The Individual Education Plan or IEP Part 4: 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.

Leave a Response »

 

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.

Leave a Response »

 

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.

Leave a Response »

 

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?

Leave a Response »

 

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.

Leave a Response »

 

Rock for Autism, or how I get motivated. Wednesday, Apr 8 2009

So I started thinking that different people are moved by different things. First off, my main motivation is to help my son, but sometimes I need “a little help from my friends.” My friends are songs that inspire me. Naturally my son is now a fan of some of these songs, so I’ll share a few with you.

Radio, Radio – Elvis Costello and the Attractions

I’m not a huge Elvis Costello fan, but this song really pushes me. It has a great beat and a good message. I find it telling that Raymond’s favorite line is “And the radio is in the hands of such a lot of fools trying to anesthetize the way that you feel.” He has trouble singing it, but he really loves it anyway!

Handlebars – Flobots

Okay, this is a newer addition, and I think Raymond only likes it because he is really into riding his bike right now, but it still helps get me going. A simple college alt-rock/rap anthem about power and ego. Good stuff.

One Toke Over The Line – Brewer & Shipley

I put this on a mix cd thinking Raymond might enjoy the vocal interplay and upbeat tempo. He didn’t cotton to it at first, but now he loves it. It really helps me smile and push on when things are tough.

Gnarls Barkley – Going On

Raymond likes a few Gnarls Barkley songs, but this is the one that really gets my blood pumping. “Connect the cause and effect, one foot in front of the next, this is the start of a journey.” Gets me every time.

Must Of Got Lost – J. Geils Band

Not sure why he loves this one so much, but he sure gets into it. I like it because it has a great vocal line and a driving beat. Perfect for in car listening, but I have to fast forward through Peter Wolf’s intro in the live version due to adult language.

Say Hey – Michael Franti & Spearhead

I can’t think of another song that gets me dancing in my seat like this one. Wonderful song, and you get to sing “I love you” a lot in it.

I’ll include one last song, but I will be coming back to this topic in the future. My wife has one song in particular that she dedicates to Raymond every time she hears it, and I think its pretty apropos so the lyrics are below. They’re worth a read.

When I Paint My Masterpiece – Bob Dylan

Oh, the streets of Rome are filled with rubble,
Ancient footprints are everywhere.
You can almost think that you’re seein’ double
On a cold, dark night on the Spanish Stairs.
Got to hurry on back to my hotel room,
Where I’ve got me a date with Botticelli’s niece.
She promised that she’d be right there with me
When I paint my masterpiece.

Oh, the hours I’ve spent inside the Coliseum,
Dodging lions and wastin’ time.
Oh, those mighty kings of the jungle, I could hardly stand to see ‘em,
Yes, it sure has been a long, hard climb.
Train wheels runnin’ through the back of my memory,
When I ran on the hilltop following a pack of wild geese.
Someday, everything is gonna be smooth like a rhapsody
When I paint my masterpiece.

Sailin’ ’round the world in a dirty gondola.
Oh, to be back in the land of Coca-Cola!

I left Rome and landed in Brussels,
On a plane ride so bumpy that I almost cried.
Clergymen in uniform and young girls pullin’ muscles,
Everyone was there to greet me when I stepped inside.
Newspapermen eating candy
Had to be held down by big police.
Someday, everything is gonna be diff’rent
When I paint my masterpiece.

Someday, everything is gonna be diff’rent…

One Response »

 

World Autism Awareness Day Thursday, Apr 2 2009

Or World Autism Day, depending on who you ask. Today is a pretty good day to talk about all things related to autism, but the key is getting people to understand. I am committed to posting at least once a day on my blog during the month of April, which is National Autism Awareness Month, just to help educate and inform. So I think I’ll start today with the basics.

Autism Awareness Ribbon

What is autism? Well, according to the Diagnostic and Statistical Manual Volum IV (DSM-IV), you have autism if:

A. A total of six (or more) items from (1), (2), and (3), with at
least two from (1), and one each from (2) and (3)

(1) qualitative impairment in social interaction, as manifested by
at least two of the following:

a) marked impairments in the use of multiple nonverbal behaviors
such as eye-to-eye gaze, facial expression, body posture, and
gestures to regulate social interaction

b) failure to develop peer relationships appropriate to
developmental level

c) a lack of spontaneous seeking to share enjoyment, interests, or
achievements with other people, (e.g., by a lack of showing,
bringing, or pointing out objects of interest to other people)

d) lack of social or emotional reciprocity ( note: in the
description, it gives the following as examples: not actively
participating in simple social play or games, preferring solitary
activities, or involving others in activities only as tools or
“mechanical” aids )

