Do You Have What it Takes to Become an Autism Advocate Consultant

    There's a great need in our community for Autism Advocates. Parents of newly diagnosed children often do not know where to turn, or how to get the school to work for them. For this reason and more, we need more advocates.

Do You Have What it Takes to Become an Autism Advocate Consultant?

    Being a special needs mom myself, I know how hard it is to make ends meet. I can't work outside of my home because my son is homeschooled, and has major anxiety when I'm too far away from him. For this reason, I started working freelance from home. I only do it part time because of all of my other responsibilities, but if you have the time, you could do this too.

    What our community really needs are people that are educated in state and government laws, in concern to education and special needs. Many parents need someone that knows all of the ins and outs, to direct them in how to approach their child's schools to get the help they need. I can't tell you how many times a week I am messaged by a parent that needs advice on where to turn!

    An Autism Advocate Consultant would be that person. 

How to Start a Consulting Business

    Find your niche. In this case, we're talking about Autism Advocate Consultants. Are you an autism parent? Being one yourself would be super beneficial in becoming an Autism Advocate Consultant. (Honestly, I would hire a parent that lived the spectrum life before I would hire someone that didn't.) I'm not saying you HAVE to be an autism parent, but being one would mean a lot to another ASD parent. Next, you need to dive into Wrights Law. Learn all of the ins and outs as it pertains to special children like ours. Then you would want to decide if you are going to be a state specific consultant, or work with parents from other states.

    If you're going to be state specific, then you would focus on the state in which you reside. You would learn every law as it pertains to your home state, and special needs. If you're going to work with parents in other states, then start learning all of their laws too! 

Immerse Yourself in FAPE, IEP's, 504's and more

    What is FAPE? Well, if you're going to be an autism advocate consultant, you have to know what it is. FAPE is FREE APPROPRIATE PUBLIC EDUCATION. This is a governmental law that dictates that all children, regardless of ability MUST be provided with a free public education in a manner that suits their needs.  

    You'll need to learn the difference between an IEP (individualized education plan) and a 504 plan. Since we're talking about acronyms, it would be a good time to familiarize yourself with SLP, PT, OT, ABA, TSS, BSC, and more. All of these are services provided to children with disabilities. Either by schools, or private insurance. 

Will You Be an in Person Consultant, or Cyber

    You will also want to decide if you will be an in person consultant or a cyber one. Will you have an office where parents can meet you? Will you travel to families? Or will you consult via the internet? The latter is probably the most feesible, especially if you're going to consult on all fifty states. 

    Many parents need an autism advocate to attend IEP/504 meetings. With today's technology, they can take you with them via any tablet, laptop or phone. Skype into their meeting, and help them get their children's needs met. At the end of the day, you'll not only be helping to support your family, but you'll be helping a family in need, which can be so rewarding! 

    

Waiting for the Other Shoe to Drop

    If you or someone you love lives with mental illness, then I'm sure you know this feeling. When a cycle is creeping upon you or your loved one, you know it's coming. Any day, they or you, will spiral into Hell. The signs are there....but there's nothing you or anyone else can do....

My boy on an even keel, spinning, stimming, and smiling. <3

Waiting for the Other Shoe to Drop

    That's what it's like for us. As his parents, we sit back, and we wait. Because we know, that any day it's coming. The deep, dark, depressive cycle. The one that steals the glimmer from his eyes, the smile from his face, and the hope from his heart.

    He powers through the little cycles every month, but in the spring and fall, the big ones come. It never fails. It's always waiting. Lurking. Taking it's time. Ready to pounce. To leech into his life. Each time, stealing a little more innocence from my beloved boy.

The Signs

    I've noticed he's been slowly coming down for the last week. More apt to cry for no apparent reason. Commercials and songs on tv making him shed tears. We're back to muting the tv again. (Especially the damn tiger commercial!) Sleeping ALL.THE.TIME. This child rarely sleeps. But in the past week, we have to make him get up. Literally fight him to get up, and play or do art, or anything other than sleep.

Snuggling with his fur cousin Velvet <3

    Video gaming is usually a reprieve for him. But not now. A simple loss sends him spiraling into sobs. He's head banging again too, and not to our beloved rock music either. I mean, he's getting so upset that he bangs his head for "relief from the thoughts." 

    These little signs are how I know the big one is coming. He does too. He can sense it. He feels it. He asks me, "How bad do you think it will be mama? Do you think it will be over fast? I don't want to lose a month of my life again."

    Thoughts from an ELEVEN year old boy

     A boy that struggles to make sense of life as it because he lives on the autism spectrum. He also fights this demon we call mental illness. More specifically he fights Pediatric Bipolar Disorder. 

