Friday, October 30, 2015

Autism Educational Series—Birthdays—"Autism in Our House"

Kristi is an autism mommy blogger (ack!), part time preschool teacher, stay at home mom, finder of socks, and reader of books who has the soul of a musician without the talent to back it up. You can find her on Facebook at Autism in Our House. This post originally appeared on her blog, www.autisminourhouse.com, and also on Autism Speaks.



Birthdays in Our House

These beautiful babies are about to turn ten and eight. This brings me to a time of serious reflection. I've been watching the endless slideshow of photos on our computer, sobbing, remembering, loving, feeling grateful, all those emotions and more at once.

It makes me remember our constitutional towards an autism diagnosis for BigBrudder. You may or may not know BigBrudder was born with a cleft lip and palate. We thought this would be our primary area of concern for him. For a long time it was. It still certainly occupies quite a bit of our parental thoughts and concerns, but little did we know that autism would become our main focus.

BigBrudder from very early on only liked to be held in a certain way. I would describe it as snug. He loved being swaddled and held firmly. He was always alert. Looking around and sometimes through you it seemed. He progressed normally and hit his milestones on time, mostly. Except language. Here he was hyper verbal. He didn't really babble much, perhaps because of the speech therapy he received for his cleft lip and palate. Or, it could be that we didn't baby talk. He spoke in complete sentences and loved showing what he "knew," which was a lot.

Beginning at his two year well check, I asked every year about autism. He was a toe walker, he had a compulsion about lining up his toys a certain way, he would get lost in his own little world for hours at a time and not hear us, his food aversions were severe, and the meltdowns...they could last for days. I was told every year "He's too social." They didn't see him at home. Yes, he interacted with us, but it wasn't reciprocal. Until we had the WeeOne.

The other day, the WeeOne was in the midst of a rough patch (thanks full, super, harvest moon). We talked through it, and then I told him this: "You know how BigBrudder sometimes (okay a lot of times) seems lost in his own thoughts. Well, when he was almost two and you weren't quite born yet, it was much more severe. We could call his name, we could talk to him and it was as if he couldn't hear us. All of that changed when you came in to the world. Suddenly, BigBrudder was connected to someone in a way we hadn't seen yet. He loved you more than he loved anyone before. I tell you this not to give you a burden but a gift. That is how much you are loved." The WeeOne had tears rolling down his cherubic cheeks. I said, "Baby, what's wrong?" The WeeOne Replied, "They are tears of joy. I want to tell this story to BigBrudder." To him I said, "Baby, this story is for you to hold in your heart. Hold it close now and always. Remember it when BigBrudder doesn't seem to be listening. You are his best friend, forever."

Happy Almost Birthday, my loves.

Wednesday, October 28, 2015

Autism Educational Series—Four Kids on the Spectrum—Brianna A.

Brianna has four kids: Jack (8 and in 3rd grade), Joseph (soon to be 7 {my halloween baby} and in 1st grade), James (4 and in preschool) and a step-daughter, Tyla (11 and in 6th grade, who we usually don't have during the week). You can find her at her blog, AutismHowWeRoll.



AUTISM...A DAY IN THE LIFE
I thought I would give a little insight into what a typical morning looks like in a house with four kids on the autism spectrum. Quite interesting is an understatement, to say the least.

 
A typical morning in our house looks something like this:
 
5:00-5:30---I hear one or more boys playing angry birds or constructing random creations with all the colored construction paper known to man (don't forget the tape, glue and any other possible craft item in the house), or even someone (usually the 7 and 4 year old) sawing the kitchen table with steak and butcher knives. Sometimes, only if I'm super lucky, this starts as early as 4:30...
 
5:30-6:00---Consists of me lovingly shouting in my best morning voice that the "sun is not awake- so neither should they be" (cursing under my breath and praying that this is all a dream) and even maybe convincing Dad he should get up since he has to get ready to go to work anyway and reminding him how much of a morning person I am NOT!!
 
6:00-7:00---Now it's time to "feed" the boys breakfast, which by the way is a daily battle. Having to convince the 4 yr old he can NOT have mashed potatoes or Doritos for breakfast or cooking the exact same Eggo chocolate chip pancakes with chocolate almond milk for the 8 year old is an every day occurrence. Every.Single.Day. Bribing the 7-year-old (who weighs as much as my toe soaking wet on a good day) to PLEASE at least eat a pop tart or two is also a morning ritual.
 
7:00-7:30---Now it's time to tell boys to get dressed 3,982.5 times. Guess what happens? Yup, we dress the kids. Did I mention my 4 year old loathes clothes? Oh yeah, and school. He claims sickness every day. Luckily, Dad stays on task while I pack the same lunch every single day.
 
7:30-7:50---This consists of finding that one shoe that somehow got up and walked away times three. My 8 year old has been working on tying his own shoes for the last three years. So we "encourage" him to do it all on his own. (I *might* get impatient but try to remain encouraging.) Then we celebrate when he actually "ties" his shoes but we have to help him "fix" it so it will stay (which is the equivalent to actually re-tying it). It's a long process before even getting everyone in the car (which is equivalent to herding cats, uphill, in the rain)
 
7:50-8:00---I patiently wait for everyone to buckle "themselves" all the while I try like crazy to contain myself in the front seat and not just do it myself to get it done faster.
 
8:00-8:10--- I navigate through the CRAZY parking lot at the elementary school to drop off the 8 year old. I also enjoy honking the horn at the 8 year old every day as he forgets his backpack/water bottle/chewy necklace or whatever other critical item he needs that helps him get through his day.
 
8:10-8:40--- I now get to enjoy more drive time as I take the 7 and 4 year olds to their autism school (yes it's a 30 min drive one way- some days the longest 30 minutes ever). Listening to fart noises, singing made up songs, the 4-year-old telling his brother "that's not funny," "stop looking at me," "we keep our hands to ourselves, Joe," "I HATE school! I need to stay in the car," "Mom, I'm sick and I need to stay home with you," and of course the "STOP SINGING!!" battle cries luckily take up most of the 30-minute ride.
 
