until you can manage them.

What I mean is that autism is overwhelming. There is so much to learn, so much to do, that you have to make it manageable somehow. My wife and I divide things, and set tasks. When she researches something, I take her word on it, and vice versa. That leads to my second point.

2. If your partner is on board, trust them.

When I say partner, I mean partner in autism. I know a lot of folks are in this alone, and my heart goes out to you. This is hard with two people. I can’t imagine doing it alone. Still, if it is you and your spouse, your dad, your mom, your aunt, or whoever, trust them. Our instinct as parents is to be protective, but at some point we have to let someone else in. When I finally started trusting my wife’s opinion and statements, we became more than the sum of our parts. I hope you have someone you can allow that to happen with. (Great sentence, ey?)

3. Write, call and email your elected officials

If you can find time, get our kids on the radar. Make a big deal. Hand write a letter, or have your child who is affected write a letter or draw a picture. If you put these people on the spot and make them see our kids then they will either respond or be shown as an uncaring cretin. Remember who we are working to help!

4. Schedule one on one time with your child

I am a busy guy, and I think I can do it all. My problem is I like to work, and I love to help. Unfortunately, that means I often overschedule myself. In order to help maintain my priorities, I now schedule time with my son. I know he would want me to help other kids like him, but not at the expense of his time with daddy. What helps our kids the most, and invests them in our world the most is our presence, our care, our love. Take time to express it.

That’s it for now. Keep up the great work!

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The Individual Education Plan or IEP Part 3: The IEP meeting Friday, Nov 20 2009

Alright, you have done your prep work, research, and you are ready to sit down with your child’s IEP team and find the supports that will make your child successful. I’m going to start this with a list of “Dos” and “Don’ts.” If some of them seem like common sense then you are ahead of the game.

DO:

Dress Nicely
Remain Calm
Bring materials with you
Have your materials organized
Have outside OTs, PTs, SLPs and other experts attend the meeting
(If a couple) Sit on opposite sides of the table
(If single) Sit at the head of the table
Have a notepad handy and take notes

DON’T:

Dress like you are going to the gym afterward
Attack everything they team members say
Bring cookies, muffins or other snacks
Agree when told that your child doesn’t listen, sit still, etc.

First off, if you dress nicely they will take you more seriously. It seems elementary, but I have seen folks show up on clothes that looked like they had never been washed. I’m also going to give you a mantra to help you stay calm. “Whoever loses his/her temper loses the battle.” Its okay to be strong and firm, but yelling and screaming will derail all the positive work you have done in a second. If you have materials, bring them and make sure they are organized. Bring your child’s other therapists if they will attend. They can help you make a good case for your child receiving more services. You need to be able to see everyone’s faces to gauge reactions, thoughts, etc. As a couple you can do this most effectively by sitting on opposite sides of the table, and if single sit on the end.

You can’t attack everything people say and expect them to take you seriously, or even want to work with you. That’s the key to the IEP team. You have to get everyone on your child’s side. I’m not saying be a milquetoast, but respect everyone’s right to their opinion. You can change their minds later with the right tools. I’m going to capitalize and restate this one for you: DO NOT BRING COOKIES, MUFFINS OR OTHER SNACKS TO YOUR IEP MEETING! Some administrators may view it as a bribe, others may refuse on principle, but the main reason not to do it is because the IEP meeting is a business meeting, not a social event. The last one is a bit of a paradox, since I’ve told you not to attack everything they say. However, allowing people to have their say and agreeing with them are two different things. You can listen to them respectfully and still not nod your head or say “Yes I have seen that.”

The key, in my opinion, is to start the meeting positively. We are very friendly with our child’s IEP team. Typically it will start with a review of information, and this is a good time to present your child’s PLOP. Make sure it is entered in the IEP. This puts a positive view of your child right up front. Other people on the team will also add their observations at this point. This is a good thing. It starts the process that I like to call “puking.”

