What is one of the things that mothers with Special Needs Children wish they could have.

A MAGIC WAND!
You wave it and your house is clean!!!
Dusting done!  Vacuuming done!  Bathrooms done!
Floors done!  Kitchen done!  Bedroom done!

“Like” us on Facebook, “Follow” us on Twitter, “Share” or “Favorite” us via any social media and you will be entered to win!! You do not have to be a mother of a Special Needs Child to enter. You are able to gift this voucher to another person.

The lucky person will receive one Voucher from Eagle Eye Cleaning for 3 hours worth of professional cleaning by 1 person, or choose 2 people for 1.5 hours! This is for the lower-mainland of BC.  Entries will be accepted till 12noon (pacific time) Monday, May 14th, 2012. Contestants who “like” us on multiple social media platforms will have one entry for each. (which means multiple chances to win!)

Good luck!

BY NICOLE BEURKENS, PHD

School-related decisions seem to be an ever-present issue for all families, but especially for families with a child with unique learning needs. Here are some tips I find myself frequently providing parents in regards to their child’s education:
Do not buy into the idea that there is a certain place out there that is a perfect fit and if you just keep searching long enough you will find it. No setting is perfect and there will be flaws and problems that crop up wherever you go. What is important is finding the right people who are willing to customize things to work for the best interest of each child – people who will bring you as parents in as part of the team and will work with you to ensure progress.
Don’t hem and haw over the next 15 years of your child’s school career when you only need to be making a decision about what to do for right now. I have met with too many parents who are paralyzed at the thought of pursuing something different from the status quo because they wonder what the ramifications will be 10 years down the road. Schools make decisions about placement and services one year at a time based on the current needs of the child and parents should do the same. You may feel that something is important for your child right now, and feel completely different about it a year from now. None of us can predict the future with certainty – no matter how hard we try! What is important is making the right decision for this point in time, and re-evaluating as you go along.
Find out what is available and choose what you feel is most appropriate for your child. Just because a service or option is available doesn’t mean you have to take it. If you don’t think the speech sessions are helping then stop them. If you don’t want the weekly home visit from the early intervention specialist then don’t do them. If you think your child needs to be home with you rather than at school for some of all of the day, then do it. Do not allow what “other people” say or do to steer you in the wrong direction with your child, or professionals to over-ride your own good judgment about what your child needs. Don’t be afraid to go against the grain or make a different choice in the best interest of your child and family.
Don’t get hung up on labels! It really does not matter what a certain classroom is called as long as the people are invested in setting high standards and helping each child reach his or her potential. Very often programs are given specific names for the purpose of paperwork and reporting – nothing more. Visit lots of places – meet the staff and watch them in action; get a feel for the environment; watch the other students. Those are the critical elements in determining whether a classroom is a good fit for your child; not whether the name of the classroom matches the label of the child.
Finally, keep the developmental level of your child and the amount in mind when making educational decisions. There is tremendous pressure to put children, particularly those with autism, into formal educational settings earlier and earlier, but that may not be the best decision for your child. If you know your child is not ready for a classroom-based program then don’t send them. There is a tremendous amount to be gained from allowing children to benefit from the guidance of their parents during the early stages of development – and that process can take longer in children with unique learning needs. The same goes for children who experience significant amounts of stress in school. Parents must carefully weigh the potential benefits of a school environment against the amount of stress that is caused and the detrimental impact of that stress over time. Each of us as parents needs to take a good hard look at our child and decide if they are ready to enter a school setting for some or all of the day, or if they need more time to be truly successful and derive benefit from that environment. Again, don’t be afraid to make a different choice; to say “thanks, but not now” to school-based options if your child is not ready.
Maybe some of these things touch on issues you have been thinking about in relation to your child’s education. Don’t be afraid to think outside the box and do what is right for your child at this point in time. You are your child’s best advocate and are in the best position to make decisions regarding your child’s education – don’t let anyone tell you otherwise!

Autism, a member of the pervasive developmental disorders (PDDs), has been increasing dramatically since its description by Leo Kanner in 1943. First estimated to occur in 4 to 5 per 10,000 children, the incidence of autism is now 1 per 110 in the United States, and 1 per 64 in the United Kingdom, with similar incidences throughout the
world. Searching information from 1943 to the present in PubMed and Ovid Medline databases, this review summarizes results that correlate the timing of changes in incidence with environmental changes. Autism could result from more than one cause, with different manifestations in different individuals that share common symptoms.
Documented causes of autism include genetic mutations and/or deletions, viral infections, and encephalitis following vaccination. Therefore, autism is the result of genetic defects and/or inflammation of the brain. The inflammation could be caused by a defective placenta, immature blood-brain barrier, the immune response of the mother
to infection while pregnant, a premature birth, encephalitis in the child after birth, or a toxic environment.