    My son really is a superhero. Sans cape of course (except for the days when he dons his Batman one.) But he won't. Not until this cycle subsides. 

    You see, people on the spectrum perseverate. That means they have one thought, repeatedly. Day in and day out. Now add in the horrible thoughts of wanting to die from mental illness. Those fleeting thoughts don't leave. Now they are all he can think of. They play on repeat in his little mind, all day, all night. I can't imagine how that must be for him.

A Plan

    For now we live each day in waiting. Making mental notes of every sign, so we know when to jump into action.

    We have to have a plan. Up until now if he became too suicidal, it would mean a four hour ride in an ambulance to the closet mental unit that takes peds. Now however, he's "old enough" for the local behavioral science unit. I'm not really sure if that should make me feel better. Because my eleven year old boy would be in a ward with adults fighting the same battle. My baby. My world.

Suicide Watch

    Suicide watch is coming. We make sure all scissors or kitchen knives are hidden. He isn't left alone for more than a few moments. And yes, that means even in the bathroom. Because all it takes is a moment. It also means that I will now be sleeping in the living room with him. Someone has to be by his side at all times. No comfy bed. No good night's sleep. Not now. Not for awhile. This is our life. This is autism and mental illness. 

    This life isn't easy. For him, it's even harder. So on a bad day, take a moment and remember it could always be worse. 

    And if you are experiencing suicidal thoughts, please ask for help. I know, it's not always easy. Most often, my son doesn't ask either. But there are people who want to help. You can even message me if you need it ( alegionforliam@gmail.com ). But please, reach out.

Hyperacusis, Autism, and HearMuffs

     Hyperacusis is very common among autistics. You may not have heard of it by the medical name, but simply put, it's auditory sensitivities. It's hard to enjoy the world around you if certain noises or pitches actually hurt you.

Hyperacusis, Autism, and HearMuffs

    Liam was always sensitive to certain noises. I will never forget the time we were downtown to visit the craft store, and a bunch of semis were coming up main street. We were crossing the street up further, and suddenly he ripped his hand out of mine, fell to the ground, and shielded his ears with his hands.

    Thankfully at five years old, he was still small enough that I could scoop him and carry him to side walk quickly. That was a very scary moment, and one of my first learning experiences along our autism journey. (He wasn't diagnosed until he was five years old, so his Dx was fairly new when this happened.)

So What Do We Do?

    Children (and adults) on the Autism Spectrum that experience Hyperacusis often shield their ears to certain sounds, frequencies, or pitches. Often they will not go to certain places where these offensive noises happen. (For years, Liam struggled in the checkout lane of the grocery store. The beep of the scanner was excruciating for him.) Avoiding public places can socially isolate the autistic, but there is help.

    Hearing protection. A good pair of ear muffs will make their life so much better! By blocking out those painful noises, the wearer can once again enjoy the world around them.

HearMuffs by Lucid Audio

    Liam loves his HearMuffs by Lucid Audio. As his mom, I love them too. Not only are they comfortable for him to wear, but they're made with non-toxic, kid safe materials. HearMuffs are Audiologist recommended too! 

     These ear muffs feature an industry leading 22 Noise Reduction Rating (NRR.) That means they will protect their ears from not only painful, but also loud noises. Liam wears his if we're going somewhere that he knows bothers his ears. They're also handy for when he goes to the tractor pulls, mud bogs, and amusement parks. 

    They look cool too, so there's no worry of your older kids not wanting to wear them. HearMuffs come in a variety of colors. You can choose from orange, red, blue, pink, white, and more.

Kids and Younger 

    HearMuffs comes in different sizes too. The kids HearMuffs are for kids ages five to ten years old. Liam is almost twelve, and they fit him well since they're adjustable. However, if your child is younger, Lucid Audio also has HearMuffs for them too!

     To learn more, and see all of their products, visit Lucid Audio.  Right now you can SAVE 15% off your HearMuffs! Use coupon code hearmuffs15 at checkout! 

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Top Five Foods in the Autism Community

    I think one of the most common things I see in our community is how hard it is to get our kids to eat. Textures, tastes, smells, and even colors can affect what your child will eat. So I wondered, are there common foods among our kids?

Top Five Foods in the Autism Community

    I'm friends with countless autism families. I follow even more of them on Facebook. So over the years I've been taking notes on what foods are the most commonly tolerated among our kids. Because let's face it, they need to eat. So we need to know what to offer.