8:40-8:55--- I try to unload boys from car quickly (epic fail daily) realizing we are late once again since school started at 8:30. I walk them to their classrooms while constantly telling the 7-yr-old to stay out of the puddles, don't pull the flowers off the bushes, and KEEP UP! I finally drop off 4 yr old first and take the "long cut" to 7 year olds classroom because he "doesn't take short cuts on Wednesdays" while also watching the ants walk in a straight line. And, did I mention, him being totally amazed by it EVERY. SINGLE. TIME.
 
9:00-9:30---I sit in the QUIET car on the nice long drive home!! I try not to think about what needs to be done, then of course I ….
 
LATHER, RINSE AND REPEAT the rest of the week...


 
 

 

Monday, October 26, 2015

Autism Educational Series—Anxiety—"Momtisms"

Kimberly runs a Facebook page called Momtisms and can be found at her blog as well, http://momtisms.blogspot.com/. She is also a talented crafter! Check out some of her projects on her page. The following post was originally published on her blog on August 19, 2014.



Friday, October 23, 2015

Autism Eduational Series—IEPS and School Accomodations—"Our Autism/Bipolar Journey"

My name is Janice. I am the mother to three children including a 13 year old who has Autism, Bipolar Disorder and other diagnoses. I am the Chairperson of our town's Special Education Parent's Advisory Council and volunteer for an online agency that supports families who have children with mood disorders.  You can read more about our journey on my blog at Our Autism/Bipolar Journey or on Facebook at Our Autism/Bipolar Journey.

 
School Accommodations and IEPs for Children with Autism:
There is a quote from Rod Paige (Secretary of Education) which states "There is no more powerful advocate than a parent armed with information and options." Looking back throughout the years, my son has taught me more than I ever imagined I would know about the educational system. The summer before he began kindergarten, I spent that summer studying the federal laws and state regulations, because I knew he was going to need accommodations. I read somewhere that "informed parents make the best advocates." Those words became etched in my heart. I knew he needed me to advocate for him. I became determined in getting him the help he needed. When he was in first grade, I became involved with our town's Special Education Parent's Advisory Council. After a few years, I was nominated as the chairperson. Honeybunches is now in 7th grade, just beginning our new journey of middle school. It's like a whole new world for both of us.

Here are 10 of the most important things I have learned about Educational Advocacy as a parent:

  1. You can agree to disagree. If the school district refuses to give your child accommodations you know they need, you can partially reject the IEP and request an Independent Evaluation.
  2. You know your child best. It's important for you to inform the school about your child's needs. (Giving an "All About My Child" portfolio to new teachers/professionals is important.)
  3. "Informed" parents really do make the best advocates for our children.
  4. It's okay to jump over heads. If you don't get what you need from the teacher, it's okay to let the special education director know what's going on. If you are not satisfied with communication on that level, it's perfectly okay to jump over their head to the superintendent. Honestly, I've found that CC'ing the Superintendent on emails with other school personnel gets answers much quicker. Yes, that might make some people who aren't doing their jobs properly frustrated. That's okay and leads to the next point:
  5. It won't matter in 5-10 years who you pissed off along the way (Besides your children). I used to worry about making people mad at me. I know the school likely thinks about me as "That Momma."  What will matter is that I've advocated for my child and got him the help he needed.
  6. FAPE: Free "Appropriate" Public Education. The school district does not have to give our child the "Best" education possible. They're only required to give them an "Appropriate" one.
  7. If it's not written, it didn't happen. Send all communications in writing via email or even better handwritten, but bring them to the office having the secretary initial, date and stamp "received". Then have her make you a copy. Talking on the phone or even in person isn't as "legal" as the written word. Follow up on all telephone communications in writing.
  8. Ask for more than your child really needs. Throw in some things that would be nice to have, but not absolutely necessary. That leaves "negotiating" room.
  9. Remember teachers are not the "bad guys". The majority of them have good hearts and would like to see the children they teach succeed. (They surely aren't in it for the $$$$$!) Honestly, I praise my son's teachers. With his lack of participation, refusals and other issues at school, he's a difficult child to educate. Teacher' can be good advocates for our children. When they don't provide accommodations, it's not because they don't want to.
  10. Don't let emotions get in the way of your advocating. Listen. Ask questions. Stay Calm. Take deep breaths. Try your best to stay "regulated." Laugh to keep from crying if you have to. Drink water (it's impossible to drink and cry at the same time).
My Favorite Resources:
 
Some of the books about special education that I have found helpful are:
  • Wright's Law From Emotions to Advocacy by Peter and Pamela Wright
  • The Complete IEP Guide by Lawrence Seigel (**This one is my favorite because it is easiest to read and has many sample letters**.)
Some websites that I have found helpful with alot of information about Special Education are:
 

Parent Reports to help the school get to know your child:

http://www.conductdisorders.com/community/threads/parent-report-updated.225/#axzz3gHKHcrVM
http://www.spanadvocacy.org/sites/g/files/g524681/f/files/All%20About%20my%20Child%20Guide.pdf

Claire Gagan said "Knowledge will bring you the opportunity to make a difference." Educate yourself on the things it takes to advocate for your child. You can make the most difference in their world.

Janice, from MA aka "Honeybunches' Momma"

Wednesday, October 21, 2015

Autism Educational Series—Routines—"Quirks and Chaos"


Lisa Smith is the fifty-two-year old mother of seven children ranging in ages eleven to twenty-seven. Lisa's youngest two children have special needs. Lisa's blog called Quirks and Chaos entertains and educates as she discusses parenting, autism, adoption, Fetal Alcohol Syndrome (FAS) and ADHD. Find Lisa on Facebook at Quirks and Chaos.
 
 
Routine is something most parents know about. Infants often fall into a schedule of eating and sleeping that a parent can set the clock by. Toddlers need routine so they will be well rested and feel secure. A parent might arrange their schedule around the child’s nap or feeding schedule, knowing just how much “wiggle room” they have before their child goes from happy to irritable. But as the child ages, the routine can be altered more with less of a price to pay. Times and routine can be changed without huge consequences. And eventually the words “change of plans” or “spur of the moment” do not strike fear into that parental heart at all. Their older child can be flexible in ways the younger child never could be. Life becomes easier for the whole family then. Unless…. Unless your child never outgrows the need for a strict routine. And the routine becomes even more important to them. And those irritable times the baby had when their routine was changed are NOTHING compared to the meltdown the older child with autism has when his routine is changed and he cannot count on the predictability his schedule offers him.

