Thank You (x4)

I am sure you have all seen my reminders for voting at the About.com page, and if you are on Twitter with me, you are probably sick and tired of them. So, let me say, I am SORRY. Ok, not sorry enough to stop posting and tweeting, but sorry if you are annoyed. Sort of anyway.

Through the About.com award race, I have learned some amazing things.

Most importantly, I have learned how truly remarkable it is to be a part of four distinct special needs communities.

The Adoption Community.  This community was my choice.  And after 7 years as a Foster Parent, and adopting my oldest son, this community has give me support and guidance with incredible compassion.. These parents have nurtured my ability to parent through incredibly difficult times.  This is the community that said, "Let me teach you."  To all of you adoptive moms and dads (or adoptees and/or first-moms and first-dads) out there voting for me, I thank you.

The SPD Community. This is where my heart is. My first love, my passion, my son’s first diagnosis. This is the step that brought me here. It is that first stone that I turned over successfully, and it is the first group of people both online and in person who embraced me – figuratively and physically – and said, “You are not alone.” To all of you SPD moms and dads out there voting for me, I thank you.

The Autism Community. This is where I landed, with my questions and concerns. I brought my son’s social problems, his lack of friends, his language issues and his literal thinking all to his doctor – and sure enough – he confirmed my suspicions: High Functioning Autism. And the autism community that is as diverse as the people who make it up, that is the community that reached out and said, “Let me help you.” To all of you ASD moms and dads out there voting for me, I thank you.

The Bipolar Community. This is where I was scared to go. But when my child was falling apart, raging out of control, and I needed someone to hold onto the pieces and keep my son, our family, and ME together, this is the community that said, “We’ve got you.” To all of you Bipolar moms and dads out there voting for me, I thank you.

As I work to be the Joe Montana of blogging awards, and engineer the greatest come-from-behind-victory of all times, I am overwhelmed by the fact that we – all four of these communities together – have rallied Hartley’s Life With 3 Boys from 600+ votes behind, to closing in at 140+ votes to the first place spot. That is amazing and a true testament to the value of support!

This blog and these communities are my connection to those people who understand my life. You all make it easier to parent a challenging child, who is as complex as he is wonderful.

Thank you for being my neighbors here in Holland.

If you want to share your thoughts on this blog, you can click here to comment. Please continue to vote for HLW3B by clicking here - you can vote every day from now until March 8th (and please do!).

I want to bring home the win for every SPD - ASD - Bipolar family out there - because afterall, we are in this together!

And since we are talking about supporting all of our communities, while you are there, vote for Brandon and the Bipolar Bear (my book is TOO far behind to win) by Tracy Anglada, and CABF or Fun and Function for the Online Community Award. Great people and organizations doing great things for special needs families!

XOXO
Hartley

9 Ways to Boost Your Child’s Social Skills

When most parents think of teaching their child good social skills they think of making sure their child learns to say “Please” and “Thank you.” Others may even add in that a child should offer a snack to their friends during play dates or teach them why it is appropriate to give everyone in class a birthday invitation and not to exclude anyone. All of which are great social skills to have. For every child.

But, for parents of children with an invisible disability – whether that is Autism, Non-Verbal Learning Disorder, Sensory Processing Disorder, or even Bipolar Disorder – we think of completely different challenges when we are faced with teaching our children social skills. We think of reciprocal language, sharing control during play, being flexible, and not monopolizing the conversation (that is assuming they even know how to start a conversation in the first place).

Knowing our children have these complex challenges with social skills makes teaching social skills just a part of a much larger problem. And, often our children’s social skill deficits are compounded by other challenges – such as attention issues, sensory issues, or a simple lack of interest. But that doesn’t change the fact that most of our kids want friends.

And they need help from us to make – and keep - friends.

So how do you go about helping boost your child’s social skills? Good question!

In our house we have tried many different ways to teach social skills, from the basic skills (ask someone to play with you), to the more complex (you have to respond to their question and ask another one), and the ones that have no explanation at all (how to fight ‘fair’). And over the years, I have boiled it down to those that work.

Here are 9 tips for boosting your child’s social skills:

Dinner with a "3C Kid"

I do know why we thought that going out to dinner at a real sit down restaurant was a good idea; I was bored.  You see, we spent all day Saturday at home cooped up in the house because the weather was rainy and miserable.  We did a ton; spent two hours on a game of Star Wars Monopoly, an hour building and playing GeoTrax, way too long watching TV and we had snacked on everything in the house -- so it wasn't like we hadn't done anything, but I was super bored.  Me.  I was bored.

So my hubby suggested we all go out to dinner and that we invite my parents to meet us.

We agreed on the Olive Garden, half way between our house and my parent's house, and off we went.

I was nervous.  I mean, we DON'T take the boys to restaurants all together.  Nick only eats peanut butter (really) and Matthew isn't much better (Matt doesn't even eat fast food except the occasional chicken nugget at McDonald's -- so this is a challenge).

Add to that it is 6pm at night when we decide this, and that Gabe is accustomed to eating at exactly 6pm (he is obsessed with food in the literal sense), so he would have to wait, most likely in a crowded restaurant, stay calm while I entertained Matthew to keep him in his seat.

I looked up the menu online and it said that the Olive Garden serves Pizza.  Sold.  Nick and Matt could at least order that -- whether or not they ate it is an entirely different story.

So, we were off to the Olive Garden.

And the challenges started in the over-crowded waiting room during our 20+ minute wait.

I had prepped all three with the iPhone app from Model Me Kids that shows the boy going to dinner and 'waiting calmly' for his food while driving there in the van (my hubby drove, I turned around backwards and played the app for them; didn't want you to think I was doing both).  They boys all nodded in agreement and when asked how they were supposed to wait, they echoed the short clip by saying "Calmly." 

While waiting for our table, we were given one of those buzzers -- that doesn't actually buzz -- but lights up when your table is ready. We were two feet from the reception desk, but nonetheless, we got the buzzer.

And Nick and Gabe could NOT take turns holding it.