1.) Chicken Nuggets

     I honestly don't think I've ever met or read about an autism kid that didn't love to eat chicken nuggets. The brands may vary, and some only eat Gluten Free ones, but in general, they love chicken nuggets.

    My kid will only eat them from McDonald's, Burger King, or KFC. He refuses all store bought or even home made nuggets. But at least he's eating meat!

2.) Cereal

    I've seen a lot of autie kiddos that live off of cereal. My son and my nephew love it, but it has to be DRY. No milk! As a matter of fact, my son could eat cereal every day, all day. However, the types vary. For a few months it will be Cocoa Pebbles. Then once there's a sale and I stock up, they suddenly taste funny to him. Then we're onto the next kind. That ranges from Fruit Loops, Apple Jacks, Rice Chex or Cheerios.

3.) Pizza

    It seems that tons of autistic kids and adults alike love pizza. Again, brand and toppings vary. I personally love pizza, but like I said, only from certain places. If it's store bought, I will only eat Sam's Choice.

    My son won't touch it. Never has. He hates red sauce. Loathes it. He also hates foods touching so to him, pizza is a sensory nightmare.

4.) French Fries

    Number four on this list is fries. It seems that autistic kids love fries. In this house they have to be only fries from McDonald's. Liam will touch no other type of french fries. I however love fries from anywhere. The more grease and salt, the better.

5.) Fruit Snacks

    So this may not actually count as a food group, but some have real fruit in them, so I'm counting them. Liam will only eat Welch's fruit snacks, but since they have real fruit, I'm good with that. Autistic kids seem to love these chewy and fruity bites. If you think about it, they're great sensory input too. That squishy texture in your mouth is very fulfilling if you're a sensory seeker.

So tell me, did any of the foods in your autism home make the list? If not, what would you add?

He Thinks He's Ready, But He's Not

    As Liam gets older, I hold more about our personal lives back. We want to continue to educate people and raise awareness, but if he doesn't want to share certain aspects, I don't. Purely out of respect for the young man he's becoming.

    However today, I felt that searing pain, that we as Autism Parents, (or just special needs parents in general,) often feel. You know that ache that comes along when your child's peers are ready for "bigger" things, while your son or daughter isn't?

He Thinks He's Ready, But He's Not

    I learned early on not to compare my son's milestones to other kids his age. It wasn't worth the heart ache. We know our kids will get there when they get there, and we'll be right there waiting to cheer. So that part doesn't bother me. 

    Today however did. Because suddenly, my son became fully aware that while his peers are ready for some things, he isn't. And it ripped through his heart like a dull knife. Watching him process it washed over me like a tidal wave, leaving me wracked with pain. I'd be lying if I didn't admit I went into the bathroom to cry.

Let Me Set the Scene

    Our area schools give off Friday and Monday for President's Day, so I too give Liam the day off. This morning he had a play date here with two of his autistic friends. It went great. Afterwards, when we were heading out to my sister's, an old friend of Liam's stopped by.

    He moved away with his mom, but is here for the weekend with his gram. This boy came over to invite Liam to the skating rink with him!! Sounds amazing right?

It Wasn't....

    Like most tween kids in our area, their parents drive them to the roller rink, drop them off, and come back at 10 pm to pick them up. (Hey my parents did the same with us when we were that age. However, I also had an older sister there to watch over me.)

   So while this boy had the most wonderful intentions, and because he doesn't see Liam as "different," he invited him to go. But he can't....

For Many Reasons

    Liam isn't emotionally mature enough to be away from adult supervision for a period of time. While there are adults there, they aren't always watching, because lets face it, that rink is packed. I've seen older kids there picking on younger ones, and while I stepped in, what if there isn't anyone there when it happens to Liam?

    My son also notices that he doesn't fit in. It's because of this, that he will go out of his way to do so. Liam will do anything to get the approval of his peers. He doesn't think, he just acts. Which often has some pretty crappy repercussions.

    There will be girls. The other boys his age are into girls. Liam isn't there yet emotionally. So if his friends skate off with a girl, and leave him alone, he won't know what to do. His anxiety will set in, and he will panic. 

Saying it isn't easy....hearing it is harder.... 

    Paddy and I sat him down and spoke with him about it. Liam put his head down, and admitted that it probably wasn't a good idea. But like most kids his age, he still wanted to go.

So we gave suggestions....

"We could go with you, and hang out in the game room!"

"NO!"

"We could go, but wait outside in the car!"

"NO!" 

My hubby even spoke with our eldest Bran. (He's twenty one.) He offered to go.

"Bubby said he'll go with you!"

"NO! No one else will have an adult with them!"

