Our Homeschooling Approach

When people find out we’ve elected to homeschool our children they either have no opinion or too much of an opinion for someone who’s not their parent. I find people are resistant to it without understanding it, have preconceived notions, or are so old school they don’t realize it’s possible for there to be more than one way to educate a child. I find all of the above frustrating and I don’t speak a whole lot about it to avoid frustration, thus would rather maintain a “we’re gonna keep on trucking” whether people realize it or not kind of approach.

I am not anti-school. I refer to school and recommend it for a lot of children I come into contact with. We have simply decided after extensive thought, consideration, and due diligence, that homeschooling is simply what is best for our family and mainly- what’s best for Caleb’s needs. Yes, we have official home school status granted to us by our county school board.  I have plans and data and explanation for everything we do everyday we do it. Yes, my children can still be properly socialized and yeah maybe they won’t go to prom or play high school football but I believe every parent gets to make choices for the opportunities they want to prioritize their children to have access to. Ours just may be different than traditional high school experiences. But that’s ok with us. And yes, they can get diplomas and into college and have careers despite being home-schooled.

Things that have had to be considered for us to be confident in taking on such a major responsibility include (but certainly aren’t limited to) the following:

  • A system. One that works for us. Not an educational one yet, but rather, an approach. That means defined roles and responsibilities between myself and my husband, a defined “where”, a schedule of when it happens, a plan for making up content when it can’t, and plans for carryover between the both of us.
  • Cost. Homeschooling isn’t necessarily cheap. I buy the same instructional materials schools and teachers provide and office supplies such as a quality printer, personal laminating machine, etc. for making materials. I also pay for online subscriptions to access materials as well.
  • Time. That’s the biggest one but one that has been achievable to date because going back to the first point, we established a system. As my kids get older, content will require more time, and there is a plan for that as well. (Also factor in “future planning” as a point of consideration for home schooling!).
  • Self Awareness. This. Is. Huge. We were at an advantage because before we ever considered having children much less homeschooling them (fun fact: it wasn’t always our intention) I happened to acquire a couple degrees and real world applicable experience making me very well versed in typical/atypical child development across the content spectrum and how to work with children who need my help learning. This was a fluke in the universe that worked out to my advantage. This doesn’t mean that only people with a comparable background can successfully homeschool their child. Not at all. If you’re willing to commit the time and energy into learning and understanding both typical and atypical development, anyone can help educate their child. If though, you aren’t willing to commit the time or energy, aren’t willing to spend time researching and troubleshooting, or don’t find yourself with the patience to take on the role as your child’s educator, the ability to realize that, self monitor it, and make an alternate plan accordingly is invaluable. To everyone.
  • Protection. We were not met with opposition when we sought out to acquire full exemption to homeschool our kids. We were, however, prepared in case we needed it as my husband and I (as well as all current or future children of ours) acquired a lifetime membership to a national homeschool defense league that will advocate for and provide legal representation to us if we ever needed it. If we don’t, it’s still worth the peace of mind knowing we have access to advocates and they are also plentiful in resources for parents as well.

Currently, I do not use an assigned and preset-premade curriculum for our Kindergarten and Preschool pursuits. We will, one day, but right now, I am not satisfied with current systems enough to invest the money into knowing I’m going to have to make extensive accommodations to meet the current needs of my Kindergarten aged child. I am close to purchasing a literacy instructional program I’m a fan of but am using our first semester now to solidify more of Caleb’s pre-literacy and phonological awareness gaps. Teaching a nonverbal/preverbal/limited verbal/verbal but not intelligible (he’s a combination of all of those things at any given moment) child to read is 100% achievable, however, takes considerable time and alternative approaches. That’s a post for another day 🙂 We also bought and utilize Handwriting Without Tears for writing work. Since I generate my own plans here is what they are based on:

  • What is DEVELOPMENTALLY appropriate for my child? I do not target things that norms say he’s supposed to do as a 5 year old if there are still things he’s not doing that is expected for a 3 year old. We will do those, then the 4 year old norms, then the 5 year old ones. If I expected him to target things based on his chronological versus language age I am setting him up to fail. There are quite literal and developmental consequences, for example, for learning to walk without ever crawling.
  • What is FUNCTIONAL? For Caleb and for our family as a functioning unit. Knowing the capitals of all the states but not knowing how to communicate feelings or physical states of pain would mean I’m teaching him arbitrary content that isn’t at all functional. There has to be a happy medium at which knowing “facts” and being a functional human meet which is what I try to do with my planning.