One of the first things we hear about when we set foot into the world of autism is routine. A child with autism often “needs” a strict routine. It is true that a huge percentage of children with autism have far less anxiety if they know what to expect next. Many children with autism do much better if they have a routine they can count on and their routine is kept. Unscheduled events, unfamiliar surroundings and unexpected happenings are met with resistance and even the dreaded meltdowns we in the autism community know so well. Something that seems so small to us might be a deal breaker to a person with autism. They “need” to be able to know what comes next.

Sometimes a caregiver can set a precedent for a person with autism before we even know what happened. Driving the same route several times in a row to get to your destination is one example of this. Sitting in the same seats around the kitchen table at every meal, using the same door every time you enter and exit your home, always using the same color or style of cup (or almost anything else), these things can become “set in stone” for the person with autism. Once a precedent is set it will not be easily changed. If you have a child with autism and have not experienced the rigidity and importance of routine then count yourself very lucky. Some of us have had the experience of negotiating with autism for even very small changes in our child’s routine and come out of the negotiations feeling victorious if we even got a concession as small as our child accepting a different color toothbrush or a different blanket on the bed.

Having said all of that, it is very important for the person with autism to learn flexibility, which is much easier said than done. My son Tate is my sixth child. Because Tate had so many older siblings involved in many activities, his schedule as an infant and toddler was nothing like I had adhered to for his oldest siblings. Tate had to take many naps in his car seat instead of in his crib. He spent many evenings in a stroller sitting at a ball field. He visited their schools for parties and other events. He was held, touched, crowded, kissed, talked to, and played with all day long in a variety of setting by a variety of different personalities. Long before I knew Tate had autism I was providing “therapies” that were teaching him to be flexible. However, even with that lack of unbending routine, Tate managed to develop some need for it. A detour sign when driving from one town to another could cause Tate a lot of anxiety. Changing the location or the style of the Christmas tree we used one year almost ruined everyone’s Christmas because Tate was so miserable about it. A parent being out of town for a few days can be torturous for my son. These things may seem like small adjustments to make for most of us but the anxiety they can cause a person with autism is far too real and painful to be counted as small. Routine equals security for the person with autism. Knowing what comes next and being able to count on that sameness can keep anxiety at bay. Unpredictability is the proverbial fingernails on the chalkboard when you live with autism.

Tuesday, October 20, 2015

Autism Educational Series—Empathy—"It's Brock's World and We Just Live in It"

After her son received an official diagnosis of autism and sensory processing disorder, Lindsay was handed some paperwork with a pat on the back followed by a "good luck you got this." She was confused as to where to go from there, so she did endless research and took to her pen and paper, thus starting "It's Brock's World We Just Live In It." She's been featured on The Mighty, Good News Network, Godvine, and Fox News, when my son's love of The Men in Blue turned into him inviting our whole local police department to his 7th birthday party. You can find Lindsay on Facebook at It's Brock's World and We Just Live in It.
 
 
Autism Vs. Empathy
 
It all started at a park one day a few years ago. My son Brock, who is on the autism spectrum, met a new friend while playing on the slides. Everything was going well until his new friend fell down and got hurt. Everyone crowded around the child, asking if he was OK, as tears were filling his eyes, except for Brock.
 
I heard it first—a loud bubble of laughter erupted from his chest—and then all eyes were on him as he fell to the ground in hysterics. I rushed to Brock as fast as I could to try and remove him from the situation, but not before a few parents started yelling that my child was extremely rude. Which, if I didn't know Brock I'd have to agree—laughing when someone is crying is rude. But what they didn't notice were Brock's nervous ticks while he was laughing. He'll usually start sucking on his clothes, pulling his ears, and sometimes pacing back and forth. I knew Brock wasn't laughing because he thought it was funny—he was scared for his friend and showing it in the only way he knew how.
 
When Brock was going through testing to see if he was on the autism spectrum I had to fill out tons of questionnaires. A lot of questions had to do with emotions such as: Does your child's facial expressions coincide with what's going on? Check yes or no. I obviously checked no. Does your child express empathy properly? Again, I checked no. Laughing or sometimes walking away wouldn't be considered expressing empathy properly, or so I thought.
 
One of the questions I'm asked frequently is if Brock lacks empathy, or if it's even possible for someone on the autism spectrum to have any empathy? If you're not looking closely it may appear that way, but if you look a little deeper you'll see that it's entirely possible to be empathetic while not expressing it in the conventional way.
 
Society expects us to all act a certain way, and if we don't we're considered to be different. We're all expected to conform to society's standards, and not look at life through other peoples' eyes. It's expected that because Brock has autism, I'm going to teach him basically not to act autistic. Sure, I want him to know right and wrong, and what's appropriate and what's not, but I think it's unrealistic to want me to change my child completely because he doesn't "fit" with what everyone else does.
 
Empathy is defined as the ability to understand and share the feelings of another. I think Brock fully understands what others are feeling, but he just can't express it the way some may be looking for. I can count on one hand the number of times he's told me "I love you" with words, and I'm not going to lie, it used to hurt. But since I've gotten to know my son in the seven years he's been alive I can say with 100% certainty that he is able to express his love without words. Sometimes it's in a high five, other times he pats my back just a little bit longer, or squeezes my shoulder. There is no right or wrong way to express ones feelings. So to answer the question: "Is it possible for someone on the autism spectrum to express empathy?" As a mother who has spent the last seven years raising a child on the spectrum, and learning everything there is to know about him up to this point, I'd have to say without a doubt, yes.

Monday, October 19, 2015

Autism Educational Series—6 Things I Want You To Know about Non-Verbal Autism—"Stories About Autism"

James is a dad of 2 boys, Jude and Tommy, who are both autistic. Originally from London, they now live in a little place called Burnham-on-Crouch, in the UK.
 
Recently he's decided to use all the extra time he gets during those sleepless nights to write a blog about his family's life called Stories About Autism, talking about the rollercoaster they find themselves on.
 