    He was adamant that he didn't want his parents there, "like a baby." So we told him he could try it. We would give him my cell and he could try.... (and I was panicking inside as saw two more worry lines appear on his father's face....)

He broke down sobbing....because it donned on him, that he isn't in fact, ready....

    After about half an hour of rocking and sobbing, he told me he wasn't ready. My boy went on to say that even though he "wants to go so bad, other kids can be mean there." And so he "couldn't go." 

   As adults, it's hard for us to admit when our children can't do something. Imagine being a child and having to process that truth? It hurts. While I know that "A" had only the best intentions, and while I am super thankful that he not only THOUGHT of my son, but wanted to include him as well, I almost wish he hadn't....

I wish that for at least one more day, my son didn't have to feel that pain. The pain of watching your friends grow up, and knowing you're just not ready.....

    

Staycation Autism Style

     We're sick of winter! Feeling cooped up because of sub zero temps is getting old. So we decided to take a little staycation.

Staycation Autism Style

    As autism parents, we know autism doesn't take a vacation. But that's okay. We're accustomed to this lifestyle. However, if you're looking to break up the monotony of the mundane parts of life that we do have control over, then I suggest a staycation.

    Choose a family friendly hotel not far from home, prepare your kiddo, pack some bags and get ready to relax. Well kind of....because we know our kids are always go, go, go!

Best Western Fun

     We chose the Best Western Grand Victorian Inn in Sayre Pa. We've stayed there before for mini staycations and we know it's a great place for families.

    First and foremost the rooms are spotless. I'm picky when it comes to a hotel room, but my autie has worse OCD than I do, so he's even more picky. Liam even went so far as to combing the room with a black light. (I kid you not!) And he gives their rooms "two thumbs up!" Our housekeeper Tammie certainly rocks at her job!

Shout out to Tammie! You rock!!

    Also, let me add that the rooms are virtually sound proof. You can NOT hear your neighbors which is great for two reasons. One being our kids tend to be very loud and not get "inside voice." The other being when they need a sensory escape, the room is quiet so they can chill.

Pick One with a Pool

    Autistics are drawn to water. It calls to us and soothes us in ways that not many other things can. So when we're choosing a place to stay, a pool is a must. The Best Western we chose happens to have an indoor, heated pool, which is necessary in frigid Northeastern Pa. 

As you can see, a lot of time was spent in the pool! Even some toys came along for their autism line up.

    Bonus, it even has a jacuzzi! Holy relaxation! Play in the pool, then chill in the jacuzzi. Repeat. All day! It was just what we needed to spice up the mundane days of winter!

Free Breakfast? Yes please!

    The Best Western Grand Victorian (and all of their other hotels,) offer a free breakfast buffet. Autistics are prone to picky eating, but their buffet has so many options, that it isn't a problem. I wish I had thought to get some pictures, but Liam's plates (more than one because food doesn't touch,) were full! He chose two mini boxes of cereal (they had many of his favorites,) a cinnamon doughnut, and even a "sour" (granny smith) apple.

    I had a Belgian waffle I made myself with some yummy toppings, it was amazing! Even my picky hubby had a large plate of fluffy scrambled eggs, sausage and an English muffin. That wasn't even all of the food they had to offer!

image via Trip Advisor

Good TV's (per Liam)

    Liam goes nowhere without his Xbox One. Thankfully The Best Western has "good tv's." He knew he could take his precious gaming system and actually be able to use it. Plus, it gave us a little break when our skin couldn't possibly prune up any more from the pool and hot tub! (Liam insisted I let you all know about how great their tv's are!)

Friendly Staff

    The staff was fantastic as well. They were so friendly and welcoming. Always smiling when we would pass them at the front desk, pool desk, or in the halls. This was huge for me. It seems that lately so many people are miserable which is a real downer. I loved being surrounded by others that were in a happy mood!

Thank You Best Western!

    We had a great time, and even though we rushed home to avoid winter storm Liam, we are more relaxed and rejuvenated. So what are YOU waiting for? Take a staycation! Just be prepared to spend a lot of time in the pool! :)

Fantastically Fun Family Game Night

    How many of you enjoy family game night? We definitely do, as well as many other families. But did you know that family game nights aren't just fun, but they're GOOD for your kids as well?

Fantastically Fun Family Game Night

    I grew up with family game nights, so of course I couldn't wait to pass that tradition down to my kids. I've always felt it was an important way to bond and have fun together. Then I found out that studies were done and game nights (as well as family dinners,) help your children learn, grow and develop better than those that don't partake in family game nights.