Autism has increased to epidemic proportions, affecting four times as many males and females. With a prevalence of 1/110 in the United States, 1/64 in the United Kingdom, and similar ratios in many other countries, a very significant threat to future generations is evident. This review cites documentation of causes of autism, including genetic mutations/deletions, viral infections (i.e., rubella and herpes), and encephalopathy following vaccination.

It is possible that autism results from more than one cause, with different manifestations in different individuals that share common symptoms. Integrating the data presented here, a hypothesis is that autism is the result of genetic defects, with the contributory effect of advancing age of the parents, and/or inflammation of the brain. The inflammation could be caused by a defective placenta, an immature bloodbrain barrier, the immune response of the mother to a viral or bacterial infection, a premature birth, encephalitis in the child after birth, or a toxic environment. Also, intracellular pathogens could induce an immune response, resulting in neuro-inflammation, autoimmune reactions, brain injury, and autism.

Please see full research article here:  ratajczakstudy

Recently, two dear friends approached me with the news that each of their
sons has received an ASD diagnosis. The sadness in their eyes, the
unspoken fears of their hearts – I remember it all too well. As they
poured out their pain to me, I could taste it. I’ve been there – walked
the road that they walk now – and the memories came flooding back.

My son was diagnosed PDD-NOS at the age of two. My husband’s opinion was
that there was nothing wrong with him and, if any extra support was
needed, I’d be able to handle it because I’m “the mom”. Wow. Was that
support? It sure didn’t feel like it to me – I felt abandoned.

An ASD diagnosis means serious dollars under the age of six and I found
myself quickly surrounded by professionals, each pitching their own
individual brand of intervention to me. I had no frame of reference, no
sounding board, no mentor or trusted adviser and my silent cries were left
to echo inside my head: “Will interventionists really dance and play with
my baby before I get to? Must I give my child over to a revolving door of
therapists? Will he have friends or will other kids laugh? Will he live a
meaningful life? Get married? What does this mean for my typical daughter
and our family as a whole?” I couldn’t possibly burden these educated
professionals with all my motherly fears, feelings and wishes, could I?…
In a word: YES!!!

After much trial, tribulation, solitude and disappointment, I learned the
greatest lesson of all on our journey with autism: I am MOM and I am THE
foremost expert on MY child. Period.

Do not listen to what the experts tell you to expect from your child, what
their limitations will be, what therapies or treatments are the best… in
fact, don’t even listen to me! YOU know your child. YOU are the mom, the
nurturer, the educator, the mender of all things broken and the baker of
gluten-free cookies. Do not let the professional agendas cloud your
God-given right to parent your child.

May I humbly make a suggestion? Talk to someone you trust who has already
been there. Join a support group if you don’t know anyone. Figure out what
you want for your child as a parent first, then ask the professionals how
they propose helping you get there. Make your child’s autism funding count
for something – don’t just ‘spend it’. Find a professional who will invest
in you, your family and your autistic child. Thank God I did.

Do not fall into the trap of believing that interventions and therapies
are non-negotiable, out of your control or to be ordered a-la-carte.
Instead, consider yourself the chef and your child the sous-chef, and
together you will walk through life creating the most wonderful soup,
drawing from strengths, talents, interests and abilities as your key
ingredients. You will make the right decisions at the right times and it
is always ok to change your course… after all, that’s life.

Today, my son is 10 years old and is proud of who he has become. He has
taught our family to look at life through a different lens and is the main
reason his older sister is so patient and compassionate. He loathes math
homework yet made the A Honour Roll, is a member of the school volleyball
team with a wicked serve and buckets of team spirit, took on a lead role
in last year’s Christmas pageant and rocked it, wrote his own comedy skit
for the school talent show, and enjoys many friends, playdates and
birthday parties. For the record – the professionals told me he’d never be
a public speaker.

Best regards,
Melanie Iozzo
Social Skills Instructor
Kids Matter Inc.

Melanie Iozzo and her family have been part of our Kids Matter family for many years. She now is part of our team. Melanie’s experience, education and talents make her invaluable but it is her compassion, dedication and infectious personality that cause children and parents to love her so much. We are honored to have her!

RDI
iLs
Social Skills

For the families who want services but are not finding the gateways easily accessible- this is for you! Some paperwork is required and space for these programs is limited.
If you or someone you know is looking for programs that will make a difference in a child’s life please contact us.

While the exhaustion is well, exhausting, it’s not what troubles me the most. 