They were insistent on keeping it (*cough* Gabe), and my mom and dad were doing an awesome job (as usual) making it into a game of sorts so that there weren't any meltdowns.

But Gabe was feeling inflexible on the matter.

At Nick's suggestion, I turned the buzzer over in Gabe's hand so the part that lights up would be visible, which didn't go well -- It was met with grunting and Gabe dropping to the ground in protest.

Chaotic Week

Summer is just chaos.  True chaos -- sometimes fun chaos, but chaos none the less.

Matthew was supposed to attend camp this week.  That was an epic FAIL.  Unfortunately, even with 3 adults to help him 'have fun at camp' he wouldn't stay, cry, ran, yelled, knocked down a fence, and didn't exactly see camp as fun.

I stayed for an hour and a half on Monday, until I had to leave to get Gabe from school, and then 1 hour on  Tuesday, which was about a billion times worse than Monday, and then I called it.  No more camp.

Matt just isn't ready for that structure without the security of a familiar enviornment. Add to that how distracting everything there is -- in a good way -- and he wasn't interested in being told what to do.  He was on his own agenda and as alway, would've prefered to do his own thing.  But that wasn't the plan.

I broke down in tears on Monday when he went with the counselor into the 'circle time' area.  I sat in the van and called Jeff and cried.  Knowing that your child struggles is such a different thing that seeing him struggle.  I know Matt has challenges, but in the safety of our home, Matt is just a beautiful and quirky child who loves Thomas the Tank Engine and laughs at his brothers.  Camp highlighted his challenges; that was hard to see.

Why *This* Makes Us Better

I say all the time that being a special needs mom makes me a better parent for all of my kids. It also makes me a better person. Here is why I think that--no actually, here is why I know that.

I am less judgmental. I used to think I knew it all about parenting—you know—how I “would do it” if it was my kid. How I wouldn’t let my kid ever do that: How in Fred Meyer, I would never let my kid demand candy or how I would NEVER let my kid have a pacifier at age 3 (god forbid older!). Now, when I see parents, doing things that I don’t necessary *understand*, instead of being judgmental, I can realize that maybe, just maybe, those other parents do know what they are doing, and it is me who doesn’t get it. You know, maybe that kid has SPD or Autism and without the pacifier to keep himself calm and organized there a giant fit-- maybe even the parents haven't gotten a diagnosis yet and are worried and concerned every time they leave the house that people like the former me are judging them. Who knows, right?

I am a better problem solver. It is amazing how after six years of teaching problem solving skills, how keenly aware I am of how to solve problems: With my all of my kids, with my friends, with my husband. I am not always great at it—meaning I am still human and can totally miss someone else’s view, but after a few years of Collaborative Problem Solving practice I am for the first time truly able to understand how it is possible to have a win-win solution. That can do wonders for your marriage, and I am really counting on it being helpful for the teenager years, especially with Nick.

I am a better friend. I have learned the true meaning of listening. After so many years of talking to people who flat out didn’t understand my life (at a time that I really didn't either), I have learned that what I wanted from them was to be heard.  I now realize how deeply we all need this -- no matter our problems, knowing that someone truly hears us, gives immeasurable emotional support.  I am now able to recognize this in the words of my friends. So when I say, “My kid had a meltdown today and trashed his room, threatened to kill me and then spent fifteen minutes crying so hard he couldn’t breathe” and my friend says, “Oh, my daughter has her first sleep over on Saturday!” I know now that she too wants the same thing as me—just simply to be heard. And I am actually able to do that for her which in turns, allows her to do it for me.

Interview with Tracy Anglada -- Author and Advocate for Bipolar Children

I was reading a blog post the other day that I found through the Child & Adolescent Bipolar Association (CABF) by Tracy Anglada and it struck me -- hard.  I think the simple fact that this woman was raising 4 children, two of which were diagnosed with Bipolar was pretty amazing -- but when I read that her children inspired her to write a book about Bipolar, I knew we had something special in common.

When Tracy heard her children's diagnosis, like so many of us, she wanted a book to explain the illness to her then 7 year old son. That was not available in 2000 - neither was a book for siblings, a book for teachers, or a book that gave these kids a voice.

So she wrote them.

Tracy is the author of Brandon and the Bipolar Bear (also available in Spanish), Turbo Max, The Childhood Bipolar Answer Book, SWIVEL to Success (Bipolar Kids in the Classroom), as well as Intense Minds:  Through the Eyes of Kids With Bipolar Disorder and all of her books can be found on her website.

Tracy says, "That sad state of affairs lit a fire inside of me that would begin what has turned into a decade of advocacy. I'm proud to say that today mothers who are faced with the same news I was ten years ago have far more resources available to them. I'm happy to have been a part of that but I also hope that new advocates will still feel the same fire I did and make a difference for future generations."

As a mom, writer, author and advocate for my own children -- I knew that I needed to talk with Tracy to learn more about her, her family and Bipolar Disorder.  And lucky for me, she agreed.  She even agreed to give away a copy of TRHEE of her books -- Brandon and the Bipolar Bear and Intense Minds and SWIVEL to Success.  (Boy do I wish I could win this one!).

So, for those of you who are parenting, teaching or caring for a child like Gabriel -- with many labels, including Bipolar Disorder -- this one is for you.

What Gets Your Goat?

I think what people fail to understand about being the parent to a special needs child is that it isn’t the ‘child’ that has us exhausted, stressed or just plain worn out, it is scheduling therapy appointments, managing medicine, educating school districts, advocating for extracurricular activities and yes, even running to the pharmacy 4 times a month for medication that puts us over the edge. It would put anyone over the edge.

For some kids, medicine is a fact of life. For Gabriel, since he is Bipolar, it is a requirement of his stability. That means, that it is my job as his mom to make sure he has his meds on time every day.

Now, the part of this that has me worked up today, is that the fact that medicines mean dealing with the pharmacy. And although the people at our pharmacy are nice enough, the whole experience drives me to the edge quicker than virtually any other thing in my life.

Let’s start with the fact that I have to go multiple times a month. Why? Because it isn’t like any of Gabriel’s medicines actually get finished at the same time each month – mostly because they are started at different times, and then changed, or upped or downed, or adjusted in some other crazy fashion to make picking them all up at the same time impossible.