Can you guess the word? Let me help. "PARENTING IS OFTEN S---SS-UL" ;)

Give the Gift of Fun and Learning for Valentine's Day

    We give our kid small gifts for major holidays. It cuts down of giving them extra sugars, because let's face it, kids are hyper enough without added sugars! So why not give a gift for the entire family? Celebrate Valentine's Day with a gift, and share your love, while having fun! 

Discovery Toys

    I recently came across Discovery Toys. They have a huge selection of toys and games for every age, gender, and skill set. Whether you're a special needs family, or you're just looking for some fun, then look no further than Discovery Toys. (If you are an Autism or Special Needs family, then check out their toy guide.)

    I even connected with Tessa, whom is an education leader. She is not only wonderful, but can help you choose the perfect toy for your child. Do you need to fulfill a sensory need for your kid? Maybe you want them to work on their fine motor skills? Either way, Tessa and Discovery Toys can help.

    Since we're big into our family game nights, Tessa pointed out Discovery Toys new Word Flip. When we received it, I knew it was going to be a hit with Liam. To me it's like Scrabble and Hang Man in an easier way to play.

Word Flip is Super Fun!

    It really is. It's also easy to play! The object is to guess the word before other players. Each player rolls the two dice (included) and then you either add, subtract, multiply or divide them to get a number between 0 and 9. You then flip down that number (or you can flip down a combination of two numbers that you have rolled) to reveal a letter (or a blank depending on the length of the word.)

    The first person to guess the word gets the points of the remaining numbers that are left. When the word has been guessed correctly, flip up all of the numbers, then roll up that card and put it in the back to reveal the new word. Word Flip has over 300 hundreds words that will give players varying levels of difficulty.

Spelling, Fine Motor Skills, and More

    As a mom, I love toys and games that do more than just entertain, and Word Flip does much more than that! Playing this game will not only bring your family hours of fun, but it will help expand your children's vocabulary and spelling. Word Flip helps with strategic thinking, strengthens social skills, and helps kids visualize whole from parts. In my opinion it also works those pesky fine motor skills. Flipping the letters, rolling up the next card and even rolling the dice all help kids with their fine motor skills.

Liam saw this and said, "My mama is a ......" :)

So Much More

    Word Flip is just ONE example of the many toys and games that you will find at Discovery Toys. To see more, you have to head their website, or even contact Tessa. 

Be sure to "LIKE" and follow Tessa on Facebook too! 

Snappy Self Care for Special Needs Parents

     I just had a REAL bath for the first time this week! It was glorious! I feel so clean, so refreshed.

     I know you're wondering why today was the first time all week that I've taken a bath. Well, simply put, my child has been in crisis mode since Monday. Suicide watch takes all of your time. 

    If you're a parent, you know that sometimes bathing or other self care gets put on the back burner. When you're a special needs parent, it often gets pushed further back. If you don't get respite, or you have to be with your child 24/7, taking a bath isn't feasible.

    So while I was laying there, actually soaking away a weeks worth of worries and scum, it dawned on me that I should share with you, my tips for self care when you have no time. These are seriously things that when my child is in crisis mode, I can't live without.

1.) Dry Shampoo

    When I first heard of dry shampoo I couldn't understand why anyone would need it. Then I realized, how many times I haven't been able to take fifteen minutes away from my child to wash my hair. In the event that you have to leave the house for a therapy appointment, or worse yet, an emergency room visit, you don't want greasy, nasty hair. At that moment, you feel horrible enough. You don't need another thing to weigh you down. So grab some dry shampoo. Trust me. It works and in a pinch, you'll just feel better.

2.) Baby Wipes

     I think from the time we have babies, baby wipes should always remain in our homes. They're good for so many things. These made my list because let's face it, if you don't have time to wash your hair, then you don't have time to shower or bathe. Break out the baby wipes. In a matter of minutes you can wash down your body, which will help you to feel better. Also, you don't want to stink if you have to leave the house.

3.) Facial Wipes

    When you're worn out and your face is feeling and looking greasy, you want to clean it. You don't have time to fuss around with facial products. However, if you have cleansing or toning facial wipes on hand, you can quickly clean away that dirt and oil. (Hey, it might keep you from breaking out from the stress too!)

4.) Mini Toothbrushes

    Okay, so I really don't know what these are actually called. They're tiny toothbrushes with toothpaste in them. You can find them at the Dollar Tree, and there's actually a bunch of different brands. All I know is when I can't leave my child's side, and my mouth tastes like butt, and my teeth feel gross, these things are a Godsend. Keep them on hand, you'll thank me for it.

    FOUR things. That's it! 