What troubles me the most is the endless amount of guilt I feel for not doing better. This guilt is present every second of every minute of every hour of every single day. Perhaps that sounds dramatic to some but I assure you it’s the truth, at least my truth. I’m human and I can only deal with so much at a time. I can also only deal with so much, for so long. After awhile, it becomes harder and harder to get up in the morning. It becomes more and more difficult to maintain hope that a better day will come.

People on the outside can’t understand what this is like. It’s not their fault either. It’s like trying to understand what it feels like to be dying of some horrible disease, when you aren’t. That not your fault either. This is just one of those things that you have to experience to understand. When I say that, I don’t mean it as a slam or put down either, it’s just one of those things.

I’m going to share a personal story, in order to help you better understand where this guilt comes from.

My story, my truth

My youngest child with Autism, Emmett, has become more and more difficult to live with. I love Emmett more than I could ever express in words, however, his behaviors, as of late, are just more than what I able to handle and push me closer and closer to the brink of insanity. It’s pretty safe to say that his behaviors affect his brothers and my wife in a similar way, however, in this post I’m speaking only for myself.

Emmett is severely speech and language delayed. This makes communication a constant struggle as well as a constant source of frustration for everyone, especially Emmett.  I can’t imagine what it’s like to be scared, angry, in pain or just hungry and not be able to convey that to those who could provide you with relief from those things. I don’t think frustrating even comes close or does it justice.

Over the past year or so, Emmett has made great strides in this area and is now basically able to carry on very basic, very limited conversations. I have become pretty fluent in Emmett’s means of communication, but it’s not easy. There are some things that he can communicate very well and many, many more that he can’t.

This, in and of itself, would be challenging enough on the very best of days. However, when you add two other boys with Autism to the mix, it becomes a struggle that I honestly can’t begin to describe. Emmett, over the past several months has begun presenting with more and more Autistic traits. He has become a perfectionist to the point of crippling his life. Everything has to be perfect of Emmett simply can’t move forward. Things like, breakfast, lunch and dinner typically involve blood curdling screaming, until we can figure out what he wants. Even when we manage to figure out what he wants, the challenge is often just beginning. We still have to get him to eat. If his food isn’t perfect or he perceives an imperfection….well…Houston, we have a problem.

He has also become very, very aggressive with his brothers, my wife (his mother) and even the dogs. He goes out of his way to cause trouble. Emmett will run upstairs simply to trash the rooms belonging to his brothers. He trashes their beds and empties their drawers.

I can’t figure out what the motive behind these things are. He gets plenty of positive attention, all the time.

His brothers don’t take this well and it sets into motion an unending cycle of chaos and screaming. It is so bad at times that we literally count the minutes to Friday evening, when he can possibly go to his grandparents house for the night. Last night was one of those Fridays that we long for all week.

The unending guilt

This is where the guilt comes in to play it’s nasty little game with me. I actually reach a point where I can’t wait until he’s gone. I so desperately need the screaming, fighting and chaos to stop that I actually look forward to him leaving. Most of the time, he loves going and his grandparents love to spend time with him. However,
there are times that he doesn’t want to go and I send him anyway. I know he’s going to have a good time once he’s  there and the rest of the Lost and Tired family, including myself, needs the break from his behaviors.

I always feel like a monster sending him away. I feel guilty for not having more patience with his behaviors and not having the strength to cope better without requiring him to leave.

I realize that this is an irrational guilt but it’s guilt nonetheless. The simple fact that I enjoy the time basking in a much quieter, more peaceful and less chaotic house, makes me feel even more guilty. I know it doesn’t make sense but at the same time, it does.

When the phone call comes the next morning, to let us know he’s on his way back, I always have mixed feelings. I do miss Emmett while he’s gone. What  I don’t miss however, is hisbehaviors. Unfortunately, at this point, Emmett and his behaviors are a package deal. In other words, I can’t have one with out the other and that’s where the mixed feelings come into play. I’m excited to see and hug my little Emmett John but at the same time, I know that everything is going to pick right back up where it left off.

It’s only a matter of time before the fighting, screaming and chaos takes hold of the Lost and Tired family once again.

It seems that each and every time this happens, I’m left with less and less, patients and ability to cope. The seconds, minutes, hours and days become much longer. I will reach a point where I even become resentful because of how these behavioral problems negatively affect my family, especially Lizze. The stress, noise and chaos, make what Lizze is already going through, that much worse. It’s not like when everything slows down, she gets better. All of this has an accumulative affect on her health.

The reality is that Emmett’s behaviors are not the only one to blame here. Elliott’s constant anxiety adds a great deal to the mix as does everythingthat Gavin has going on, which is a lot.  I just choose to focus on one aspect of this for the purposes of this post.

