Great information for parents coping with children who wander.

I do not have a child who wanders, but I know a family who contends with this issue frequently. This is by far the only comprehensive tool kit I have seen for Wandering. It is an issue that hits close to home, so I thought it was important to share the link to the tool kit.
Big Red Safety Toolkit

Developmental Pediatrician Appointment

After 5 years of waiting lists I will finally have my son properly evaluated by a developmental pediatrician! We are not going to the place I have been on a waiting list for, but still we have an appointment in September of 2014!! 
The first thing I am going to ask them do is give us a documented Autism Spectrum Disorder diagnosis. The psychologist who initially diagnosed my son did not provide any medical reports, only a 2 paragraph letter stating she diagnosed my child with ASD and a recommendation that we apply for SSI. 
I am also going to ask for the neurologist referral. I may not get the referral, but asking won't hurt. Given the family medical history I am pretty confident they will want me to explore the option.
I know I am not going to have all of my questions answered, but I am going to make sure a few are answered! Honestly my main concern is the behavioral "issues" and the educational anxiety. I am so sick of teachers telling me my child struggles with anxiety. What is causing his anxiety? His educational setting, distractions, and disruptive peers. 
I am also going to tell them since getting in contact with Unique and GARD I have found more resources and support then I could ever imagine! If they have no idea of what either organization is, they will after I see them. 
Ideally the outcome would include a treatment plan, but for now I am just relieved that my child will be evaluated. With the properly documented diagnosis and medical reports completed my family will be able to access the resources available in our community.

Summer 2014 update.

I have not been able to update because my internet access has been limited.  I contacted the Genetic and Rare Diseases (GARD) Information Center, and their response was beyond anything I could imagine!  The  phone call I received in response to my email boosted my confidence and hope. They provided contact information for a few researchers, which is more then the genetics specialist we see here in Syracuse had to offer. They also refereed me to a blood bank of sorts in which researchers will have access to. I simply provide a blood sample and whenever a researcher wants to conduct a study that pertains to our chromosome disorder they will use the blood. I had no idea such a place existed! I will elaborate more once I contact the researchers. Even if they appear to be dead ends thay may lead to other open doors or opportunities.
Aside from that my son is participating in a local parks and recreation program, and has done exceptionally well. I have not received any phone calls to pick him up. The majority of the kids are typical, and none have bullied or harassed him because of his differences. It is a huge step for him. It is nice to have part of the day to myself. I have been able to exercise and apply for jobs. I have also done a lot of cleaning and organizing.
Well I hope you all are having an enjoyable summer. I have a lot to do today, so I am going to cut this short. Just remember there is always a new door when one is closed. I keep advocating and perusing any lead I find. Eventually the hard work is going to pay off.
-Patricia

Genetic Mutations

Well I figured the easiest way to do this was to repost and excerpt from  my Unqiue Facebook group introduction. "Hello everyone. I am going to take a moment to introduce myself, and my child. The most important thing is that my child and I have a 1.10mb loss (deletion) of 12q13.13, and several other micro losses and gains in our DNA. The losses are from chromosomes 2q32.2, 6p21.1, 8p11.23, 14q11.2, 17q21.31, and Xp22.33. The gains are on chromosomes Xq11.1, and Xq28. There is unclear clinical significance for all of our DNA losses and gains (according to my genetics counselors). My child and I are the only 2 clinically diagnosed in the world with the 12q13.13 deletion (Microarray Result 48,681,290-49,784,059)."
These are the results of the Microarray and FISH analysis done 3 years ago. Still my child and I are the only 2 clinically diagnosed with the 12q13.13 deletion. If you would like more information about the sizes of the micro losses and gains just ask.

In further review it has been determined that my son is a carrier of a rare autosomal recessive iron metabolism disorder.

http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=EN&Expert=209981

Unique

Well once again insomnia is plaguing me. I went through the private Facebook group I belong to and searched every chromosome deletion and duplication we have. I found other families with the deletions, different sizes, but still. So finding other families led to more information.
Finally information about the Xq28 duplication. Funny a genetics counselor couldn't tell me ANYTHING about the chromosome, but you can google legit articles about it. These links gave me some insight on the Xq28 duplication, also known as a MECP2 Duplication syndrome.Xq28 diplications, Rarechromo.org
mecp2-duplication-syndrome
To sum it up the Xq28 duplication the Unique (rarechormo.org) pdf states "Most common features of a duplication of Xq28 in boys.
Every boy with an Xq28 duplication is unique and so each person will have different
medical and developmental concerns. Additionally, no one person will have all of the
features listed in this guide. However a number of common features of duplications of
Xq28 have emerged:

 Hypotonia (floppiness or unusually low muscle tone) in newborn babies and infants
 Delayed or absent speech and language
 Learning (intellectual) disability
 Progressive neurological conditions such as seizures and spasticity (a disorder in
which certain muscles are continuously contracted. This contraction causes
tightness and stiffness of the muscles and may interfere with gait and movement)
 Recurrent respiratory infections"
 My son has low muscle tone, delayed speech and language, and Autism and ADHD (intellectual disabilities). He also has had constipation issues, which is also linked to Xq28. Another point unqiue made is that "Children with an Xq28 duplication are typically pleasant, calm and sociable. However, they are as vulnerable to frustration as other children with a communication difficulty and temper tantrums and aggression can present carers with challenges." My son was defiantly frustrated with his communication difficulties and tantrumed until he was 7 because of the speech impairment.
Also "Behavior within the autistic spectrum has been reported both in the published medical literature and in a number of Unique children. Some children do not have a diagnosis of autistic spectrum disorder (ASD) but show some autistic tendencies or traits." My son does had an ASD diagnosis, and has many of the traits like unable to make eye contact and repetitive behaviors. I finally have some "significant clinical data" to provide the Genetics counselors with. Amazing how a Google search can turn up an article that is significant to my sons diagnosis.

The other link is helping, and provides similar information. "MECP2 duplication syndrome is a condition that occurs almost exclusively in males and is characterized by moderate to severe intellectual disability. Most people with this condition also have weak muscle tone in infancy, feeding difficulties, poor or absent speech, seizures that may not improve with treatment, or muscle stiffness (spasticity)." All except the last 2 fit my child again. 

I wish I had a dollar for every time I taught a doctor something new. I guess they just don't Google in med school. I am going to print out copies of these articles and mail them to the medical professionals who failed to provide me ANY "Clinically significant" information. 

I don't blog nearly enough....

My posts are few and far between. Maybe this is just a subliminal message that I am consumed with living my life day to day. I never make time for myself. I am always last when it comes to everything. In a effort to make over my lifestyle I am going to put forth more effort to do "me things." My number one "Me thing" is blogging (or journaling off screen).
Today I came across an article on my favorite website. The timing could not have been more perfect. For whatever reasons my thoughts and the universe aligned.  Write-about-these-three-things-daily-to-take-command-of-your-life. The things: 1. What You Eat, 2. What you did for exercise today, and 3. What you did with your life that day. What better way to bring clarity and solve problems in your life? Engage your right-brains creativity, insight, and intuition. It will also help you to focus.
Some reasons why I blog/journal; personal growth, value identification, and capturing my life story. No matter what you are blogging or journaling for there are benefits. Check out 100 Benefits of Journaling and see if any of the things listed are things you are currently seeking. One reason I want to capture my life story is because I am a parent. Obviously if anything happened to me I would want my child to see my point of view for himself, instead of the distorted point of view my family has. Him learning my point of view second hand would be devastating to him emotionally and psychologically.
From LiveJournal to Blogger I have captured snippets of my life. I could take more pictures to enhance the experience as well. I know that I am going to try and blog more frequently. Whether it is for this blog, my personal blog, or a composition notebook I need to write! Even if it is only a few scentences I have to make this a part of my daily routine.

Misinformation

One of the most annoying things about being a caregiver is the amount of information and advice that our support systems give to us. Every time there is a new trend I get bombarded with misinformation and bad advice from teachers, doctors, family members, friends, and even strangers. Immunizations, fish oil, and gluten free claims are the more common ones I come across. Social media's role also wreaks havoc. It is so easy to spread misinformation, and the audience seems endless. The information sources can be less than reputable or even informed and educated. The amount of data, statistics, and information is overwhelming. So how can you tell if a current trend or study is worth taking time out of your day to review?

There is not much help I can offer, but this is what little I can do.

For ADHD My Top 3 online resources are ADDitude, the  LDA of America website, and the CDC ADHD website. For Autism once again the CDC website is in my top 3, the ASA website, and First Signs.

This is a graphic to help distinguish the GOOD from the BAD. I initially found it on Lifehacker.com, which led me to Compoundchem.com.

Scientific studies are published all the time. Some are worth the read, but most are confusing for the general public to understand. I come across an article about once a week. Honestly most of the articles I come across have a lot of speculation and sensationalized headlines. I click to read it, and a few paragraphs in I either lost or disgusted. Even some of the books I have read are questionable. 

Everyone seems to be so concerned with a cure all for Autism. I do not doubt that valuable research is out there. There is bad science, and there is also bad information on good science. That valuable research is essentially translated, construed, transposed, and manipulated. It trickles down the hierarchy, and eventually to the public. It is difficult to decipher  if what we are reading is what initially was concluded. The media manipulates and construes the findings to cater to their own opinions and viewpoints. 