(2) qualitative impairments in communication as manifested by at
least one of the following:

a) delay in, or total lack of, the development of spoken language
(not accompanied by an attempt to compensate through alternative
modes of communication such as gesture or mime)

b) in individuals with adequate speech, marked impairment in the
ability to initiate or sustain a conversation with others

c) stereotyped and repetitive use of language or idiosyncratic
language

d) lack of varied, spontaneous make-believe play or social
imitative play appropriate to developmental level

(3) restricted repetitive and stereotyped patterns of behavior,
interests and activities, as manifested by at least two of the
following:

a) encompassing preoccupation with one or more stereotyped and
restricted patterns of interest that is abnormal either in
intensity or focus

b) apparently inflexible adherence to specific, nonfunctional
routines or rituals

c) stereotyped and repetitive motor mannerisms (e.g hand or finger
flapping or twisting, or complex whole-body movements)

d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following
areas, with onset prior to age 3 years:

(1) social interaction

(2) language as used in social communication

(3) symbolic or imaginative play

C. The disturbance is not better accounted for by Rett’s Disorder
or Childhood Disintegrative Disorder

I understand that doesn’t really give you a definition, but may help you understand that autism is not a cut and dried diagnosis, like a sinus infection or even diabetes. The Autism Society of America defines autism as “a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.“

Awareness can help. Many people I have spoken with don’t really understand why awareness helps families with autism. Let me give you some examples from my life where awareness would have made life easier. First off, my son Raymond has High Functioning Autism. Much of the time he presents like a typical kid. However, when you begin to engage him you start to see his issues. One of his issues is auditory processing. He has acute hearing but has difficulty processing and making sense of sounds. Imagine how difficult simple things like shopping and riding in a car could be! Well, when I am in public and Raymond starts to melt down, I am typically very calm. I attempt to redirect him, offer him fidgets or whatever toys I have stuffed in my jacket pocket, but I keep on shopping or doing what I’m doing.
I can tell this frustrates some people. I get the looks. You know, the “why can’t you control your kid” looks that parents get from non-parents. I ignore them now, but when we were first discovering these things I actually had people come up to me and ask “what are you doing to that child.” Naturally I had some choice words for them, but on reflection I wish I could address them again and say the following:

“My son has autism, a severe developmental disorder. He has difficulty remaining calm in crowded or busy surroundings. Unfortunately, I still have to buy groceries and clothing or my family will walk around naked and starving. If this inconveniences you, I’m sorry, but understand it is only an inconvenience to you. It is much more than that to me. In the future, please try to be considerate of parents who are trying to handle their children. They might be going through something you cannot understand. Thank you.”

So awareness helps. Be kind, and understand that people who are not typical have the same rights to public places that you do. If you are not a tolerant person, give it a try. I promise you will get more than you give.

Leave a Response »

 

Diagnosis: Our first visit to Georgetown Tuesday, Mar 10 2009

Our first visit to The Georgetown University Hospital’s Autism and Communication Disorders Clinic did not happen overnight, so I’ll start at the point when we began looking for a place to take Raymond for a diagnosis. Shortly after Raymond’s third birthday, my wife and I were 99% certain that Raymond had autism. We were so certain that we sat down with our pediatrician and asked her where we should take Raymond. She suggested several places, like Kluge at Charlottesville, MCV in Richmond and Georgetown. My wife put it best when she asked our pediatrician “If you had a child, where would you take him?” Our pediatrician answered without hesitation “Georgetown. I’ll write you a referral.”

However, like all good things, we had to wait. We found out they wouldn’t have any openings until the spring, so decided to try a different route. In February we went to see Dr. Mary Megson in Richmond, a DAN! doctor and wonderful woman, who I will be writing about in greater detail in a later blog post. She gave us a diagnosis of infantile autism. We were relieved! Now we could get our insurance company to pay for needed services, like speech and OT. Unfortunately that was not the case.

So, we called Georgetown again. They were booking appointments then, so we got 2 appointments in late May and one in early June. Let me explain why it takes 3 appointments so folks don’t think they are trying to get extra copayments out of their patients. The fact is that the Autism and Communication Disorders Clinic uses a multidisciplinary approach, so Raymond would go through 4 seperate evaluations. The team consists of:

Dr. Stephen Mott, developmental cognitive neurologist and chief of the division of child neurology
Dr. Diane Jacobstein, clinical psychologist with decades of experience
Rita Solórzano, speech language pathologist
M. Janet Thomas, occupational therapist.