If you like his post you can also find him on Facebook, Twitter, and Instagram, where he'd love you to come and say hello! He also had an article published recently on The Mighty.
 

6 Things I want you to know about Non-Verbal Autism
 
I’m a proud dad to my two boys, Jude (7) and Tommy (4). I had huge and wonderful plans for what our lives would be like, what being a dad would be like, and the sorts of things that we’d do together.
 
So far, I’ve not so much had to adapt those plans; instead, to rip them up and start all over again.
 
Jude and tommy are autistic, having both been diagnosed at 18 months old. It’s a word and a world I knew next to nothing about back then.
 
The last 6 years have been an eye opener to say the least, as I’ve desperately tried to learn as much as I can about autism to help them have better lives. They have sensory issues to deal with, anxiety, sleep problems, and self-harming issues.  But the one thing that makes all of this more challenging is their communication problems. You see, they are both currently non-verbal. I never once thought that 7 years down the line I still would not have had a two-way conversation with them, or even that I’d never have heard them say 'Dad.' So trying to find a way to understand what they want and how they feel is everything to us, and a daily battle.
 
Most people who I meet who know little about my boys seem to be shocked by that fact. I explain that they are autistic, but when they discover they are non-verbal too, it takes them aback.  So here’s 6 things I want you to know about non-verbal autism:
 
1) Non-verbal is not that rare.
 
Let’s be honest, it’s not the autism most of the world is familiar with. It’s not the Rain Man, slightly strange, gifted type of autism people expect. Instead, it’s the less media-friendly, extremely difficult, severe end of the spectrum that people know very little about.  Yet latest research suggests being non-verbal applies to nearly 25% of people who are on the autism spectrum.
 
2) Being non-verbal is really challenging.
 
Think about it for a second.
 
Imagine being 7 years old, and wanting to tell someone that you really need a drink. You can’t say it out loud; the sounds you make don’t seem to be understood. You can’t write it down, holding a pen is too much of a commitment, let alone trying to make a mark on a page. Every other communication method your parents have tried so far just doesn’t seem to make sense. All you feel able to do is lead somebody by the hand and thrust them towards the area where you think there might be a drink. Maybe if I push them towards the tap they’ll understand, but even that can feel overwhelming sometimes.
 
If everything you ever wanted or needed during a day could only be achieved with all of this effort it’s likely you’d start to feel frustrated. Frustrated with yourself that you’re unable to find an easier way to be understood. Frustrated with your mum and dad who just can’t get it right first time, every time, frustrated that at times the world seems so confusing. When you have to battle with this frustration day-in-day-out it makes being non-verbal extremely challenging
 
3) Non-verbal doesn’t mean silent.
 
Just because Jude and Tommy can’t speak right now doesn’t mean my house is silent.  Far from it; in fact, they probably make more noise than kids who do speak.
 
Jude and Tommy both vocalise continuously, whether they’re with people or on their own. Their sounds are mainly ways of expressing their emotions, and can be purely for their own enjoyment.  If they’re having fun they’re loud and let the world know about it. If they’re feeling upset or anxious, they’re twice as loud!
 
4) Non-verbal doesn’t mean they don’t understand you.
 
It can be easy to assume that because someone is non-verbal that their understanding of language is limited too. Wrong!
 
My boys constantly surprise me with how much they understand on a daily basis. Just because they can’t say the word doesn’t mean they don’t understand what it means. As long as you keep your language simple and clear there’s a good chance they will know what you are telling them. Whether they want to respond or comply with what you say to them is another problem all together!
 
5) Communication is so much more than verbal.
 
Spoken language is only one part of how we communicate together.
 
Body language, tone, and expression are all just as important. So whilst Jude and Tommy may be lacking in the verbal department, we are able to communicate in so many more ways. They are really able to sense a person’s feelings towards them without the need for words to be spoken. If you spend time in their company, be relaxed, be accepting, and be non-judgmental. They can feel it, and they will want to interact with you when you are giving off these vibes.
 
You don’t need to talk to them to show how you feel, your body language and expressions are more than enough for them.
 
6) Non-verbal doesn’t mean it’s permanent.
 
I’ll never give up the dream that one day I’ll be able to have a conversation with my boys. Right now we’re a fair way behind, but we’re not working to the same timescale as the rest of the world. There’s no rush here. There are hundreds, thousands of stories of people developing language on the autism spectrum, at all different ages of childhood, and adulthood. Whilst we work on finding other ways to help them communicate apart from speech, so that their world will open up even more, I’ll never give up on the dream that one day they will have some spoken language, and we will have a conversation together.
 
Just because they’re unable to speak today doesn’t mean they won’t speak tomorrow.

    Saturday, October 17, 2015

    Autism Educational Series—Asperger's and Violence—"Aimlessly Shameless"

    Brian Packard, blessed husband of Anne for 26 years, and proud father of Jeff and Sam.

    Jeff "J.D." Packard is a 19-year-old college student diagnosed with Asperger’s since he was 16. He was originally diagnosed at the age of 6 with ADHD and again with the same diagnosis at age 12. A self-proclaimed nerd and pizza delivery guy extraordinaire, he’s studying electronic crime with the hope of becoming a computer technician if he’s unlucky, and a professional writer and Youtube video maker if he is lucky. His blog, Aimlessly Shameless (where this post was originally published), has the stated goal of “increasing understanding to decrease frustration,” essentially intending to keep other families from dealing with 18 solid years of constant argument and struggle like he and his parents did. J.D. has a 15-year-old younger brother (Sam) who is the greatest musical genius the universe has ever known, and he lives in Ames, Iowa, with said genius, his parents and two dogs: Daisy, the basset hound and true boss of the family and Gretchen, a ballistic missile/piranha crossbreed (usually called a miniature dachshund).



    Well, this is going to be a bit of an unusual post for me. I don’t normally deal with anything this serious; if you’ve read my blog you know it’s usually me complaining about something for a few paragraphs or so. Much as I enjoy complaining, there’s something a bit more…weighty, shall we say, that I feel needs to be addressed.