    These four things are my personal arsenal for when my son is in crisis mode. (Side note, COFFEE! I mean, I'm never without that, so I didn't feel the need to add it.) If your life is similar to ours, then stock up on these items. Self care is important, but we don't always have time for it. These save time, and will make you physically feel better.

Let's Talk About Impulse Control and Autism

Impulse control has always been an issue with my little man. Now that he's getting older, it's getting even harder to help him restrain himself from acting out on impulse. This causes many issues. Let's discuss some of these issues, then we will move on to more about Impulse Control, and some ways we as parents and relatives can try and help our children.

People see this as bad behavior.

    While I really don't care what people think of me, I do care what they think of my children. To the untrained eye, my autie acting out impulsively looks a lot look he's misbehaving. In all actuality, he just can't help himself.

Other people think that reprimanding my child is helping.

    Family, friends, even strangers whom think they are helping will often times try correcting the child. Don't. All you're going to do is cause more guilt for the child. Preaching to the child about what they've just done is only adding more guilt to something they had no control over in the first place. If you want to help, try redirecting the child, or distracting the child. (Ie: Susie grabbed the kitten even though she was asked not to. Don't yell at her. Don't preach to her. Simply tell her the kitten is off limits, and then gravitate her attention towards something else.)

Think before speaking

    This is especially an issue in our home. Our eldest son has moved back home for a bit, and he rarely thinks before he speaks. (Much like Liam, lol.) For example, Liam will be getting on his nerves and he'll say, "go ahead, hit me if it makes you feel better." He's saying it in jest, trying to make light of a tense situation. However, all Liam hears is, "go ahead, hit me." He doesn't pick up on the social cues. He doesn't get the joke. Now Liam is swinging like a pro baseball player at his brother. Brother is angry, and Liam is upset because in his mind, he's doing what he was told. Now his brother, and often times his dad are yelling, because to them, Liam is acting out. It becomes monotonous having to break up conflicts like this. Conflicts that can be avoided if people just took more time to understand Autism and impulse controls. (I'm not saying my husband and son don't understand. They do. Hubby is always trying to keep the peace, and our eldest is out of practice as he's never lived here full time, so he's not completely up to par on our Autism world.)

Now that we've discussed some problems that arise from Impulse Control, let's talk about what it is. 

Impulse Control is the failure to resist an urge or temptation. Simply put, it's a thought that comes into one's mind, and the person then acts on it. There are five stages to impulse control. They are: 

Knowing the stages, what are some ways to help children learn from it, or even to help diminish the impulses?

Don't just focus on what the person did wrong, but also on what they should have done.

    So your child acted on impulse. Depending on what it was they acted on, you may or may not yell. It's okay, because NONE of us are perfect. That being said, try to remain calm. It's okay to tell the child what they did wrong, but make sure you also let them know what they should have done. Try to keep their attention. You don't have to force eye contact (trust me, they will zone out on you if you do,) but ask them questions to see if they understood what you said to them.

Work on listening skills

    This is HUGE in my home. If you are giving your child numerous instructions, they are only going to hear part of it, and start acting out that part. For example, if Liam has to clean his room, I have to say, "Pick up all your dirty clothes, then come back." After he does that, I will move on to the next directive. If you tell your child or the individual a few things at once, you are bogging down their brain. BREAK IT DOWN. I promise you, this works. I have been doing this for Liam for years, and he works so well when others do the same for him.

Repeat back

    Another great hint is to have the person repeat back what you asked them. That way you know they know what to do. This works great for when you want to expand on their directives. I do this when I give Liam two instructions. It helps him process more.

Practice waiting

   Yes, practice waiting. Waiting is especially hard for those on the spectrum. My son and I both hate to wait. (We're working on it.) A good way to practice is to use visuals. Find a symbol for wait, and then a reward symbol. Start out slow. Have them wait five minutes, or even two, quietly. Then they get the reward. (Whether it be stickers, screen time, whatever works.) Over time, you can expand the time. 

Make it a game

    Believe it or not, many childhood games are great ways to practice impulse control and waiting. Simon Says is perfect because the child has to wait on instructions from Simon, and is only supposed to do what Simon says. Follow the Leader, Red Light Green Light, and Duck Duck Goose, are all great games to practice impulse control.

Get the wiggles out

    Give them sensory input. A lot of sensory seekers lack impulse control because their bodies are always on the go. Giving these children appropriate sensory input will help keep their bodies in check, and may reduce some impulses. 