As a father, I can’t tell you just how horrible I feel when I experience the feelings of resentment. I know that I’m only human and that it’s perfectlynormal to feel that way, especially when faced with the struggles that I am faced with, every single day of my life. Having said that, I’m not absolved of any guilt. I still feel like a bad father or a failure as a parent when I get to this point.

The reality of the situation

After me writing everything above and after you have finished reading it, we are left with reality. As a special needs father, I prefer to always deal with the reality of a situation. I would rather know what I’m up against than constantly wonder whats around the next corner.

For me, the reality of the special needs parenting situation is that nothing is ever going to be easy.  Life is always going to be a cornucopia of challenges, heartache, setbacks, steps forward and even the occasional victory. I don’t think that I was created with limitless ability, patience or resources needed to better cope. In fact, I know I wasn’t. Despite having a job that often requires superhuman abilities, I only human and therefore can only do so much.

I have found that guilt is going to be an inevitable part of my journey. Whether the guilt is warranted or not, it will more than likely, always be there.

No matter how much I put into this journey, I will always end up a day late and a dollar short. However, it won’t be for lack of trying, that much I can swear to. I have to learn to understand and even embrace my limitations. They aren’t necessarily a sign of weakness or failure. In fact, it’s entirely possible these limitations are in place for a reason. Maybe they help to keep me centered and in check.

Honestly, if these limitations were not there, I would have probably run myself into the ground, far worse than I already have, trying to do and be, everything for my family. These limitations, force me to stop and take care of myself, otherwise I would likely never stop. Perhaps it’s like a checks and balances kinda thing.

Regardless of anything, the guilt still remains, because I love my family and I know they deserve so much more than I can do for them. While I don’t relish the idea of always feeling guilty, it’s going to be one of those crosses I have to bare. Maybe someday, I can find a way to cut myself some slack. However, until then, I just have to keep on keeping on.

**Thanks for reading**

       -Lost and Tired

Originally Published by:

http://www.walesonline.co.uk/news/wales-news/2012/03/12/bullies-target-autistic-children-91466-30509503/

What is your opinion? Do you feel that we are experiencing the same thing here in Canada?

by Monica Unger, Kids Matter

An Interim IEP is a very important part of the “living document”.  Living Document meaning that it is never finished, you should be updating it, revising things that aren’t working, and keeping your school team aware of your child’s goals.

Melanie, a parent of young man with ASD in grade 4 says “The school has given us, the parents, and every opportunity to speak into and make valuable contributions to my child’s IEP.  If the school’s paperwork was to be audited – this MUST be in your child’s file… and if you find inaccuracies on your IEP (it says the principal was in attendance, but truly was not present, it says the school has implemented this support, but it hasn’t been done, etc…) that must be corrected. Your IEP is a legal document and it’s the parent’s job as much as the school’s to verify paperwork and ensure programs are followed through. That’s what the IEP’s are for.  If the IEP says the school will do it – it’s legally binding.”

Here is a link to “PARENT’S GUIDE to Individual Education Planning… Step by Step Roles in Planning Making it Work.” from British Columbia School Superintendents’ Association, British Columbia Ministry of Education

http://www.bcssa.org/topics/IEP.pdf

Also, here is a new document that should be included in your IEP.   New Form from the Ministry – This form must be signed annually and attached to the student’s IEPhttp://www.bced.gov.bc.ca/independentschools/is_forms/spec_ed/se_parent_consent.pdf

In closing, an IEP is a legally binding document that spells out exactly what special education services your child will receive and why. It will include your child’s classification, placement, services such as a one-on-one aide and therapies, academic and behavioural goals, a behaviour plan if needed, percentage of time in regular education, and progress reports from teachers and therapists.

Remember:  (School Act - http://www.bced.gov.bc.ca/legislation/schoollaw/revisedstatutescontents.pdf)

The Legislation says…

“WHEREAS it is the goal of a democratic society to ensure that all its members receive an
education that enables them to become literate, personally fulfilled and publicly useful, thereby
increasing the strength and contributions to the health and stability of that society;
AND WHEREAS the purpose of the British Columbia school system is to enable all learners to
become literate, to develop their individual potential and to acquire the knowledge, skills and
attitudes needed to contribute to a healthy, democratic and pluralistic society and a prosperous
and sustainable economy;”  for more click on the link above.

If you feel you are not getting the services your child needs to learn like everyone else in their classroom, or feel as though your school team is not providing what your child is entitled to; it may be time to look into obtaining an Advocate.  For more information on Advocacy email our office at info@kidsmattercanada.com.