    On October 1st I was in class when one of the students, browsing CNN during a five-minute break, reported to the teacher that there had been a college shooting in Oregon. Naturally, I and everyone else who had brought a laptop to class immediately hopped over to the news websites to follow the situation. I don’t recall very much else of note happening during the day – I don’t make a habit of following the news and this wasn’t much of an exception, as horrible of a person as that makes me sound like. To be honest, there didn’t seem to be a lot of information available that day anyhow.

    After the fact, I talked with my dad about the issue with school shootings. Among other things we talked about the relation between these shootings and autism. At the time, I wondered if the UCC shooter would be revealed to have Asperger’s or autism. Turns out I may have been right – some Googling shows that the guy’s mother at least claims she had Asperger’s and so did her son. Jury’s out on the accuracy of this information so please cut me some slack if that’s not right. I feel what I need to say this anyway.

    With this information and also with the Newtown shooting a few years ago, the shooter was linked with Asperger’s. I would like to stress that most people on the spectrum absolutely will not be involved in anything like this. To quote statistics from my criminal justice class, most people with any form of mental illness are in fact many times more likely to be the victims in a criminal act than the perpetrators.

    As an example I submit myself and one of my friends – the only two people that I both know relatively well and know to have an official diagnosis of Asperger’s syndrome. Neither of us are particularly likely to do anything like this – my friend is perhaps the overall nicest person I’ve ever met in my life and while I do lose my temper from time to time and it tends to involve a lot of yelling and swearing, I have an extremely long fuse and I absolutely refuse to vent my anger through violence – I’ve done that, and after a broken door, two holes in the drywall and a busted monitor, I’ve decided I don’t care for breaking things, much less people.

    That said, I can…well, sort of…make a guess at how someone with Asperger’s could get so far gone as to consider unloading a gun into a school. The disorder’s biggest problem has always been the immense negative impact it has on communication and interacting with one’s peers. Without a group of friends around them to provide support, and with family unwilling or unable to help fill the gap, it’s relatively easy to see the consequences. They may not be murderous, or even criminal, but they’re always destructive.

    Finally I’d like to say something, though first I’ll qualify it by saying I do not in any way condone these actions. At all. Seriously, this is some of the most abhorrent behavior I can possibly conceive of and I do not make that statement lightly. But these shooters are people too. They’re lashing out for whatever reason and we as a society can stop it. They may feel like outcasts, like they’ve never had anyone they could call a friend, never had anyone to listen to them, to share a laugh or a smile with. And they don’t just snap all of a sudden – typically, according to a lecture on active shooter situations I attended at my college, they will post something to social media or mention their plans to someone.

    Basically what I’m saying is that I believe the best option by far is to reach out and never let anyone fall so far that the only thing they can think to do is to resort to hideous acts like this. I don’t know how – I’ve never been good at reaching out and connecting with people and I won’t pretend to for the sake of appearing competent in a blog post. But there’s a way to stop this. The first casualty of every shooting is the shooter. If we save them, we spare dozens if not hundreds of families unimaginable pain and heartbreak. That can’t be anything but good, right?

    Friday, October 16, 2015

    Good News—It's not Autism

    I spent over a year fighting the voices in my head that told me my daughter, Julianna, had autism. I was okay with other diagnoses, like developmental delays, speech delays, even sensory processing disorder. The school district, who had been doing the bulk of the evaluations, went along with me, because I think they sensed my trepidation concerning the word autism. Back then, it felt so final, so limiting. So I felt better believing that she could have other things, but not autism.

    When she approached her 5th birthday, I became very concerned. Her behaviors were getting out of control. I was losing my ability to care for her properly. Our family seemed like it was hanging by a thread. And the local regional center denied services because she didn't have an official diagnosis of autism on her records, only "autistic tendencies." So when she started her second year of preschool, I told the psychologist to give it to me straight. If he thought she had autism, I was ready to hear it. And more than that, I desperately needed more help for her.

    I remember sitting at the table in the conference room of the preschool, surrounded by her wonderful teachers, the school director, the therapists, and the psychologist. I already knew why we were meeting: we were finally going to put that word "autism" on her IEP, on her official reports. It would be her primary diagnosis. But I didn't realize how much it would hurt me, even being ready for it. The psychologist began reading his report, and when he mentioned autism as her new diagnosis, it stung me. Even knowing it was coming, it hurt me. It felt like I had just been pushed hard, in the chest, like the breath had been knocked out of me. I fought to hold back the tears, but it was pointless. I sat there, the parent, the representative of Julianna at this meeting, and just cried.

    I've cried at so many IEP meetings, and I've always wondered how it makes the others at the table feel. Are they uncomfortable? Is it awkward? Do they really understand why this is so hard to hear? To sit around a table and hear all these things said about your child—global delays, 1st percentile, mild mental retardation, gross motor delay, fine motor delay, speech delay, the list goes on. And now autism. But that word was key to getting her the help she needed, and the peace our family was seeking.

    I've come a long way since then. That was 7 years ago, and just this week, I began the same process with my youngest child, Nathan, who is almost 3. He was born with a cleft palate, and a duplication of chromosome 22, which puts him at risk for all kinds of delays and disorders. He's been watched closely by a team of specialists since his birth. He's had the surgery to repair the palate. He's doing speech therapy and progressing well. But because of our family history, I had to know—was autism going to be added to his list? I didn't really think it was possible for him, but considering what I'd gone through with my oldest, I didn't want to enter any type of denial phase. I wanted to face it, right away.

    He was evaluated by our regional center, the same one that denied services for Julianna year after year. I sat in the waiting room with other parents seeking answers while Nathan played with the Tonka trucks. A psychologist walked into the room with a clipboard and began studying one of the children, taking notes. I stared at that man with the clipboard and realized he was the one who evaluated Julianna over 6 years ago when I was desperate for help and answers. He was the one who told me she just had PDD-NOS, and that I should be very lucky, because she would have a bright future. He's the one that caused me to drive home on a cloud, feeling happier than ever, feeling like Julianna was better than those kids that needed more services. He's the one who wrote a report that the school district would later call "science fiction," and would lead to me fighting the regional center with everything that I had, and winning. Seeing his face again brought back chills, and I was so glad he was not the one evaluating Nathan.