During the first two appointments, the team evaluated Raymond. First up was Doctor Mott, who did a wonderful job asking questions and discovering more about the physical side of Raymond’s disorder. Next up was Rita, who managed to elicit some response although by that time of the day Raymond was not in the mood to sit still. Our second appointment started with Dr. Jacobstein, who did a wonderful job engaging Raymond. We finished with Janet, who did the best she could evaluating Raymond in spite of the fact that he was not cooperative.

Let me backtrack for a minute. When we first met the team, we laid it out pretty clearly that we thought our son had autism. My wife said “Don’t send us home with a diagnosis of PDD-NOS, because that doesn’t help us.” We knew this from fighting with our insurance company. PDD-NOS, or Pervasive Developmental Disorder, Not Otherwise Specified, had the potential to be denied by our insurance company. Our insurer, Guardian, who will be prominently featured in a later post, specifically excluded any sort of therapy for a developmental delay or disorder.

So, the third visit to Georgetown was for our diagnosis and recommendations. We were all seated in a conference room, and we were given our report. It was pretty large and indepth, clocking in at 23 pages. Although we knew in our hearts that Raymond had autism, that didn’t make it much easier hearing it said and seeing it in print. However, the team was very tactful and sensitive in the delivery of the news, which did help a great deal. All told, Raymond was diagnosed with 5 challenges. Autism, Dyspraxia, Hypotonia, Hyperlexia and Transient Alterations of Awareness.

The Autism diagnosis is familiar to most folks, but I do want to mention one thing. Raymond was diagnosed with autism despite the fact that he did not have many of the behaviors commonly associated with autism. However, Dr. Mott was very clear and specific when delivering the diagnosis. Per the DSM-IV, atypical autism is still diagnosed as autism, not PDD-NOS. PDD-NOS is specifically reserved for children who did not meet the criteria for autism, not kids who were atypical but still met the criteria. Dyspraxia, sometimes labeled Apraxia, is a motor planning and sequencing disorder. That was really the silver bullet we needed for our insurance company to start paying for OT. Hypotonia is low muscle tone, and is common in special needs world. Hyperlexia could be either a boon or a curse, as it means that Raymond could read before age 3. If he could decode the words and understand them, it was a boon. If not, it could be indicative of other issues. Finally, transient alterations of awareness related to Raymond’s tendency to stare off into space. There was a real concern that Raymond might be having “absentee seizures.” I’m pretty sure they aren’t called that any more, but I can’t quite remember what they are called. At any rate, that meant we had to do a 24 hour EGG with Raymond to see if he was seizing. I’ll go into details about that later.

The best was yet to come. The 23 page report contained a thorough evaluation of Raymond, but it also contained 6 and a half pages of recommendations! We were really blown away by the thoroughness of the teams’ suggestions. I’ve excerpted some of them below.

7. Raymond should continue with speech and language and expressive skills and pragmatic language skills and his oral communication intervention to maximize motor issues need further exploration and appropriate intelligibility his speech intelligibility.

8. Raymond will benefit from having a strong home component as part of his therapeutic approach. The links between the classroom, therapy sessions and his parents at home is critical for carryover of skills from one environment to another.

9. Model two and three word phrases for Raymond to help him understand how to combine words into novel combinations. At present,he is using single words and rote sentences or phrases but does not appear to be using phrasesthat he has constructed himself. Use combinationssuch as: object-action (monkeywalk), action-object(Fly plane), object preposition(ball in), object-function word (cookie,yes), action-pragmatic marker(open please), etc. Also, listen to two word combination that he produces and add an element such as descriptive concept (fly big plane) or noun (ball in bag).

That is just 3 of 20 recommendations we received, and all of them were of that caliber. We credit major parts of our action plan with Raymond to the help we received from Georgetown. Not just that, the report gave us the justification to begin speech therapy, physical therapy and occupational therapy, all of which have helped Raymond grow and thrive. In fact, he met his PT goals after just 14 weeks, and has since been released.

I guess what really struck me about the team at Georgetown is their willingness to help our son. We have seen many therapists and doctors, but the ones who exemplify their profession best are those who go the extra mile for their patients. I’m happy to say that the staff at the GUH Autism and Communication Disorders clinic are among the best professionals I’ve met in my life. If you have a kid on the autism spectrum, these are the people that will help you help your child.