Official Book Release

I am so pleased to announce the release of my book, This is Gabriel Making Sense of School.

You can view and purchase it here:

http://www.amazon.com/This-Gabriel-Making-Sense-School/dp/1426927770/ref=sr_1_1?ie=UTF8&s=books&qid=1268676748&sr=8-1

You can join the facebook group here:

http://www.facebook.com/group.php?gid=204826618923

And even better, for all of you out there who want ideas for sensory accommodations for your kiddo, I have designed a downloadable Sensory Accommodations Suggestions Page that you can download here:

http://www.hartleysboys.com/p/sensory-accommodation-suggestions_23.html

I am so excited to see this nearly 2-year long project become a reality. I believe that SPD will get into the DSM and that this book will be key in helping educate not just teachers, but the children our kids share their classrooms with.

Here is to all of you for reading our journey and your encouraging words through the process of publishing this book. A heartfelt thank you to everyone.

Now, please, spread the word!

This is Gabriel Making Sense of School is officially available!

H

Playdoh Pharmacist

"Look mom," Nick says, carrying a bowl full of punched out playdoh circles over to show me, "I am separating the small pills from the large pills."

"Pills?" I ask, "What kind of pills are you making?"

"The kind of pills that help kids who have problems with their brains. Like Gabriel."

"Awesome, Nick. We need more doctors making pills like that."

"FOR REAL." Gabe adds.

I love those boys.
H

The Next Chapter Begins (again)

I wanted to update everyone on our appointment with Dr. King yesterday. I will spare you the anticipation and get straight to the answer: the official word is "classic Bipolar" or Bipolar I. The early onset version, since, obviously, Gabe is a child.

Here is the nitty gritty of Thursday.

I picked Gabriel up from school, dropped off the Valentine's Day gifts to my boys' teachers and rushed into the van to drive Gabriel the 30 minutes to Dr. King's Seattle office.

We arrived, greeted by Jeff (my hubby) in the parking lot and headed in to wait in the waiting room, a fairly large room in what appears from the outside to be an office building. On the inside of that strangely plain exterior is an office of Autism experts that rival those anywhere.

Once inside, I check Gabriel in, only to find out my hubby already did that. Jeff laughs at me and is instantly in his I-can-only-be-sarcastic personality which surfaces in every medical situation. Some cry, some get angry, Jeff gets sarcastic.

We watch the fish tank. I only pretended.

Really, I am watching the other families in the waiting room. Carefully checking out every child. I smile at the other moms, casually, when they see I am watching their child, and his or her quirks with a sense of connection.

One boy plays puzzles on the floor and refuses to go back to see the doctor when it is his turn. His doctor, Dr. Stobbe, who is also our neurologist (and the man that diagnosed Gabriel's Autism last year) smiles his unphased-smile at the boy and his parents, and insists that it is fine if the child wants to finish his puzzle. I am quickly reminded how much I love that man. That smile is the look of understanding--not sympathy, not empathy, not compassion or pitty -- but understanding. He gets our kids.

Another family has a daughter, a little older than Gabriel, maybe 12 who is yelling some and has a very unemotional look on her face. She looks exactly like her father, who appears a little uneasy in the room -- he is smiling nervously, a little larger than he should, but at least I get to see exactly what his daughter's smile would look like.

Another family sits in the back, with their daughter, maybe 5, sleeping on the floor. But I am pretty sure it was the teenage boy with the ear phones on that was the patient.

It doesn't take long to realize we are going to wait longer than anticipated in the waiting room. I call my neighbor and good friend and ask her to get Nick off the bus, but assure her I will be back in time to get Matt. Especially since I haven't listed her as an emergency contact, so I am not sure they would release him to her anyway. She agrees no problem. I have the best friends.

At about 20 after Dr. King comes out, with another woman trailing him.

Dr. King is unassuming, dressed in a tie, with greying hair and a very warm smile. He introduces himself to Jeff and I as "Bryan King", but to Gabe he refers to himself as only "Bryan". At this Gabriel reaches out his left hand to shake Bryan's all while clutching two stuffed lions (he smuggled the second one into the office by hiding it in the plastic tub of army men--damn, I should've checked) and the plastic tub of army men and softly says, "I'm Gabe."

Dr. King introduces us to the woman with him as a colleague visiting from Minnesota who is there to observe and learn how he works.

We do a quick height and weight on Gabriel, and then off to his office.

We sit down in his office on a strange plastic feeling small couch with stars on it and the first thing he says is, "It looks like you haven't had good luck with doctors here in the past." With a smile and reference to Gabriel's head injury.

I look at him and run backwards in my mind until Gabriel was 2 and we had his follow up appointment after his head injury with a neurologist who said everything was fine and dismissed my concerns. He actually made me feel stupid when I saw him. I laughed and told Dr. King a little of our encounter with that doctor.

"He wrote in the chart that Gabriel had "normal development." And laughed that same calm I-get-the-inside-joke laugh as before. "It is even strange that he would write that phrase."

I immediately like this guy. :)

We talk a lot, about Gabriel's challenges, the changes in his mood swings and cycles over the last year and he is asking questions along the way. He asks Gabriel some questions, all of which Gabriel responds "correctly" to (gives the answer he thinks you are looking for) and again Dr. King seemed to clearly understand that is what Gabriel was doing.

He asks a few questions to the other doctor who was visiting. At one point he asks her if she sees anything besides Bipolar that might be going on. She says, "I keep thinking attachment."

I think, Seriously lady? Just because he is adopted doesn't mean he isn't attached.

Dr. King politely dismisses her suggestion and with that I move from liking him to loving him.

We go through more of the things that have gone on in Gabriel's short life and Jeff peppers the conversation with sarcastic remarks. Dr. King appears concerned (about Gabriel, but rather entertained at Jeff), recaps to clarify and has legitimately read all of Gabriel's medical history dating back prior to his placement with us.