    A nice woman called his name from the doorway, and we walked back to her office. After a series of questions and tests, she said Nathan was just fine. He did NOT have autism. I was expecting this, and didn't feel relieved. All I could think about was my daughter, Julianna, who still had autism.

    When I got home, I posted the news about Nathan on my Facebook page, and naturally, many people liked the post, and commented things like, "What good news!" And they're right, it is good news. Good news for Nathan. Good news for our family.

     
    But I couldn't stop thinking about Julianna. She still has autism. She's still dealing with anxiety, motor and vocal tics that she can't control, sensory issues related to food and clothing and smells and sounds, problems communicating and making eye contact, a strict schedule of therapy, a fear of swimming and water. And that's okay. She's still good news to our family. And if you asked her, she'd say there was nothing wrong with her. Sometimes I ask her, "Do you like being Julianna?" She always answers with a little laugh, "Yes, I like being Julianna."

    Yes, I am happy Nathan doesn't have autism. But even if he had been given the diagnosis, I would have felt the sting, the loss of breath, just like I did 7 years ago. Hearing the word is hard—but the healing does come, slowly. I still ache for Julianna, and know that despite her challenges, she is also good news in our family. She is teaching us, and others all around her, about kindness, tolerance, acceptance, and love. And we are blessed. I don't fear autism anymore. I am embracing it. It's not final or limiting anymore. It makes her who she is, and our family is better because of it.

    Autism Educational Series—Sleep Issues—"AspieMom: Adventures in Autismland"

    Maria is currently a SAHM to two amazing autistic boys. She lives in Ontario, Canada. She's also a passionate autism advocate, and runs/admins on several autism awareness pages on FB. She also blogs in her spare time (if there is such a thing!) You can find her on facebook at AspieMom: Adventures in Autismland or her blog, Till All the Pieces are in Place.  

    Why won’t they sleep?

    It’s 4 am. I am just settling down to sleep, after getting my 7 year old autistic son to sleep. Sound familiar? Or, perhaps you are just getting up with yours. (My youngest has trouble falling asleep, but has no trouble sleeping in. My oldest has trouble falling asleep, staying asleep, and is generally an early riser.) Either way, it’s a common problem for parents of autistic children: THEY JUST WON’T SLEEP!!

    Many of us have spent late nights listening to the same videos (on the DVD player or YouTube) playing over and over, or have found ourselves nodding off to Nickelodeon or whatever kid’s channel is on, while the kids are full of beans and bouncing off the furniture (or it seems like it’s literally the walls some nights). We wonder where they get their boundless energy from. How many times have you thought that you’d be a millionaire, if you could just bottle some of that to sell?
    There have been countless studies done. It seems that for some reason, autistic kids just need less sleep. Or maybe it’s that they really just can’t. Circadian rhythms may be out of whack, disrupting proper sleep-wake cycles. They may be overstimulated from a day full of sensory overload or too much exposure to electronic devices. They don’t produce enough melatonin (thus the circadian rhythm/sleep-wake cycle issues). They may have sleep apnea. There are anxiety issues, and nightmares (or worse, night terrors). Whatever the cause, it is exhausting and frustrating for those whose children (or themselves) are affected.

    Sleep deprivation can cause irritability, poor performance in school (or work for mom and dad), poor concentration, and memory and cognitive impairment. It can put stress or relationships. It can cause depression, obesity, ADD, stunt growth, and more. It reduces quality of life for all affected.
    So what can be done to help? Going to the doctor’s to discuss possible causes is a good option, especially if there is a possibility of sleep apnea. Melatonin supplements are considered a Godsend to many parents of autistic children. Some may need additional medication to aid in sleep as well. Don’t let anyone judge you if you and your doctor decide that sleep aids are necessary for your child. The risks from long term sleep deprivation far outweigh the risks of the medication in most cases. The same goes with melatonin. The studies released warning about the dangers of giving your children melatonin are not generally based on autistic children, (who have been shown to have melatonin deficiencies). Both of my boys use melatonin, and my youngest also takes clonidine, which has helped him a lot. It still takes him a while to fall asleep, but usually it’s between 11-1, which is much better than the 4-5 am a couple of years ago, so I’ll take what I can get!

    Other ideas that some have suggested are good old fresh air after school when possible, exercise, and restricting electronic devices (including iPads, video games, tv and phones) after dinner. It’s been shown that the glow from these devices disrupts melatonin production (or hinders the effectiveness of supplements). I know, easier said than done. An example for younger children could be: bath, story time, quiet time in bed (since most of our children rarely fall asleep as soon as their heads hit the pillow), soothing music and essential oils like lavender on the pillow, as well as administering any supplements or medications that you and your doctor have agreed upon can all help to establish a successful (or at least a bit earlier) bedtime routine.

    Even with all of these things, bedtime (or staying asleep) may always be a struggle (especially once they become teens, but that is another story/blog entirely). I’m sorry that there is no magical solution that I can offer you. If there was, I’d share it, believe me. However, don’t give up hope. With trial and error, hopefully you will be able to find a solution that works for you. Just know that you are not alone. We’re all in this together, and someone always has a pot of coffee on. ;)

    Love and blessings,

    Maria

    Thursday, October 15, 2015

    Autism Educational Series—Multiple Children on the Spectrum, Part 2—"A is for Awesome, and Autism"

    Jessica Szucki is an autism mom, a blogger, a fundraiser, a baker, a photographer, a music enthusiast, a lover of sarcasm and movie quotes, and a Canadian. She lives and loves in Windsor, Ontario with her husband Greg and three boys, Dryden, Cooper, and Lennon.  Jessica is an avid advocate and fundraiser.  She organizes a yearly t-shirt campaign, designing shirts and sweaters, selling them, and donating the proceeds to The Summit Centre for Preschool Children with Autism, which Dryden and Cooper both attend.  The campaign culminates in an Autism Awareness Day which features the World's Largest Human Puzzle Piece.  In her "spare time" she also runs iPads for Autism, a local charity designed to help get free iPads in to the hands of children with autism.  You can follow Jessica's regular writings on her Facebook blog, A is for Awesome...  And Autism.