Leave a Response »

 

How it all started 4: What dreams may come Tuesday, Jan 20 2009

Eleanor Roosevelt wrote “The future belongs to those who believe in the beauty of their dreams.”  I think she is right, because most folks don’t pursue dreams that they find hideous or malevolent.  This is one of the harder parts of our little journey, and it got really dark before the light started coming back again. 

In the middle of our darkness, two large family events occurred.  One was meeting my daughter, who I will not discuss here as I have not talked with her about this or gotten her permission.  Short form is this: I met my 16 year old daughter for the first time when Raymond was 2, so right in the middle of this we had those family issues to deal with. It was tough, and we handled some things well and some things poorly, and that’s where I’m going to leave that for the purposes of this blog.

The second major hit was my wife was diagnosed with panic disorder.  I’m not going to delve too deeply into that either, because I haven’t really talked to her about publishing this, but we had to really restructure our lives and change many of our methods to help relieve stress on her and create a haven in our home.  Without getting too specific, we had to learn how to come together in a crisis instead of attacking each other.  I can state for an absolute fact that if we hadn’t learned how to do this, we would be divorced today.

I mention this last part because my wife’s panic disorder ironically ended up helping us in a major way.  It introduced her to her therapist, who is now our therapist.  I highly recommend therapy for those of you that can afford it and are going through this.  Not necessarily for the “magical psychology fix” that people seem to expect from therapists.  Mainly because it is helpful to have a third party hear what you are going through and reinforce that it is terrible, it is difficult, and you are doing the right thing.  Also, having a referee to help sort out tougher issues is really a good way to get some positive dialogue on an emotional subject.  We have been seeing him for over 2 years now, and it has really helped us keep the lines of communication open.

I finally started to wake up from my funk about October 2006.  We first heard the word autism in February 2006, and I had been researching furiously since then.  We had managed to implement some changes for Raymond in spite of my denial, and a big part of that came from another accidental discovery.  Raymond came down with a nasty rotavirus in late spring of 2006, and ended up in the hospital due to starvation and dehydration.  He literally could not eat or drink without throwing up.  Once we got out of the hospital, our pediatrician told us to double his dose of probiotic.  We did, and we got more language and more eye contact!  That’s when I started considering the possibility that biomedical intervention might help him.

I also have to credit my wife during this time.  She never gave up, and approached the subject from every different angle imaginable to help me see.  She was researching as much as me, and through that learning I finally began to figure out what was wrong with Raymond.  We got in some pretty nasty fights, and those who know me can attest to my acerbic wit.  However, by October I was ready to step out of the darkness and help move Raymond into the light.

The funny thing about it is how much better I felt after accepting things.  It took some time to understand that the end of my expectations was not the end of my family. I understand now that there is always a future, and in most cases it will have surprises, some pleasant and some unpleasant.   However, I am happier now that I accept my son’s condition as a part of his life.  Autism is a part of my son, but not his all. Some people can only see that limitation, but thanks to what I have been through I see only possibility.

Leave a Response »

 

The Feingold Diet Phase 1: The first week Monday, Jan 19 2009

Okay, since I haven’t posted much over the holidays I will try to make up for lost time this week.  First off, we started back on vision therapy with Dr. Kaplan, and visited his office in lovely Tarrytown NY last weekend. We had a great visit, and our new vision exercises are much easier than the last set.

Second, we started the Feingold diet.  For those of you who are not familiar, the Feingold diet was designed by Doctor Feingold, an allergist at San Francisco’s Kaiser Permanente Medical Center.  He began working with patients who he thought had aspirin sensitivities, and discovered that many of these patients also had allergies to various food dyes and additives.  Next, he documented changes in behavior due to the allergic reactions.

The Feingold diet eliminates ALL food dyes, food additives, artificial colors, artificial preservatives and artificial sweeteners. Additionally, it removes foods that contain salicylate, which is a substance similar to aspirin. Oddly enough, many foods contain salicylate, which came as a huge surprise to me.  Apparently salicylate is a natural pesticide that plants produce to protect themselves from insects.