We start to talk about medication, and Dr. King assures us that Gabriel's history of responding positively to medicine is a great sign and very encouraging. He suggests that we try an A-Typical Anti-Psychotic (he assures me the name of the medicine is scarier than what we are treating) and suggests a TINY dose (1/8 of a ml -- literally a drop) for a week to determine if we see any results -- positive or negative before deciding to jump into the med full force.

Jeff and I are on board. This is what we expected.

Dr. King asks his colleague a few more questions, and at one point she shifted her weight in her chair and said with an uneasy laugh, "This is really complicated."

Amen Sister.

We leave the appointment with high spirits. All of us. And except for the fact that I am rushing to dial my friend back and crossing my fingers she will be able to get Matt off the bus too (which she agrees to and is successful at), I am not stressed any more.

My husband says to me later, "I liked him. He didn't seem phased by what we said. Like he had heard all of this before and knows what he is doing."

Even though I have a sneaking suspicion that Jeff liked Dr. King because he laughed at his inappropriate, yet on going, sarcastic commentary, I liked him too. Dr. King does know what he is doing and has done this before. The best two things you could ask for in a doctor if you ask me.

We got home with a renewed sense of hope. Because, after all, that is all any of us have as parents: Hope.

Now, before I close this post, I want to assure you that I came home and cried. A lot. Cried as a part of the mourning, as part of the release of emotion and as part of the cleansing. But now it is time to wash away the fear and move on.

Since we can't get the new medicine until Monday (not in stock and will have to be ordered), I will report how things go in the next week or two.

Until then, thank you all for supporting me (and my family) and Happy Valentine's Day!
H

Photo: Gabriel waiting his turn to play Ping Pong in Mexico beachside.

Let The Griveing Process Begin (again)

As most of you know, Gabriel is a very complex child full of many acronyms and challenges. That said, our biggest hurdle in the last two years has definitely been his mood swings. Because of those issues, and his other destructive and dangerous behaviors we are going to see Dr. King.

Dr. King has been touted as "the" leading expert here in the Seattle area on child psychiatry. He is the expert psychiatrist for children with autism. He is the last word on diagnosis as far as the state is concerned (legal, educational, etc) and we are beyond honored to be able to see him tomorrow.

That also comes with some sense of getting a definitive answer or diagnosis. It is hard for doctors to want to label a child with Bipolar at such a young age, but in this case, I think they will. Actually, I will be surprised to hear anything else given that Gabriel's birth mother is reported to be Bipolar.

I am a little overwhelmed at the sheer thought of getting the diagnosis because it truly is a life sentence. A life of medication, hospitalization and continued psychiatric care.

I think it is fair to say that having a child with SPD, and High Functioning Autism is enough to keep me back and forth to doctors for the rest of my life, but this Bipolar thing is another beast all together.

The Bipolar Monster is something that will require the utmost dedication by our family to just keep Gabriel safe--alive--and out of jail.

My sweet boy, with the toothless smile, who really wants to be a great kid and has the most golden of hearts, will continue to fight this battle in his brain for the rest of his life.

I am just being honest when I say that this impending appointment has me grieving this (potential) newest diagnosis in what feels like a never ending string of letters.

As a mom of a child with special needs I often question my ability to do this. Sometimes I feel the stress is too great, sometimes I feel I am not qualified or educated enough, sometimes I feel like the worst parent on the planet for not being more patient, more saintly or flat out happier for what I have. Not every day is roses. Not every day feels like a blessing.

I find strength through other parents out there--those who I read about on their blogs, and those who I have the pleasure of meeting in person. But, no matter how much I fill myself up, and find support for me, I am still not positive I can do this for the rest of my life.

Don't hear me wrong -- I WILL do this. Yes, we special needs moms never quit, and this isn't the time I will either, but really, how much can one person (kid) take?

Grieving is a process. It has steps, which must be followed. And although I am no grief expert, I have charted this territory before, time and time again, with each new thing that I am faced with in response to my son's treatment or prognosis and this will be no different.

The 5 Stages of Grief

Denial

Anger

Bargaining

Depression

Acceptance

Each step means something different for the person experiencing the loss. Each acronym may represent grieving the loss of a dream or perhaps the loss of what you *thought* your future or your child's future would hold. But each of us has to experience this grief in our own time, careful not to get stuck on one step for too long (that is when you need to seek counseling for yourself), but sure to go through each step.

I think my tears come from being on the cusp of Acceptance. I have been grieving this diagnosis since we first heard it when Gabriel was 4. I believed that since he could successfully be on anti-anxiety meds that he wasn't Bipolar--a suggestion that the meds might push him to mania if he was Bipolar (which apparently is common, but I am NO expert) which didn't happen--meant he wasn't Bipolar in my myopic view. So I shelved the diagnosis.

But, then that word kept surfacing during all my late night Googling sessions -- you know what I am talking about -- where us moms start to enter symptoms into a Google search box with the theory that Google is the best MD in the world. I learned a little more, a little more, a little more and all of those light bulb moments brought me to Dr. Stobbe (which is now Seattle Children's Autism) just over a year ago and again the word Bipolar was used. Carefully.

I was told he didn't have the traditional two cycles a year--that he was only NOT stable in Spring. But, they still opted to give him Trileptal which is a mood stabilizer used for Bipolar. And it has worked wonders.

Then this last year Gabriel had his first manic cycle in fall -- anger and aggression that started around October and peeked the first week of December (read that post here). I thought we would have to hospitalize him, but we got an emergency appointment with Dr. Stobbe and the term Bipolar came up again while we increased his meds.

I am no stranger to the idea that my son could be Bipolar. But the Acceptance of him being Bipolar is another thing all together.

Gabriel is excitedly anticipating meeting Dr. King tomorrow. With a name like "King" Gabriel is really hoping this man can perform miracles and I'd be lying to say I didn't have the same hope.

Gabriel recently told me he couldn't wait to see Dr. King, and when I asked him why, he said,

"I want to ask him how to stop the fits from coming."

"You could go to your room and calm down." Nick says, obviously smarter than Dr. King.

Gabriel got angry, "NO NICK! That's not what I mean!"