Work on emotions

    Teaching our children emotions helps as well. For example, acknowledging that some things cause anger is okay, but acting on that anger physically isn't. Talk about way to address that anger. Liam's BSC and us, are actively working on this with Liam as well. When he gets angry, all impulse control fails. Frustration is another one. Thinking of ways to help your child deal with frustration and giving them tools to use will help decrease frustration induced IC. 

In conclusion

    These are just some of the things that we are actively doing to help Liam control his impulses. What are some ways that have worked for you?

The System is Failing Our Children

How is it that the systems put in place to help or protect our children are actually failing them? 

    We live in Pennsylvania. Liam was diagnosed on the spectrum six years ago. (In the years following, many diagnoses would follow.) At that time, our state case worker suggested we file for SSDI. We have filed, been denied, appealed, been denied, on and off for those six years.

    This year when we went into our caseworker to review his benefits we were told to file again. We called the SSI office and asked for paperwork. In the meantime, I get this letter in the mail.

   Okay, so first of all, what in the heck is the DAP and why in God's name have I just now been informed of it? We've been battling the state for Liam's rights for SIX years. All this time the Disability Advocacy Program of Pa never once stepped in. Not once.

    Suddenly, here they are, telling me if I DON'T file for him that I AM IN VIOLATION. What about them? As you can see, they clearly state that "Liam is considered a person with Disabilities." Yet, year after year, case after case, this very state denies him.

    Now let that sink in.

    I would be in violation for not filing, but they aren't for denying? How does that work? So last night, I spent a couple more hours filling out the same forms, and booklets that I have done in the past. All for them to tell me he isn't "disabled enough."

    Okay. Then why can't he attend a traditional school? Why are you, the state of Pa, helping to pay for me to not work, in order to care for, and to school him myself? Why does his school have him in numerous therapies for Speech, OT, and PT. How can you deny the fact that NUMEROUS doctors have diagnosed him with so many conditions, three of which automatically qualify him for SSDI?

    Why is it that systems put in place to help our children, aren't. (Remember, we've been filing for six years, and just NOW we're being told there's an agency that helps with that.) Yet, the only help they have given is to tell me I could be in violation. Gee, thanks Pennsylvania!

    Our children fight so hard to find their place in this world. They fight to over come their obstacles, and to face their challenges. As parents, we help them with these battles. We also try our very best to make sure all of their needs are met. Yet, the systems put in place to help them, don't. Instead they fail them, and us as well.

   

   

We Don’t Walk on Sunshine We Walk on Eggshells

Let me preface this with a disclaimer.

Neither I, nor my son, his father, or any of our family are looking for pity. What we are looking for is to educate the masses that mental illness DOES affect children. It also affects their families.

Tomorrow is the Vernal Equinox. (By the time this posts, it will be passed the VE.) We’re already experiencing longer days. That alone throws many of us for a loop. Especially Autism families. For families like ours, it’s something more.

If you’ve followed us for any amount of time, you know that my son is Autistic. He also lives with Pediatric Bipolar Disorder. I’ve spoken written many times about his major depressive cycles. As a matter of fact, the big one is right around the corner. That’s what Spring brings to our family each year.

However, I don’t believe I’ve ever written about his manic cycles. At least not in depth, nor on this blog. Which brings me to why I’m sitting here writing tonight. At the moment, my son is quietly playing with his action figures. This is the longest I have seen him sit still in days.

If you’re familiar with Autism, you know many Autistics don’t tend to sit still for long. They stim too. My son does both, but when he’s in a Manic cycle, they’re more extreme. I used to tell people that while I loathe Bipolar Disorder, I would take a Manic Cycle over a depressive one any day of the week. That changed this weekend.

Until just yesterday, I have never noticed what an extreme Manic episode was. You see, when my son (and many others) are in (what I thought to be a) manic cycle, they’re uber happy. They tend to talk non-stop, whether it makes sense or not. They ramble on, going from one topic to the next, and rarely stop for air. (I’m not exaggerating.) When you add Autism into the mix, stimming is virtually non-stop as well. My son doesn’t sit still at all when he’s manic (hypomanic.) Sleep is nil. It lasts for a few days or so. Many would look at my son during this time and think of Autism and ADHD.  So as you can see, this would be preferable to watching your loved one so depressed that they can’t function. As I recently learned, this in fact tends to be more of a hypomanic cycle.

Until yesterday I have only ever seen my son in a hypomanic cycle. I had yet to witness full blown mania. Without going into specifics and embarrassing my son, let me explain it in a way that I can still protect his privacy.

My son went from the above “symptoms,” to a grandiose version of them. Then suddenly, he snapped. Something so little, so trivial, sent him over the edge. I’ve seen my son have so many meltdowns, that they really don’t even phase me anymore, but this, this was different. Writing this right now is making me sick, but this, this was terrifying.