    ....There I was in the same room where Dryden had been diagnosed,  not knowing fully what to expect, holding my baby—by this time Lennon, my third, was about nine months old.  My husband and my resource consultant were by my side to help with the baby, if need be, and to provide insights into the questions about Cooper.

    We finished the activities and the parent interview and waited for the doctor to score the results.  I wandered the halls of the centre not knowing what she was going to tell us.  It was actually like a coin flip for me—it could go either way.  I felt like Cooper had done well on the testing but I also felt like he had shown some signs.  I had no idea which way it would go.  Mild, high functioning autism, on the Asperger's end of the scale—that was my best guess.

    "Moderate to severe autism."  The words floored me.  That was the same diagnosis as Dryden.  Cooper was nothing like Dryden. And he was two and a half!  How had I not seen it sooner?!

    I beat myself up over that one for a while.  I was embarrassed that I hadn't spotted it.  I got over that one when I reminded myself that our whole team of experts was convinced that Coop didn't have autism, that six months prior, the psychologist had told me that she was 90% sure that he didn't have autism. If the pro who's been doing this since I was born couldn't see it, I couldn't be expected to, either. The signs seemed to come on so fast.

    Our family and friends were shocked, and I lost track of the number of times I heard "Are you sure? He doesn't seem like it to me," and "I'm sure it's nothing; he'll outgrow it."  But my favorite?  "Oh, I'm sure he doesn't have autism, he's just mimicking Dryden."

    Here's the thing with that.

    Their signs and symptoms are so wildly different that to this day I question how their diagnoses are so close. There is no mimicking going on.

    Dryden has never had a meltdown in his life. Never a tantrum.  I have *NEVER* in his four-plus years seen him angry.  I am not exaggerating—it just doesn't happen. He is super laid back, transitions easily, requires no routine, and is just calm all the time.  When he does cry, it's rare—about once a month—and it's heartbreakingly sad. He wails and babbles and drools for a little while, about 15 minutes, and then usually goes to sleep for the night. Cooper has meltdowns, sometimes not for days, but sometimes several in a day. He screams, and he's loud.  He snots and spits and tears run down the whole front of him, but he's mad about it.  It's a whole different kind of heartbreaking. He's also a LOT more active and wired and bounces off the walls a lot more—he has more of a need to move, jump, flip, and run.

    Dryden will only eat pureed foods. There are only about six foods that he will eat. In the world. Up until recently, he would gag when he saw us eating food that had any texture. Cooper, on the other hand, eats nuggets and hot dogs and crackers and hash browns and lots of other finger foods—nothing pureed or soft.  And he, until recently, would gag when seeing Dryden eat puree.  Polar opposites.

    Dryden stims by flipping lights on and off, squinting in to the lights, and some verbal sounds that he makes. I've never seen Cooper stim. No flapping, no spinning, no visual or verbal stims.

    Dryden is almost entirely non-verbal. He has started repeating some phrases with prompting and will occasionally make a spontaneous request for a really preferred item—usually milk, or tickles. Over the last few months Cooper has exploded verbally. He sings songs, quotes TV shows, greets and recognizes familiar people, and more. He's doing great. This morning I sneezed and he said "Bless you."  Out of nowhere.

    Dryden prefers to hang out by himself. He doesn't mind snuggling and he isn't resistant to touch, and occasionally will even initiate cuddles. For the most part, though, he's fine to play in his room by himself and sit in the corner with his blocks or a book, and I often have to work at keeping his attention, keeping him on the same level of the house as the rest of us, keeping him engaged.  Cooper? Coop's a social beast. He goes out of his way to get your attention, and to keep it as long as possible. He will climb up on the couch beside me, wrap my arm around him, snuggle in tight and say, "Hi, Mommy!"

    And my heart melts. Every. Single. Time.

    The list goes on and on. So when someone tells me that Cooper is just mimicking Dryden, you can see why that makes me crazy. He definitely has autism. When someone asks me, "Are you sure?" I like to reply, "Not all the time, but the experts who diagnosed him, they're sure."

    There's a lot of trial and error in finding what works. What worked for Dryden doesn't always, or often, work for Cooper. We have different routines and different methods for teaching each boy. It is definitely a challenge to add so many extra steps and routines and we prepare three dinners every night. One for Dryden, one for Cooper, one for Lennon and us. There's a lot of extra materials involved. For example, the only sippy cup Dryden will use, Cooper won't touch, and vice versa. So we have a lot of items that seems like repeats to the untrained eye, but are different brands or models for each of the boys. But it's worth it. Finding a breakthrough that helps one boy gives us a jumping off point to start working with the other, and we tweak things from there. I've learned a lot about different methods and techniques.

    As it stands right now, Dryden and Cooper are both in full-time therapy at a great centre. They get one-on-one care and teaching all day long. They're both making great strides, at their own paces.  They are very different from each other in so many ways, but occasionally it becomes obvious that they are brothers. Their giggles and smiles are similar, some of their mannerisms make me do a double take. 

    And Lennon is now under the same care that Cooper was as a baby. The team helps me keep an eye on him, they engage him, interact with him, and they point out the cool things that he's doing on time and ahead of schedule. And if there comes a time where we are concerned, they will set us up. I remind myself regularly that it is what it is. I can't change it, I can only accept it and make the best of it. And no matter what the diagnoses say, I know that I'm raising three of the coolest little boys that the world has ever seen, and they make my life amazing every day.

    Autism Educational Series—Multiple Children on the Spectrum, Part 1—"A is for Awesome, and Autism"

    Jessica Szucki is an autism mom, a blogger, a fundraiser, a baker, a photographer, a music enthusiast, a lover of sarcasm and movie quotes, and a Canadian. She lives and loves in Windsor, Ontario with her husband Greg and three boys, Dryden, Cooper, and Lennon.  Jessica is an avid advocate and fundraiser.  She organizes a yearly t-shirt campaign, designing shirts and sweaters, selling them, and donating the proceeds to The Summit Centre for Preschool Children with Autism, which Dryden and Cooper both attend.  The campaign culminates in an Autism Awareness Day which features the World's Largest Human Puzzle Piece.  In her "spare time" she also runs iPads for Autism, a local charity designed to help get free iPads in to the hands of children with autism.  You can follow Jessica's regular writings on her Facebook blog, A is for Awesome...  And Autism.