Anyway, we got started a few weeks back when we described some behavior to our pediatrician.  Raymond and I had just come home one day, and Raymond promply went and sat down beside one of our friends.  Then, after a few times of his mother saying “Raymond” he looked up and said “Mommy!”  Then he quickly ran over to his mother and sat beside her.  We believed that, since our friend was sitting in his mother’s usual seat, he assumed she was his mom and didn’t do any visual “follow up.”  We have seen this sort of tuned out behavior a number of times with Raymond, and his pediatrician commented that it was typical for kids with ADD/ADHD.  That led her to begin questioning his diet more, and we settled on Feingold as it has been shown to be effective in treating ADD/ADHD.

Next step was to join the Feingold Association. The link is http://www.feingold.org and costs $82.50 to join.  Believe me, that is money well spent.  These folks investigate food more thoroughly than any other group I’ve ever encountered.  So we joined and our books arrived a few days later.  We received the general guidelines to the diet and a foodlist, as well as a restaurant guide.  The restaurant guide was pretty thin, as most restaurants use stuff that is off the diet.

The next step was to take an entire sunday and create a menu, shop, clean out the cupboards and prepare foods.  Let me tell you, that is too much for one day.  We only got a 5 day menu done, but it did help us become really familiar with what Raymond could and could not eat. We made a shopping list, and hit the store.  Then, since we don’t have any local breads that fit the bill, we spent the rest of the day baking bread and cleaning out the pantry. We gave away a huge box of food, and threw away about half that.  We were careful to keep things that are allowed on stage 2, but since the pantry had mostly processed foods that didn’t apply very often.

After that, we started the school week!  We decided to follow the diet as well, thus reducing the possibility of having something in the house that was off the list. One of the first things we noticed monday was how calm Raymond was!  According to the literature, some changes may be immediate, some may occur over several days and some may several weeks.  Apparently many of these chemicals accumulate in the body, and it takes time for the body to shed them.  At any rate, Raymond was wonderful on the first day until…

We went to our pediatrician’s office to pick up some supplements.  We set Raymond up with some magic markers to color while we talked to her.  As soon as he got some marker on his skin he became uncontrollable.  We racked our brains until we put 2 and 2 together.  The markers are full of artificial coloring!  We got Raymond home and calmed down, and then realized we had a bigger job ahead of us.

Many of these additives are also present in cleaning products, soaps and other household items.  We have a fairly toxin free home, as we have weeded out all of the paraben and sulfate products in addition to removing all chemical cleaners, candles and soaps.  However, there were still some additives in his soap, shampoo and other things that he couldn’t tolerate.  We lived with them for the week, but I’m happy to say that after a trip to Whole Foods (and a ridiculous amount of money) we finally have a clean environment for the diet.

Tuesday was rough.  It almost seemed like Raymond was going through some withdrawal.  Wednesday was better, although he was still a little off.  Thursday was wonderful.  Not only did we have school, but he also had speech and OT.  He did great in speech, but would not cooperate with his OT until she found some trains. Still, the fact that he was able to do both therapies in one day in addition to the work we did at home says a lot about his ability to concentrate and sustain activity.

Friday was a nightmare, which didn’t make sense to me.  He woke up in a good mood, and was great all the way to school. When I picked him up, his teacher and para both told me that he had a rough day, which didn’t jive with what I experienced that morning.  It bothered me so much that I called back about an hour after we got home.  Raymond was wired and on edge.  I’m sure plenty of parents have had days like that, where your kid is into everything, climbing the furniture and doing everything he knows not to do.  Well triple that and you have our friday!

My first thought was that he had a dietary challenge. So I called the school and spoke with his para, who said he definitely didn’t have any food off the list.  Then I thought about the markers, and asked about that.  Then she said that he did get some marker on his hand, but it wasn’t very much.  I knew it didn’t take much, but somehow felt there had to be more to it.  After all, Raymond had marker on his hand earlier in the week and it hadn’t been this bad.

Then the teacher called back and we went through the day step by step.  Apparently one of the kids had an accident in the bathroom, and they had to call the custodial staff.  Then, after they left, the teacher sprayed lysol all over the bathroom.  That clicked with my wife, as she had spoken with another mom who has a very sensitive child, and lysol has a number of chemicals that affect her kid.  Finally we knew!  We explained to the teacher what happened, and why he was so difficult, which was a relief.

Saturday and Sunday were okay, but we did eat out at a restaurant for the first time since starting the diet.  Let me tell you, that is tough.  One of the stage one no-nos is tomatos, which are tough to avoid in an italian restaurant!  Still we got by, and Raymond had a good weekend. We’ll see how this week goes.

Leave a Response »