The bottom line is you know your child best. Consider the pros and cons, and side effects (when applicable) if you are trying something new or trendy. Also consider the practicality of the claim. If it seems impossible or unbelievable, it is. 

I know I never feel like I get clear direction or support. The bottom line is I am sick of being told what to do, what not to do, when to do it, then be told it was a bad idea in the first place. The only things I have found successful are behavior interventions, applied behavior analysis, and accepting there is no cure.

Listen, obey, and respect.

Today was a difficult day in terms of behavior. I was redirecting, prompting, and disciplining for 7 hours! It was the most frustrating day I have had. I can't stop crying, and of course insomnia kicks. I stress ate a bag of lays, and not a 99cent bag size. Some days are good, others are the kind that make me question why did I get out of bed.

Tonight I did my best to clearly define consequences for my childs actions. A few of the behaviors today escalated and I had to use punishment as a tactic. It is my least favorite behavioral intervention, but when my son challenged me and thought I wouldn't go through with it I followed through. I clearly defined the problem behavior, and the consequence if the behavior continued. Guess what? Mommy 1, Kid 0. I don't make threats. I follow through every time with consequences. If you don't follow through your child will never take you seriously, and you lose respect.

I do a lot of ABA, applied behavior analysis to evaluate  Antecedents, Behaviors, and Consequences . The antecedent is the trigger, or environment change that happens prior to the behavior. The behavior is the action, or what the individual does. Last but not least the consequence, which follows the behavior. Using this model to evaluate my childs behavior helps me understand why the behavior is occurring.

My childs go to behavior is the escape (or avoidance) behavior. Making excuses like I have to go to the bathroom while doing homework. Another one I contend with is my child saying he completed a task so he gets the (positive consequence) reward to go outside and do a preferred activity. By doing this he is obtaining tangible items and gaining access to a desired activity.

Other functions of behaviors are seeking social attention. The individual tries to engage another party in an activity involving socialization. Sensory stimulation is the last function of behavior. The individual engages in self-stimulating or internally pleasing behaviors,and by doing so the individual ignores or removes the externally displeasing sensation.

Today I just could not handle another episode. I know that he wants me to validate his feelings and emotions, but when they are totally irrational and irrelevant I just want to flip shit. I had to walk away from him. When he followed me I just broke down and cried.  I used the Listen, Obey, and Respect line. "You will listen to me, you will obey me, and you will respect me." It was all I could say, because anything else would have just set me off.

I can not wrap my head around how I am going to evaluate this behavior and extinguish it. I just don't know how to not lose my shit during this one particular behavior. It is hard to talk about it at support groups, because the schools staff and other parents who know my child attend the meetings. It is the one behavior that sets me over the edge. It is difficult not to crack or break down when he does it. I show my weakness when he does it, and that is what bothers me the most.

I know this is something I have to nip it in the butt now. It has been something that has been going on for at least one year now. Nobody has ever acknowledged the behavior or given me any advice on how to curb it. He has done this in front of therapists, and they have not ever intervened when it occurs. I honestly would not be insulted if someone did intervene.

If you have any advice please advise! I am losing my sanity over this.
Thanks for reading!

Preparing for this years Committee On Special Education (CSE) meeting. (revisions ctd.)

Well this year I got a head start on preparing for my CSE meeting. I put together this awesome binder last year, and so plugging in this years concerns and information was a lot easier for myself. There are a ton of links to  the materials included in my binder. I will list those links at the end of this entry. I might add some links later, so be sure to come back and check in a few weeks.
I consider myself an advocate. When it comes to my child I put a tremendous amount of effort into preparing for parent teacher conferences, doctor appointments, and any other meetings and appointments. Parent teacher conferences and CSE meetings are the ideal place to voice your concerns. You have the opportunity to address educational concerns, accommodations, referrals and evaluations, and progress or regression. You also have the opportunity to praise the teachers for their effort or teaching style (when applicable). Your audience at such meetings are the people responsible for addressing educational issues and making recommendations.
In the past I have made an enemy. One particular committee member (a district level administrator) recommended my child advance a grade level despite proof of regression, IEP goals not being met, and a laundry list of concerns from not only myself but his teachers. She stated the older students would model appropriate behavior of my child. Well my counter was the fact my child did not model age appropriate behavior in the classroom with said students that school year. My child was actually 2-3 years behind developmentally in comparison to his/her chronological age. I asked her how she expected my child to model appropriate behavior with the developmental delay. I also was concerned that my childs disruptive behavior in the classroom would impact the other students ability to learn. I eventually got my way by addressing the school principal, teacher, and psychologist in a summer meeting after I had a new diagnosis established. The district level administrator have no involvement whatsoever in that meeting, and the committee approved the change without any hesitation. That disagreement motivated me to come to the meetings better prepared.