Working with our kids is hard. As parents, we know that. Just because it is hard, however, doesn’t mean it is impossible. However, in the beginning of the meeting I want you to listen. Be an active listener. Ask questions, make notes of rebuttals or ideas and show genuine interest. The puking can go on for over an hour, due to some weird group speak phenomenon I have witnessed. When the puking finally peters out, then and only then can you go to work. It may take a while. We have had IEP meetings lasting 3-4 hours. Don’t worry. Take all the time you need to make sure they are done puking all over the conference table, then you can start working on changing their attitude.

As an advocate, you have to be the catalyst. Since the people reading this probably don’t have a law degree, we have to figure out how to be catalysts in a positive way that makes people want to help us. The first part of that is listening. The second part is responding. Its tough to get through the puking without getting mad, but remember whoever loses his temper loses the battle. Remain calm, and make notes about how you will address these issues.

Your time to shine is when the team starts going through the modifications and supports. This is where you start asking for things, and when a team member objects using their “puke,” you simply use your notes to refute their argument. For example, one IEP meeting we attended, the consensus was that our son didn’t listen. We know that, as he has an auditory processing deficit. However, we had to let them puke that out for a good half hour. Once they were done my wife said “He has auditory processing deficits. He may not understand what you are asking him to do.” Then it was like a light bulb came on.

The real misconception with autism and autism spectrum disorders is that these kids are behavior problems. In fact, most kids on the spectrum have sensory issues and their “behavior problems” are due to overloaded sensoriums that lead to them acting out. This is the key point we need our IEP teams to understand and support. When they are puking, listen to the complaints. Are they complaining about behavior? If so, you should always put that back on them. “What was happening when he had this behavior?” “Who was in the room?” “What was the class doing?” The hope is that you can find what triggers and overloads your child’s senses and give him support then, because that’s when he needs it.

Okay, this one is long enough. Next up: What to do if things don’t work out at the table.

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The Individual Education Plan or IEP Part 2: What services should I request? Thursday, Nov 12 2009

Okay, so you have your IEP meeting scheduled and the team is preparing to assemble. Now its time to get ready. Most school districts are not going to volunteer any services, so you need to be clear about what you need going in. If possible, include your spouse or partner, and talk about what supports your child will need.

Prior to the meeting you need to write a Present Level of Performance, or PLOP. This is your chance to say something good about your child. I was lucky enough to attend a wonderful class on writing a PLOP at our local Parent Resource Center. I learned a number of strategies for presenting my son’s challenges in a positive way. The real key, I have found, is to search for causes. For example, my son is very active. However, his activity level has 2 causes. One positive, his natural curiosity, and one negative, his sensory overload. So, in his PLOP, I characterize him as being curious but suggest support for his sensory overload. You can download my son’s PLOP if you need an example.

First you must establish goals. Typically goals will require some sort of baseline report showing a deficit. Most schools will offer to do an assessment. We have always shied away from this, as we feel that school personnel training is primarily geared toward educational deficits. Add to that the fact that they are not doctors, or at least not medical doctors and you can figure out why we have always tried to have evaluations and assessments done outside of the school system. Sometimes it has cost us extra money, as our insurance doesn’t cover everything. However, having documentation to back up your claims is often necessary to get the school system to do what is necessary for your child. The goals will be established at the table by the team. I mention it here because you will need to have any evaluations and assessments you want to share available for the IEP.

Goals will typically be centered around speech and language deficits, inabilities to function in the classroom or other issues specific to your child. Our IEP has 20 goals, and they range from simple language based goals to complex social goals. Try to have an idea going in of what goals you have for your child. Do you want him to speak appropriately at his current age? Do you want him to sit still in class for 30 minute increments without assistance? Do you want him to engage his peers in a typical fashion several times throughout the day? Goals are where you put that stuff into writing.

Let’s talk about supports. Asking for support is a very appropriate way to quantify your child’s needs. For example, saying “my son has autism” doesn’t mean anything to an IEP team. However, saying “My son needs support with his academics because he has difficulty understanding the teacher” gives the team a direction to go. I would actually recommend being even more specific. For example, our son has sensory needs, and when we asked for support we were very specific. His IEP reads “sensory breaks every 30-45 minutes.” The more specific you are the easier it will be to implement your child’s IEP, or, worst case, determine if it has not been implemented.