I don’t think I’ll ever forget the look in his eyes. His face read rage, fear, and utter lack of any idea of what was happening. Liam’s father wasn’t here. It was just him, my older (step) son, and myself.

This outburst (for lack of a better term) was directed at his brother. I was reprimanding Liam for something, and he saw his brother smile. That was it. That was all it took. He was on him like a feral dog on his first meal in weeks. Before my mind could fully process what was happening, I jumped up and yanked him off his brother, put him on the floor, and applied some of my weight for pressure.

He was screaming, but in just a few moments I saw MY SON come back to me. (You see, THAT wasn’t my son.) His body hitched with tears and I let him up. He ran into the kitchen and hid in a corner.

It took a bit for me to calm him down. I did what I always do after he has a meltdown. I let him tell me what he needs. (Which happened to be some squeezing and singing.) He kept repeating that it wasn’t his fault. That WE are bad and made him angry. That isn’t my boy. My boy always owns up to his actions. He always tells on himself if he does something naughty. But last night…. last night he blamed us. After that, he went straight into self loathing.

He kept repeating that he was “bad,” and “no good.” When he was more calm, I offered him a drink, “I can’t have a drink because I don’t deserve to drink.” My heart was breaking. I kept reassuring him that he wasn’t any of those things. My older son just sat on the couch, completely dumbfounded and shocked at what happened in a split second.

We both talked to him about it. We told Liam that we understand HE wasn’t in control. That he wasn’t in trouble, BUT that he HAD to try his very best to be in control. He went back to being hyper, stimmy, and talking.

A few hours later it happened again. This time because they were having a Nerf war, and his brother hit him with a dart. Within thirty minutes the whole situation was better. My husband came home. The only way he knew something horrible has happened was the looks on mine and our older son’s face. Liam was just playing and being Liam.

When Liam left the room I cried. I bawled and tried to explain what happened to my husband. Snot and tears were flying. I’ve rarely seen a clueless and helpless look on his face, but last night, that’s all he wore. Today we all have walked on eggshells. For fear of another manic outburst, or him delving to the bottom of a depressive cycle.

I know many may read this and think, “you’re the parents, you’re in control, not him!” The truth is, NONE of us are. Right now, Bipolar Disorder is in control.

So, tomorrow morning we’re putting in a crisis call to his doctor. We need to make a plan. We need to find new ways to help our son, because he, and us, do NOT deserve to live like this.

Edited to add: As of today he is doing much better. An appointment has been made with an emergency plan if need be.

If He Doesn't Care, Then Why Do I?

  It's a gorgeous spring day here in Northeastern Pa. I stand in my kitchen, in front of the window, preparing
baked potatoes for dinner. I gaze out of the window in a bit of a daze. The time change is still wreaking havoc
on mine and Liam's sleep schedule.

  I see all the neighborhood kid outside playing. Smiling. Yelling. Laughing. Playing together and having a
blast. My heart sinks. My son isn't outside having fun. He hasn't been asked to take part in the games being
played. He sits in the other room, on his computer. Googling and reading about edible and non edible
plants.

  I feel my eyes begin to swell with tears, and I move my work further down the counter. This way, I can't stare
out  the window. In that moment, rational thought takes hold. Liam is happy. He is doing something he likes, and
he's having fun. He's also learning, and it's not forced learning. 

                                So why am I so sad?

  I enjoy time to myself. I would much rather be alone, with a good book or creating something, than to be outside
with a bunch of people, wondering when I should speak, or fearing I may cut someone off unintentionally. I think
that sometimes, as parents, we see what all the other kids are doing, and we long for our children to be taking
part in that too. That doesn't always make them happy.

  Yes, there are times when Liam longs to be included, and that is truly heart breaking. But in moments like these,
when he is perfectly happy being himself, and doing his own thing, why do I long for him to be included, where he
doesn't care to be?

  Sometimes I think that we need to step back. We need to assess the situation, and we need to think.
Is our child happy? Does he/she care that they are alone? Why do I care? If my child doesn't care, then neither
should I.

  So I asked him if he wanted to go outside and play. His answer? "No mama! I'm learning about plants here!"

  Matter of fact, just yesterday as we came into the neighborhood on our way home from town, there were kids playing outside. Liam commented nonchalantly, "Now that all these kids don't like me, or are mad at me, they don't ask me to play. But that's okay. I don't have to worry about anybody bein' mean to me."


  From the mouths of babes folks. Sometimes, the best advice comes from the mouths of babes.