    Dryden is four.  Cooper turned three on October 12th.  They both have moderate to severe autism, but their stories are very different.   Today I want to delve a little bit in to what it's like to raise two boys who are completely opposites in almost every way, but carry the exact same diagnosis.

    Dryden was diagnosed with ASD at 19 months old, in January of 2013.  From the time he was 15 months old I suspected that there was something different about him.  He wasn't pointing, didn't often respond to his name, only made eye contact if he wanted to, and though he babbled a lot, he didn't have any words.  He would occasionally say "mamamamama" but he wasn't calling me Mama, he was just making noise.  He liked to play by himself, was happy to sit in his jumper for an hour at a time if I'd let him, and he looked at lights in funny ways.

    I just thought he was a funny little guy, a late talker, doing things on his own terms.  I didn't know much about children and I knew absolutely nothing about autism.

    The first time autism crossed my mind, I looked it up, and my heart sank at the red flags.  Going down the page was like reading my grocery list at the till - check, check, check.   I could tell you ten reasons that I didn't think Dryden had autism, but I could tell you 15 reasons why I thought he might.

    At the time, I was almost eight months pregnant with Cooper.  I was so scared.  What if I had a special needs child, and a newborn?  The thought was overwhelming.

    By the time Dryden has his first assessment, Cooper was three weeks old.

    By the time he was diagnosed, three months old.

    Looking back, I'm glad that things worked out the way they did.  Had I known that Dryden had autism I may have been scared to go ahead with more children, and he may have ended up an only child.  As it was, I had Cooper to think about and take care of, and it was "too late" to think about a second child.  I'm so thankful.

    As I learned about autism and siblings I knew what I was looking for in Cooper, and I swore that I would never miss the signs again, or write them off like "he's just late, he'll catch up."  By the time he was old enough to show any noticeable signs, we had a great team of professionals in place for Dryden, and they always checked up on him too.  The psychologist who diagnosed Dryden was absolutely wonderful.  She would always engage Cooper, ask questions, point out the things that he was doing on or ahead of schedule, and advise me of any red flags to watch for.

    Cooper was incredibly social, had great joint attention, loved to interact, and was earlier to walk than Dryden by almost three months.  His fine motor skills were great and he loved to laugh with us and make us laugh.  He would do a little dance or jump and then immediately turn to make sure we were watching his performance.  No signs of autism.

    Fast forward to 12 months, then 15, 18, and 20.  He still didn't have as many words as he should, and he wasn't putting two together yet.  Everything that he said was a question, and almost always in the form of a request.  More?  Juice?  Up?  Please?  Show? But never an observation or a comment.  He never pointed out the cars driving by or the cat on the couch, or asked where Daddy was while he was gone to work.

    I figured that he was likely just following in Dryden's footsteps, since he is almost entirely non-verbal and gets everything he needs without having to speak.  I thought Cooper just thought that's how it was done.  He didn't show any other signs across the board.

    I spoke to our pediatrician, who said he was probably just a late talker, and didn't seem concerned because he was meeting all of his other milestones.  I spoke to our speech pathologist, who gave me some strategies to encourage more words, but also didn't think I had a reason to worry. At the most, I thought he might have a speech delay.

    Then I spoke to the psychologist who diagnosed Dryden.  She was concerned.  She suggested a couple of phone calls I could make, some speech therapy we could get involved in, and best of all, she offered to spend an hour or so with Cooper, off the books, and give me an idea what she thought, and what we might be looking at.

    Just before he turned two, I took her up on the offer and we went to Dryden's therapy centre to visit with her.  She spent the better part of an hour talking, interacting, engaging, and throwing in little exercises that I recognized from Dryden's assessments.  When it was over she told me that she was 90% certain that Cooper did not have autism.  Unfortunately she also said that she was 90% sure that he did have *something* going on, be it a speech or developmental delay.  She gave me some advice and told me the ball was in my court if I wanted to wait a few months and do a full, on-the-books autism assessment.

    Time passed.  What seemed like overnight, Cooper started developing sticky behaviours.  He started lining up magnet letters in order from A to Z.  Over and over and over.  He would do all the capital letters.  Then all of the lower case.  Never mixing the two.  Then he would do them backwards.  And he would cry when it was time to stop.  The first time I saw him spell a word in magnet letters, it was "elephant."  By the time he hit two and a half, he was spelling words like "basketball," "hockey," "football," and "ping pong."

    He started having what I thought were meltdowns.  One day I cut him a piece of cheddar cheese.  He accepted it happily and in moments he was bawling.  Screaming.   Inconsolable.  It took me what seemed like ages to realize that the issue was simply that the piece of cheese had broken.  I cut him a new piece, and he was eventually okay.  He started having meltdowns when his toys didn't act the way he thought they should, if the magnet letters fell off the couch, if the six-foot floor jigsaw puzzle didn't fit on the chair he was trying to build it on.  I took to distracting him and hiding the toys that made him melt down.  The meltdowns didn't always pass by fixing the situation either.  If he was screaming because a toy wasn't working right, by the time I fixed the toy and handed it back, he was too far gone.  He didn't want it anymore and that made him even more upset.  We just had to wait it out.

    Sticky behaviours.  Lining up toys.  Meltdowns.  His sleep had never been ideal.  He refused to sleep in his bed, sleeping only on the couch, and at two and a half he was still waking at least once a night.  If he woke up on the couch he would silently come upstairs and climb in to my bed with me.  If he woke up in his bed he would immediately scream his face off.  I started picking my battles and he still sleeps on the couch every night.

    I started suspecting autism,  in the back of my mind.

    I told our pediatrician that I planned to book a full assessment.  She told me that I was probably being over cautious, fearful because of Dryden's diagnosis.  But then she took the time to go over the red flags list with me, and by the end of our appointment, she agreed that he should be assessed.

    We scheduled the assessment and it was booked within a few days of him turning two and a half.  (30 months is where the diagnostic module changes and we could accurately do the full assessment.)

    The day of the assessment I had crazy deja vu...


    Check back for Part Two this Evening!