Some of things I includes in my binder is an About Me worksheet, completed by my child. I make 2 copies, one for myself, and one to give to the committee. I also do a strength and weaknesses worksheet. I include any evaluations I have done outside of the district, and any evaluations or surveys I requested the teachers complete (Vanderbilt for example).
I always include samples of work related to the concerns that the school should be addressing. For example my childs handwriting is illegible at times. I always include those samples because his handwriting is not improving. Neat work is evaluated and included as a category on report cards. My childs grades are affected by his handwriting, despite having a diagnosed developmental delay in motor skills. I also include math assignments, and homework assignments. I usually include a previous school year assignment, a September assignment, an assignment if I notice an regression, and a current assignment. This is my "data." considering everything in education seems to be data driven or related I do my best to prove or disprove my childs academic success. They demand data, so I provide the data.
Another concern that I am going to address is the fact that last year my child got a perfect score on every spelling test, and always got the bonus words. This year he has yet to get a perfect score, and the majority of the tests reflect a less than satisfactory score. Next year I know there will be more words on a weekly basis. I consider this regression. I know one particular person will be in disagreement, but I am going to stand up for my child. I feel that they homework does not accompany the class work. The reading assignments in the
previous grade level had all of the spelling words included in the stories. This year that is not the case, and I notice a significant difference in his scores.
You have to advocate for your child every year. With any sign of progress the CSE will try and take away services from your child. I have seen a reduction in the amount of time with my childs OT, and his progress reflects that reduction. I am hoping for an increase, but will not argue if they keep the amount of time the same. I have to pick my battles.
This year I have a major evaluation that will be done prior to the next school year. I have waited for this evaluation for 4 years. I know that this evaluation will change the course of my childs education. So if there are any major disagreements I will have medical evidence to back me up when I have to amend the IEP.
I hope the links I have included are helpful. If you have better resources or other items to add don't hesitate to comment.

The following items I include to let the Committee know I am well informed and educated in the IEP process. Even if you don't read them lay them out on the table.
Helpful Acronyms
New York State Procedural Safeguards Notice Every year the school district mails this with the CSE meeting notice. This state the rights and responsibilities of the district, and your rights.

I also include sample letters and any written letters I have from previous years.
Sample Letters

My child also has an ADHD diagnosis. ADDitutde magazine has a lot of great free resources. You do have to give them your email address to gain access, but they are all great checklists and tools I have added to my binder.
ADDitude Magazine School Accommodations download.
Steps to a Well Behaved child.
12 steps to listening.
Get-the-most-from-special-education-meetings.
Never-be-late-again!
Smart-comebacks-to-adhd-doubters.

I have found a nice set of resources published by a non-profit parent advocacy agency in Virginia. One of my favorites is the Email Communication Factsheet PDF,
PEATC.org Parent Info Resources

This year I have added testing accommodations to the binder, because my child will have to participate in state testing next year. I have no printed every page, but I included appendix B, and also pages 27 and 33 I did include.
http://www.p12.nysed.gov/specialed/publications/policy/testaccess/manual506.pdf

There are plenty of resources available, especially online. I read a lot of books and do the research. These are just a few of the things I include.

Autism Awareness Day 2014

Well I haven't ever really been public about this, and there are days when I don't even know if I can accept it. I am a parent of a child diagnosed with Autism. About one year ago we got the official diagnosis. I have always advocated for my childs exceptional needs, and have catered to his behaviors and differences his whole life. I just don't know if I fully accept the diagnosis of Autism.
I have had a few blogs in my time. Never really had a following, but write to vent and express myself. I am not sure if this will even take off, but I am willing to take a chance.
The worst thing about Autism is the waiting lists for specialists. I have been waiting for 5 years for one specialist, and have yet to get an appointment. The specialist will be able to give me more direction into the treatment and therapies associated with my childs multiple diagnosis. He is not just diagnosed with Autism, he is also diagnosed ADHD. The ADHD diagnosis better suits the things that concern me about my sons behavior. I am comfortable with that, and medication has improved my childs academics dramatically.
Honestly I feel like it is a giant puzzle, and you can only add one piece at a time. You don't know how many pieces are in the box, because the number is infinite or endless. You also have to dig through the box and try to find the right piece. You could try 100 pieces that don't fit before you find the one that does.
The pieces are things that work for the other families in your network of families you know that contend with the same diagnosis of their children. You think you may have a solution in your toolbox, but it doesn't work with your child. I think that is the most heart breaking part of coping. That is why I titled this blog One Piece At A Time. You can honestly only handle one piece at a time. If you try to handle more then one you become overwhelmed and frustrated.
I hope that my readers/followers can laugh, cry, and whatever along with me. I am not fond of the puzzle symbol associated with autism, but I am learning to embrace it one piece at a time.