"You mean that you want to not have the fit at ALL, right? You don't need to know what to do when you are having a fit, but rather want to stop them from happening." I said.

"Yes. I don't want to have the fit EVER." Says Gabriel.

He is in mental pain--mental agony from this. It takes over his brain and he can't shut it out. It worries me. To. No. End.

So I will leave you today, wishing you all well in your grieving process, no matter which step you are on. Take a minute today to think about all you have accomplished with your child, and allow yourself to move towards Acceptance while I do the same.

H

Tips For Newly Diagnosed Families With SPD

This is my Checklist for Families Newly Diagnosed with SPD (or still flailing about!). It is the basis of my therapy for Gabriel and what I rely on day to day to live. It makes me feel like I am empowered to manage his Sensory Processing Disorder instead of feeling like I am at its mercy all the time.

1. Find a qualified, trained, experienced Occupational Therapist.

You may think you already have this step down, especially since your child was probably diagnosed by an OT. But, and this is a HUGE but, you truly need to find an Occupational Therapist that has not only been trained in Sensory techniques, but one that is currently treating patients with SPD successfully.

There are many things that OTs continue to learn, and having an OT that is focused on sensory integration is key to your child’s ability to get the most out of OT now and in the future.

Did that scare you? That you might go back to OT? A great OT is there for you and your child as your child grows up (shocking to think your preschooler or Kindergartner will ever “grow up” but as it turns out, they will). You may find you go back to OT for many reasons; maybe you need a little help with something specific—like handwriting or social issues. A great OT that knows your child and family will be priceless for the rest of your child’s SPD journey.

We have been back and forth to the same amazing Occupational Therapist for over 4 years now. She has been my son’s OT, my personal therapist, my son’s social coach, his school advocate and now I consider her a personal friend.

2. Establish a Routine immediately if not sooner.

Routine is going to be your new BFF. I say all the time that routine is my dearest friend and is the one I miss the most when I don’t see her for too long. Making things predictable at home for you and your kid will reduce meltdowns. Plain and simple: Less Meltdowns = More Calm. More Calm = Happier people. That’s the way it works, I don’t make the rules, I just follow them.

Routine means you need do the same thing, every day, at the same time. Don’t freak out. You can do this. It sounds like you are sacrificing a lot, and you are sacrificing the by-the-seat-of-your-pants style of living and parenting you may be used to. But it is time to be more organized – no running to the grocery store after you pick your kiddo up from school. No staying out late at a friend’s house when you KNOW your kid can’t handle it. This is about creating a schedule within the limits of your family. Those limits will get wider as your child gets older, but until then, let’s take your child’s world from being THIS BIG and bring it down to a more manageable this big.

Now, whatever you choose to do for your base routine each day (you need before school, after school and bedtime routines at a minimum in my experience) support your routine with visuals for your kiddo. This is especially important for young kids that cannot read, but valuable for all kids. Post routine schedules for everyone to see – including your spouse! My hubby wasn’t exactly thrilled with my new routine and schedule based living, but when he realized that I felt calmer (knowing there would be less meltdowns reduces my anxiety) and our kiddos felt calmer, he got aboard the Train. Chugga Chugga Woo Woo!

3. Establish your Sensory Diet immediately if not sooner.

Your Occupational Therapist will be your best resource for this to begin with. He/she knows your child’s sensory needs the best and can give you the right tools to use at the right time (we aren’t talking wrenches here, but info, ideas and activities).

This sounds daunting, I realize that. But, when your routine is in place, you will notice patterns of behavior: Every time my kid comes home from school he is overwhelmed and needs quiet chill out time, so I give him alone play time or TV with a heavy blanket (the proprioception helps my kid from getting *too* low); however, when he was in Kindergarten he came home WIRED and high high high, so we put him in a weighted compression vest for 20 minutes every hour until bed. Did wonders. Each kid is different—but they all have patterns.

Once you identify the patterns (journaling their behavior is an easy way to figure it out), share this with your OT and ask for ways to control your child's "engine". Once you establish the basics, you will be able to mix up what to do with your child and his/her "Sensory Diet" vocabulary will expand. You will also learn to be creative; a true Master of the Sensory Diet.

For ideas on what you can do at home that your kiddo will truly LOVE read this post and for ideas on toys to have at home to aide you in helping your child get some input, check out this one.

4. Eliminate Food Dyes and HFCS.

This is just a fact for most kids I know: Fake dye, High Fructose Corn Syrup and all those chemical additives in food are just plain awful. I limit sugar intake as well, but I would rather see Gabriel eat a dozen homemade cookies then even one Oreo. And don't get me started on the birthday cakes from the grocery store! Who needs a two inch tower of red icing? Gross.

All kidding aside, we really are pumping our kids full of all of these chemicals, and in my opinion, our kids who are already "sensitive" can't handle it. Why stimulate their brain more? Check labels for hidden HFCS. I was shocked to find out that Graham crackers and Yogurt have HFCS. Ridiculous.

Yes, on some level this means I have to be the Food Nazi, but you know what, I am willing to do it. At this point in Gabriel's life, it doesn't surprise him when I walk over to him during a birthday party to scrape the frosting off his piece of cake, or insist that he only have a middle piece with no decoration. That is a treat--store bought cake. Did you know they put HFCS in that stuff?

I really believe that making the effort to eat healthier--more whole foods and lots of protein -- makes a noticable difference in my kid. And, who knows, you might just lose some weight while your at it. : )

5. Find a Support Group.

Finding other parents that get what you are going through is necessary; note I didn’t say “optional” or “a good idea”.

This is crucial to your emotional health as a parent. Being the parent of a special needs child (Yes, SPD counts as “special needs”) means you are going to have a few extra bumps in the road. Establishing a support group early on is essential. And it isn’t just for you to vent, cry or otherwise find emotional support (although you will do those), it is also so that you have resources for tips on everything from school to travel to eating. The members of your group will become your best asset!