Common supports are:

Speech therapy
Occupational Therapy
Physical Therapy
Applied Behavioral Therapy
Assistive Technology

I have always felt that a kid with a speech delay needs speech therapy 5 days a week. We have 3 days of speech at the school and we had, until recently, 2 days of speech outside the school. Our son has sensory issues, so we do 1 day of OT in school and 2 outside of school. However, we also have OT consult time built in to his IEP so the OT can help make his environment more sensory friendly. We don’t do PT or ABA but know other families who do.

Assistive technology is tougher to get. Some kids who have severe language delays can qualify for an alphasmart, or other text based communication devices. Our son uses an FM device to help with his auditory processing delay. This is simply a pair of noise cancelling headphones plugged into a small receiver. His teacher wears the microphone, and it helps him isolate her voice from the rest of the background noise.

These are just some of the options available. Get out there and talk to other parents. Network and find out what is working for other kids, then incorporate what you think will work into your action plan. Next up: Sitting down at the table for the IEP.

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Take a minute today and vote. Tuesday, Nov 3 2009

Look, I don’t like to get on my soapbox (despite all evidence to the contrary!) but if you have a child with a disability you need to be heard. We with kids on the spectrum are reaping the benefits of those who came before us, paved the way and in many cases are still fighting for the rights of our kids. Help them by finding out about your local, state and national politicians and voting.

If you can help on a campaign or lobby for our kids, that is great. You can write letter too. Every little bit helps, because our kids will be forgotten if we don’t constantly remind those in power that they have rights too. However, our rights start with the vote. It is both our privilege and responsibility to vote, so do it!

At any rate, I’m not trying to get preachy. I just want to tell everyone that if we don’t put the right people in office to advocate for our kids they will be left out. Don’t let our kids get left behind. Vote.

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The Individual Education Plan or IEP part 1: The basics Monday, Nov 2 2009

Okay, let’s start with the basic elements of the Individual Education Plan or IEP. I’ll go over who needs one, why they need one, the legalities involved and some alternatives that are allowable by law but maybe not the best for your kid.

An IEP is a plan for your child’s education that will allow you and the school to make accomodations for your child’s special needs. The official legal definition is somewhat longer, but that is sufficient for what we are doing here. IEPs are governed by the Individuals with Disabilities Education Act, or IDEA 2004. 2004 is the most recent update to the act. You can search the act in full at the Wrightslaw law center. Also, if you are looking for a good legal guide of your rights and responsibilities, wrightslaw is the best advocacy resource out there for parents.

A quick note here: If your child is in a child find/early intervention program you will not have an IEP. You will have an IFSP, or Individual Family Services Plan. When you transition to your local school that will change to an IEP.

IEPs are put together by a team, which typically consists of the parents, the child’s teacher, a school system representative, the principal of the school, the child’s case manager and any specialists that may be involved in the child’s care. For example, our IEP meetings also have an autism specialist who works for the county, an occupational therapist and a speech therapist. Those services are critical to our sons education and as such we need their input when we plan his IEP.

IEP terms last a year, and by law must be renewed prior to then.The reason this is important is that the IEP is actually a contract, enforceable and actionable by law. As such, many schools are loathe to volunteer services because they know they have to provide them. This is where we as parents need to be experts. It helps if you can speak with other parents, do some research on the internet and consult with any specialists you see prior to attending an IEP meeting.

However, if you draft an IEP and are unhappy with it, as a member of the team you have the right to call another IEP meeting at any time. At the end of every meeting everyone on the team must sign off on the IEP. Again, if you are unhappy, you do not have to sign. You can also write “signed under protest” above your signature in order to show that you are not satisfied with the school’s solutions or supports for your child.

The key thing to take away from this article is that you are the expert on your child. Administrators and teachers always present themselves as experts on children, but nobody knows more about a child than his parents. Remember that and you will do just fine.

Next up: What will the school offer me?

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4 month break, and now I’m back! Thursday, Oct 29 2009

Okay, just a quick explanation and then rededication. Summertime got away from us, and my last post was actually the first day of summer! Between summer school, then school starting and challenges with placement, time just got away from me. To my loyal readers, I am sorry. However, I’m back and plan to get back after it. I’m going to start with a series on IEP planning and implementation, as that is what I’m currently immersed in and thinking about.