Here are some great places to start:

www.sensoryplanet.com – This is an amazing asset for all people, parents and caregivers of sensational children. A true social network of people dedicated to Sensory Processing Disorder. A must for any parent with an SPD kiddo. Don’t forget to make “friends” with the founder Carrie Fannin while you’re there!

www.spdfoundation.net – They have a great national program of Parent Connection hosts that provide in person support in major cities (and some minor ones too!) all over the US. Nothing beats in person support. Nothing.

http://health.groups.yahoo.com/group/sid_dsi/ This is an international group where you will find people from all over the globe.

http://health.groups.yahoo.com/group/SensoryStreet/ This group, originally based out of the Bay Area in CA, has hundreds of families supporting each other. A great find!

6. Take care of yourself/Find Respite.

This is an over-used cliche: Take time for yourself. One would think that finding respite should be intuitive--right? We all get that we need some time alone, time away and time to be an adult with other adults. But, as the parent of a special needs kid, there seems to be an endless number of things we have to do for someone else, namely our kid(s), and we leave ourselves last.

I encourage you to find friends, neighbors, family or a plain old babysitter (try the special needs section of http://www.care.com/, we have had luck there) that can watch your kid(s) and let them do it. If you don't have the extra money for a babysitter, ask others for help. If that is hard for you, read this post I wrote on the challenge of asking for help and why we have to anyway!

Having time to recharge is something that many women think is a luxury--not a right. You cannot take care of someone else until you take care of yourself. As I tell my children, this is NOT a point of opinion but rather a point of fact. No need to argue facts, just accept them (they argue anyway).

Once you accept that you do need respite and you deserve respite you are nearly there! To start with, respite can be just allowing yourself a shower, preferably alone, every day. Or maybe it means you spend the extra hour after the kids are asleep doing your nails instead of doing the laundry.

Finding time for yourself really does make you a "whole" person. You deserve that, and so does your sensational kid.

7. Strengthen Your Marriage.

If you would’ve asked me if my marriage was strong four years ago, I would’ve said yes. Why? Because I really thought that since my husband and I both were “aware” of how hard our life was and since I was sure that both of us understood that there was limited time (having three sons in 40 months is no easy task!) that it meant we were OK. Truth was, it didn't.

No matter how much you understand intellectually about the difficulties of raising a special needs kid, you can't rationalize away the problems that come with it emotionally--for both of you.

The rate of divorce for parents with a child with Autism is like 83% and I can't imagine SPD parents are too far behind that stat. Our children need us--and arguably need stable parents more so than the average child.

Take the time for your marriage. This means talk to your husband, go to counseling BEFORE there are major issues, have dates, talk to each other about each other (and not just the kids for pete's sake!) and spend time being a couple.

Please don't tell me you don't have time for those things or that you don't need them. Strengthening your marriage is NEVER a bad thing--it isn't like people say "Damn, my marriage so so strong I totally wasted my time and energy working on it!" Am I right or am I right?

When you have those things in place life will seem much easier. Not simple, not spur-of-the-moment-wine-tastings-with-friends-fun, but manageable. : )

If you have anything to add, by all means please post your tips in the comments below.

Enjoy the pic--the sand says "Mazatlan 2010" and the boys are yelling "Mexico!" In retrospect, they probably shouldn't be saying a word that ended in "O".

H

Vacation Rewind

I don't have an extensive amount of time to type, but I thought some of you might like to see the visual schedule I put together for our trip. It is pretty basic, but it will get us there.

I will give each child a printed off (disposable) version, with their name on it, and a marker to help them "check off" each step as we go. They can carry it with them and refer to it at will. I like doing it this way instead of the Velcro laminated version because during a flight/trip it is hard to not lose things--and when you do lose something, there are too many places to look for it. : )

Gabriel can't believe there are 24 steps to get there--me neither. *sigh*

In case you are looking for things to read while I am gone (I don't want you to go through withdrawals!), you can check out the blog series I did on our trip to San Diego last year.

Here it is:

The plane ride to San Diego (starring Matthew out-of-sync, Gabriel impatient, and me NOT killing a flight attendant).

Our zoo goes to the zoo (our group heading to the SD zoo).

Sea World (all of us petting sharks).

A day to take it easy (the San Diego Children's museum and more).

The final leg of the journey (Legoland).

The Beach (the last day at the beach, the trip home, and thoughts on my apt to get Gabe's official "ASD" diagnosis last year).

So, until I am back with more crazy sensory-induced antics to share, keep yourselves warm and I will be drinking a toast to you by 10am Friday!

Adios Amigos,

H

101 Sensational Stocking Stuffers 2009

If you are parenting a SPD kiddo like mine, or one on the spectrum, then you can relate to my challenge with filling my kids' stockings with things that don't get played with--it is like a big fat waste of money.

Not this year.

This year I began researching things that were worth spending money on, things that would benefit my kid in multiple ways (sensory, social, small motor skill) and that my kids would like. You will see some of these things you have already thought of, but hopefully you will think of it it a new light, and some of these things will be new.

I am using this list to do my shopping and I sincerely hope it will at least provide you with inspiration for your holiday shopping.

101 Sensational Stocking Stuffers List 2009

1. Spin toothbrush -- we love these disposable things, and chew through them quick!

2. Animal flossers -- good for your teeth, and great to keep little hands (and mouths!) busy.

3. Flavored toothpaste (vanilla from Tanner's Tasty Paste) -- this stuff tastes like REAL ice cream; if your kid hates to brush, this may be the answer (they have chocolate, creamsicle and fluoride free too!).

4. Peek-a-Boo Bags -- this is a great sensory activity for little ones with tactile defensiveness. A easy way for mom to do some sensory work at home, since these adorable little bags full of soft pellets make "therapy" fun!

5. Webkinz -- it is always nice to ease anxiety by having a "friend" with you.

6. Snacks -- something not candy, so that when they open their stocking, they can eat what they get--even for breakfast. The link goest to my favorite new meals (Gabe takes them every day for lunch) which are prepackaged--but not crap. They even include a dessert in each box. Mmmmm.

7. GFCF Candy -- this is an extra special treat for kids on the diet. The link is a list of options, so you can pick what your kid would love best.