Let’s catch up a little though. Raymond is doing well. He just turned 6, and is in a mainstream kindergarten class with a fading one on one paraprofessional. Although school started a little rocky he is in the right place now and is thriving. We have been told that academically he is on a late 1st grade/early 2nd grade level, so we are happy about that. We are proudest of his social moments though. He is really trying to be social, and is starting to gain the skills he needs to interact.

We have begun working toward self advocacy and independence. Part of our long term goal with Raymond, and part of his “recovery” (more on that in another blog post) is that he be able to speak for himself and meet his own needs. That is absolutely critical in order to make sure he does not get overlooked, used, or the like. To that end we have tried some different things in OT, like Stick Kids (which I’ll blog about, I promise) and other visual therapy aids.

Other changes: His therapeutic riding instructor, Racel, told me today that Raymond rides like a typical 8 and a half year old kid. What she meant by that is that he can stop, start and guide the horse independently using reins, verbal commands and kicks. I wasn’t sure how to react, but I did comment that we feel he is really starting to take off in some areas, and she agreed. We replaced Raymond’s OT and he loves his new therapist . She can get him to really go outside of his comfort zone, which is resulting in some big gains in both regulation and balance. Finally we start with a new speech therapist next week. He switched around to a couple different therapists, and we felt that he just wasn’t clicking with them. Hopefully this is the next step in that therapy and we can start seeing more gains in pragmatic language.

One other thing: We started using MB12 lollipops over the summer and they have really made a huge difference in both regulation and attention span. They are called revitapops and you can buy them online at www.revitapop.com . I highly recommend trying them if your child has an issue either methylating or converting b12 into methyl b12, which is part of the methylation process. They really are awesome, organic and contain no dyes, chemicals or the like. I think they are approved for the feingold diet stage 2, but I’m not 100% on that so check it first. Its late and I’m tired. Anyway, thanks for reading and keep your eye out for more blog posts!

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Remembering things I already know, or living mindfully. Monday, Jun 22 2009

I don’t have a medical reason for being easily distractable or naturally curious. I just am, and have always been interested in my surroundings. However, because I tend to forget things easily, I am also in a constant state of re-realization when I remember things that are relevant. For example, I know that if I get a full 7-8 hours of sleep I will function and feel better the next day. However, as I run out of time during the day, I often push back my bedtime in favor of some insipid TV show or quality computer goof-off time. This normally reaches a head when I get about 3 hours sleep one night, then I remember how much sleep I need and get to bed on time for a week or two. However, pretty soon I forget and the cycle starts again.

This happens a lot with Raymond too. He is a 5 year old, so that is trying enough for most parents, but he also has autism which adds a whole extra dimension to his behavior. However, on some days when he just won’t listen, I have to rein in my temper and take several deep breaths. Then I remind myself “He has difficulty with auditory processing, so he may not hear you since there is competing background noise.” This helps me reorient, and if we are home I turn off all competing noise sources and have a talk with him. If we are in public, I take him aside to somewhere quieter and try to talk to him. Then I realize all over again how important it is that I raise my son mindfully.

Mindfully. What an odd word, but one I find more appropriate as I get older. I think the reason I get so frustrated with a number of people is that they are not mindful of their actions. I am guilty of it too. I think it is human nature to take things for granted, assume that things are going well because they are supposed to go well and forget all the work we do to keep things headed in the right direction! I know that I do a better job for my clients when I keep this thought at the top of my thought list: “Their wishes are tantamount. Mine are irrelevant.” This helps me refocus and do the absolute best job for my people. The same is true for Raymond’s therapy. When I get my head totally into it, he responds better and we make more progress. When I have other things on my mind, he can sense it and is less responsive, less interested.

So if you can take one thing from this, try living mindfully. To quote Nicholas Malebranche, “Attentiveness is the natural prayer of the soul.” Say a prayer today by paying attention. I promise your rewards will be greater than your effort.

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Biomedical and Supplements: Part 1 Sunday, Jun 7 2009

Okay, this is the first in a series of many articles on biomedical interventions. We credit a great deal of our success with Raymond’s increased functioning to our biomedical work. I had this grand idea that I would type up outlines and have some sort of cohesive master plan, but that is just not happening. Instead, I’m going to do most of this from memory.

The first thing we tried, and this was way before autism, was Transfer Factor. It is a 4Life product, and 4Life is a multilevel marketing company. Honestly, if I didn’t love the product so much I would never put up with the rah rah from the company as that sort of thing annoys me. At any rate, transfer factor is immune intelligence contained in a certain type of white blood cell. This immune intelligence is harvested from eggs and cow colostrum, so this is NOT a vegan product!  However, it works well for us, as when Raymond takes it he stays healthy and if he goes off of it he gets sick.

I found it interesting that in Dr. Bock’s book, Healing the New Childhood Epidemics, that he only found TF effective in about half of his patients.  I use it myself and it helps keep my allergies in check.  We use it in a liquid form as 4Life makes an antioxidant juice drink called Rio Vida which is much tastier than swallowing capsules.  It ain’t cheap, but its totally worth it for us.

The second thing we tried that really gave us a good burst of language was a probiotic.  For those who don’t know, probiotics are supplements of good bacteria that will help your intestine digest food and function more effectively.  You can get plant based, animal based or human based probiotics.  If you use plant or animal based probiotics you will need to swap them out every 2-3 months.  However, if you use an HMF, or Human Micro Flora, probiotic there is no need to switch them up.

Our first major experience with probiotics came a couple years back when Raymond became ill with a major rotavirus.  He was so sick he ended up in the hospital on an IV.  Naturally they slammed him with antibiotics, so our pediatrician had us take his probiotic intake from 1/4 tsp a day to a full tsp a day so we could reseed his gut with good bacteria.  (Antibiotics kill off gut bacteria FYI)  As soon as we did that we noticed increases in eye contact and language.  That’s when we knew he needed it.

The third thing we do religiously is cod liver oil.  We do 2 tsp per day, 1 tsp in the morning and one in the evening.  It really helps Raymond think and focus.  I notice on the days we miss it we have behavior issues and more temper tantrums.  Not that those are absent when he takes it, but it is better when he has it.

That’s all I’m going to do for now, as wordpress and firefox are fighting and I need to figure out why!

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Are there really people like this? Thursday, Apr 30 2009

Bullying: Its not just for school kids anymore.

I am pretty appalled at an article I read this morning. You can read it for yourself at 10news.com, but I’ll paraphrase it here.  A family in San Diego had a son diagnosed with autism at 18 months.  At a later date, the child was being bullied by another neighborhood child.  The father, an airline pilot and retired Marine, tried to talk to the other child’s parents about it.  In response, that neighbor and two others filed restraining orders against the child and his parents.

How galling!  I mean, kids will be kids.  There are bullies, and those kids need to be taught better behavior.  However, when the parents will file a lawsuit rather than admit any sort of wrongdoing on their child’s part it seems pretty obvious where the child has learned how to treat people.  What kind of message are they sending to their kids, and how is that message teaching the kids to be better people?  If I ever say something to my son like “Well buddy, sometimes its better not to talk things out and file a lawsuit to get your way” I hope he has the good sense to ignore me!

The hard part is to find the good in people when you read about something like this.  I mean, the neighbors were making crazy accusations like the 4 year old “might come out with a firearm at anytime.”  Really?  I mean, my son is 5 and couldn’t load my pistol, which I keep locked up and unloaded.  Oddly enough, the father owns one gun as well, which is also locked up.  A former Marine is familiar with gun safety!  I wonder where he learned that?

I guess the silver lining is that it was thrown out of court, and the judge ordered the neighbors to reimburse the family for their legal bills.  There are good people, and some of them are in positions of trust and doing damn good jobs.  I encourage everyone to read the article and make their own decision, but I really feel like this is an instance where the our justice system did things right.

Please folks, think about your actions with these kids.  In my experience, there is no situation that cannot be resolved amicably when approached with calmness, honesty and an open mind.  If we are all tolerant of each other then everyone wins.  Thanks for reading.

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