8. Fidget Toy -- we have this great, metal, small (a little bigger than a quarter) fidget toy that is just as fun for me as it is for Gabe. Originally designed for kids with ADHD. Use discount code save15 when ordering--the company has offered my readers a discount. WOOO HOOO!

9. Chew Stixx -- this is a great, scented, safe to chew, pocket sized object for kids to carry with them. We have 4 of them. :) Use discount code save15 when ordering--the company has offered my readers a discount. WOOO HOOO!

10. Pencil toppers -- lots of options out there, but toppers you can chew are terrific.

11. Pencil grips -- good for children that are struggling with handwriting (like mine!)--ask your OT for good direction on which grip will work best with your child.

12. Rubix cube -- something to keep your child's mind and hands busy--a requirement at our house.

13. Numbers slide puzzle -- old school but still fun. My boys love ours, and truthfully, so do I.

14. Personalized puzzle (Snapfish) -- take a photo of your kid, and make it into a puzzle you can do on the go. Obviously you can just buy a puzzle too. LOL

15. “Happy Thoughts Book” (Snapfish) -- a small flip book full of the most fun memories your child has--visit from Grandma, birthdays, family vacations--pull it out when you need to "snap" him out of a bad mood (do you think that is where "Snap"fish got its name? hmmmm). The smaller books are also AMAZING to buy in bulk and give out to family and friends for any occassion (especially wiht multiple book discounts!), they can be seen here.

16. Paint Brushes -- give your little artist a new set of brushes; these are specifically good for young kids or kids with lower small motor ability.

17. Smencils--Scented colored pencils -- scented pencils give an incentive to practice coloring and writing.

18. Sensory videos (Bear in the Big Blue House) -- although this only covers 5 of the SEVEN senses, it is a pretty cute show. I tried to get them to make it all seven senses, but they won't take my calls (something about a restraining order? Kidding--LOL).

19. Water Flutes-- noisey, but great fun in the bath.

20. Water bottle with straw -- great for in class, in the car, or just hanging out at home--these are especially cool because you can get it with your child's name on it.

21. Bath Squirters -- keep bathtime fun and add in some pinscher grasp work.

22. Bath paints/Crayons -- have a hard time getting them in the shower? Let them color the walls and practice handwriting--at the same time.

23. Glee Gum -- all natural, gluten free and allergen free. I am ordering some for Gabriel today--they also have "make your own gum" packs as well as "make your own gummy candy" packs. And if you click on the Glee Gum pic on the navigation bar (top left of this page) OR YOU CAN CLICK HERE you will be taken straight to a Buy One Get One Free coupon that Glee Gum created esepcially for HLW3B readers! I LOVE THIS COMPANY!!

24. Slipper socks with grippy feet -- cold feet are no fun, but slipper socks with grippy feet are terrific at any age. These are from Lands End, a fave of mine.

25. Scented lip balm -- 'tis the season for chapped lips. Stop the cracking with some festive holiday scented lip balm. Careful they don't eat it.

26. Gloves/mittens -- keep hands warm with soft cotton gloves or mittens. While you are on Old Navy's site (which has flat shipping), check out the matching hats and scarves!

27. Whistle -- great for proprioceptive input -- and pretending you're a cop.

28. Kazoo -- hum along to all of your favorite songs.

29. Harmonica -- teach them to play for real, or just let them pretend.

30. Wii Sports -- I recently learned how this game was being used to help kids "cross the midline"-- what a smart idea! This is the only thing on my list that is expensive--so don't let it throw you off!

31. Diji games -- kind of like DS, only educational. Great incentive to work on spelling and math.

32. Spy scope -- give them a secret mission -- spy out the windows or search the house.

33. Small note pad -- encourage writing smaller with their very own little note pad to write down clues.

34. Magnifying glass -- got to have something to find the clues!

35. Small car -- great option for traveling; a must for any adventure and a new one only sweetens the pot.

36. Action figures -- just like having a car, a Star Wars guy, Transformer, or whatever girls carry with them (wow, clueless on that), is a good way to increase dramatic play.

37. Key chain for backpack -- my boys love to have things on their back pack -- plus it gives them something to play with on the bus or while waiting in line at school.

38. Sand Blocks -- these are going in our stockings this year! Also check out the water and glass bead versions--great visual!

39. Watch -- great for kids that are learning to tell time, or just those who are concerned about what time it is -- all the time.

40. Bubbles -- blowing bubbles is a great proprioceptive activity--don't let it be just for summer!
41. Pokemon cards -- or whatever other kind of collecting cards your child is into--encourages reading and gives something for them to focus their organzing energy on--mine's a little OCD :).

42. Handy Manny tools -- these have been great for my 4 year old--he can "fix" things all over the house.

43. Music cds -- get your child's favorite music, whether they like classical or "Kidz Bop" like Nick, you are sure to have a hit.

44. Noise Quieting Headphones -- keep ears covered and muffle the sounds of unwanted noise--and look cool doing it.

45. Fruit -- OK, my mom-santa gave me fruit when I was a kid, and I hated it; now I love giving it to my kids (Gabe really loves to find an orange in his stocking) because it takes up so much room. I don't give them Harry and David, but I sure wish Santa would give some to me. LOL

46. Card game (Uno, Go Fish) -- Uno (they have themed decks, like this Christmas Charlie Brown one) is a great game that the whole family can play!

47. Flash cards -- give them the first 100 site words, math facts or other educational cards. Having their "hands on" the lesson makes learning more fun.

48. Legos -- small Lego sets can easily be built and then taken apart to do again. I also found this great Lego Advent Calendar which is a terrific way to show visually how many days until Christmas--great for reducing anxiety.

49. Bionicles -- a small motor skill building activity is vauable any time--and a good play date toy to engage new friends in.

50. Bakugan -- I know nothing about these, but do know that lots of kids are into them which gives our kids an opportunity for social play that NT kids might relate to (and they fit in the stocking nicely!).

51. Peek-a-Blocks -- great for toddlers, and they have a few different sensory sets, including this one which is "sounds".

52. Little People -- great for little hands, especially with the little vehicles for both girls and boys.

53. Ta Doodles -- bring out the artist in your little one without worrying about small motor skills--these fit easily in little hands and are adorable!

54. Playdoh/clay -- great to have any time.

55. Playdoh accessories -- there are so many, including Star Wars stampers, confetti makers and this adorable Hungry Hungry Hippos set.

56. Stamp w/ink set -- this is a great activity, the pressing and transfering is great for our kiddos.

57. Taggie Blanket -- no matter how old you are, a nice soft blanket with a satin edge can be calming, especially on the go.

58. Santa Buddies-- a new movie is always a hit for us on holidays! It gives structure to the day and allows for a "cool down" period (especially under a heavy blanket).

59. Books (Junie B. Jones or Magic Tree House) -- find a good kid's holiday themed book to encourage your child to read, and give them something to hold onto the holiday spirit.

60. Tickets to movies -- with the AMC Sensory-Friendly films showing all over the country every month, tickets to the movies couldn't be a more sensational gift.

61. Microwave popcorn -- makes everything better.

62. Fidget balls -- these are great for sensory input when your child needs to sit for long periods of time or just seems to need something to do with his hands.

63. Flash Light -- we can get enough of these--but don't forget the batteries--in bulk.

64. Ornament -- this one is adorable (I love the song I Want A Hippopotamus For Christmas), but any special ornament with their name or year is a special treat.

65. Scarf -- your kid might not like this, but I assure you it will keep them warm (and seriously, how dang cute is this scarf for only $5 at Old Navy?)!

66. Stress ball -- another great thing to squeeze in your hand.

67. Ear plugs -- funny as it may be, having these on hand reduces the sress in our house. Remember to use care when putting these in your child's ears, and PLEASE ask your doctor if you have any concerns about it--shocking to find out, but I am NOT a medical professional, nor do I play one on TV--I just write. : )

68. Hand warmers -- a good thing to have for snow play.

69. Goggles -- keep them for the bath or shower (or we use them in the hot tub).

70. Electronic Bubblewrap -- really, just genius.

71. Tootsie Roll Bank -- a tradition at our house.

72. Temporary Tattoos -- get holiday ones and give your kids something to do after they open presents.

73. Theraputty -- they have a great 2 oz version to fit right in their stocking, and then in your purse! Don't forget to ask your OT which color would work best for your kid.

74. Ceiling Stars -- bedtime struggles are made easier when they have glowing stars to look at each night.

75. Flat Friends -- this product is new and really cool. It is made of 100% pure Australian sheepskin which has been shown to have calming and therapeutic effects. I personally love the wolf. Thanks to Sherri at Sensory Assault Ops for telling me about this!

76. Ice pack (themed or shaped) -- some of my kids hate ice packs, but usually a good character version makes the "owie" get better quicker anyway (even if the "owie" is really just an overreaction).

77. Band Aids in favorite character -- their own box of bandaids--go crazy!

78. Stickers -- in their favorite character are always a hit.

79. Polly Pocket-- a very cool option for a little girl, great at home or on the go. I also found this Polly Pocket Advent Calendar as well as a My Little Pony Advent Calendar which would be a fantastic way for you to count down the days to Christmas.

80. Littlest Pet Shop -- great option to encourage imaginative play.

81. Cookie Monster Building Set -- we have built the Ernie over and over, but Cookie is my favorite.

82. Barrel of Monkeys -- a great game that will help with hand eye coordination, turn taking and encourage social skill building.

83. Bike Bell-- decorating your bike is always cool.

84. Yahtzee -- a great way to have fun with the whole family -- while practicing social rules like taking turns, being a good sport and losing graciously. And this "A Christmas Story" version would only be better if the container was shaped like a lamp...if you know what I mean. : )

85. Wind Chimes -- help the wind make a new sound-- music!

86. Jump rope -- good for inside (maybe...) and outside play; help your kids' engine run.

87. Frisbee or flying disc -- fun to throw, and a great activity for increasing coordination.

88. Foam Glider Plane-- we love these.

89. Paper Dolls -- simple, classic, and still fun.

90. Bean bags -- having a few of these on hand, homemade ones are great, give a fidget toy and an instant game at home or away. The set I have linked to, is the alphabet (and they have numbers too!); a GREAT GREAT way to have a multisensory experience with letters. Love it!

91. Mood ring -- they are coming back! Give your kid the ability to monitor their own mood (sort of...I at least like the idea that they are thinking about monitoring their mood, even if the ring is inacurate).

92. Interlocked metal mind puzzles -- these are more complex than the one we have, but my boys love them and do these forever.

93. Mad Libs (or Mad Libs Jr. or Star Wars or Christmas or Christmas Carols) -- fun for kids with a good sense of humor, and even better for encouraging writing. Do you remember how fun these were? Can't wait for Santa to deliver these to our door.

94. Chewlery Bracelet -- I have said this before, but I stick by it because it WORKED for us. They have new versions, so feel free to look around at other options.

95. Sling shot Monkey -- this is just hysterical. Let them have fun, it is Christmas and you've been stressed for over a month. ; )

96. Straw Glasses -- any kind of straw is a great way to get input for our kiddos--but this just makes it silly.

97. Tape Measure (real or pretend) -- my little builders love these. You can get them at the dollar store and then when they ruin them, o well.

98. Tangle DNA Puzzle -- this is just cool. It is textured and glows--can you say multi-sensory? need I say more?

99. Blob Ball -- this is gross, and my kids usually pop them, but they are fun sensory activity while they last.

100. Super Ball -- this is one of our favorites! Take them to the local public school playground and they can throw them against the building in the covered play area. GREAT outting even in the rain!

101. Slinky -- ending with a classic, not to mention it helps with problem solving and feels cool.


Good luck shopping and Happy Holidays,
H


Now for the disclaimer:
I am sure you know this, but I have to say it any way -- I am not getting paid by any of these companies to suggest their items, just as I cannot personally vouch for any of the suppliers (although wherever possible I tried to go with larger suppliers like Amazon); this is a place to get inspriation and buy whatever strikes your fancy. It's all on you.