Here are the content areas we cover and the order of important/emphasis I put on them:

  • Reading
  • Writing
  • Math
  • Speech Therapy: Caleb has both ASD and severe apraxia of speech. We do 3 days a week dedicated to speech based therapy to address the motor planning part of his apraxia and 2 days a week formally addressing his mixed expressive-receptive language delay. Language is largely also addressed in other content areas and in normal daily routines. Our pragmatic (or social skills) as well.
  • Occupational Therapy: Caleb does not receive formal OT. In the world of developmental pediatrics, ST and OT go together like peanut butter and jelly. You can not consistently provide quality ST if you are not meeting the sensory integration needs being addressed by OT. In some severe instances, I can’t address communication at all until OT gets in the picture to help little engines get regulated. I currently find myself capable of meeting Caleb’s OT needs. That does not mean I think of myself so highly to think I can call myself an OT, that I know all the things an OT knows, or that I’m too stubborn to ask for help. Quite the contrary, actually because I also know enough to know at what point I can no longer help Caleb myself with those needs and he will need to see someone else for them. Right now, in OT scope of practice, he has sensory and executive functioning needs which I feel I can address. When I can’t, I happen to be spoiled by having OT’s as best friends and they will help him instead.
  • Science/Social Studies
  • Creative Arts
  • Self-Care/Behavior/Social Skills
  • We do Gross Motor work on the weekends.

Before we started our school plans I researched and made a list of typical norms for 3-5 year olds across the following content areas: Self Care/Organization, Fine Motor (this includes Writing), Gross Motor, Creative Arts, Phonological Awareness and Literacy, Articulation, Social Studies, Expressive/Receptive Language, Play and Social Skills, Math, and Science. Then I went through and prioritized which targets from each of those categories met my current criterion for what’s functional and what’s developmentally appropriate. That’s where our weekly plans come from. Now that we’ve gotten back into our flow from our more lax summer schedule (we never fully stop but we do take a hot minute to breathe) we’ll resume weeklyish field trips after Labor Day as well. That’s when we take advantage of museums, festivals, play facilities, etc. If I can get there in under 2 hours, it’s on our list of considerations for places to go. Sometime though, it may just be a life event we plant for. On weekends we have scheduled field trips or an event to attend, I might make the plans follow the same structure but with a “theme” to accommodate vocabulary or social/safety information for what we plan on doing/where we plan on going.

After each lesson, I note take and trouble shoot how we can improve and what accommodations we need. They generally involve the need for visuals either for content or behavior I didn’t predict, a sensory accommodation, or an environmental change to make.

It takes a lot of work and a lot of time. And sometimes I psych myself out a little and feel worried about being “enough” because I know the stakes are high. There’s never been a moment though, that I felt like I wasn’t making the right choice. And whatever educational option leaves parents feeling “I know this is the right thing” is what I feel 100% they should pursue no matter what that setting is. I like teaching Caleb. Caleb likes learning. For now, he’s comfortable learning from me. We make a good team 🙂

 

Love and Autism

Erin

 

Carry on Wayward Son

Sometimes special needs parenting hits you in the face, hard. I took both kids to my 3-year-old daughter’s well check today. It was a little stressful when Caleb went for the stickers laying an inch away from the uncapped syringes, but otherwise an excellent outing with both kids. This is a rare feat in our household as we almost never take both kids into a place with one adult. I thought, “I got this” and took the kids to a nearby Chik-Fil-A as a treat for them doing so well at the Doc’s.

I was cocky.

We were 8 minutes too early for lunch. Caleb started crying. The obviously childless teenager politely asked, “Are you sure you can’t wait 8 minutes?” I point to my now screaming autistic 5 year-old while letting the cashier know that I have no problem waiting but my son clearly cannot. As we’re walking away, the manager calls out that they can make nuggets if we don’t mind eating hash browns instead of fries. I thought that at least Caleb could get his nuggets and the worst would be over, so I took them up on it.

I chose poorly.

While I was trying to order his kid’s meal, Caleb erupted into a meltdown that will surely go down into the record books. There was screaming, crying, and flailing. I felt the eyes of every person in that place burning into the back of my neck as I tried to console him while finishing the order. It was so bad that the manager came running around the counter and dropped down next to my daughter to try entertain her and allow me to focus on Caleb.

At that point I felt we were in too deep to leave, somehow managed to pull out and swipe my card, and then the manager grabs the food tray and asks where we are sitting. I pull/drag/carry my screaming Caleb to the furthest booth in the very back of the restaurant, open his nuggets, and hand them to him. Like a light switch, Caleb bursts out in a grin and sits contentedly eating nuggets while looking around smiling. Manager looks around to see if she’s on Candid Camera. I explain that leaving was trigger that set him off because he can’t handle when a set routine is broken. It’s especially brutal if it involves his favorite foods. He gets this from his mother. Also, a major shout-out to that manager who really stepped up and went above and beyond.

As we are leaving, all the employees smiled at me and told me they were sorry. I feel like this should be reversed, but whatever we’re almost done. Five feet from the door, my until-then perfectly behaved daughter notices the ball pit and starts screaming/crying because her mother always takes her. Mother strikes again and she’s not even with us. We’re moving and the door is in sight, so it’s just a little salt in the wound. I get the kids into the car and book it home.

On the drive back, Carry on Wayward Son by Kansas came on the radio. It was rather fitting and made me reflect… minus the whole lay your weary head to rest part. Caleb has his own road to travel through life. It’s not well-beaten and it’s going to be difficult, but it’s his road to travel. I already know that at times I’m not going to understand it, but that’s okay as long as I can be there to help him down it.

So carry on my wayward Son, don’t you cry no more.

Brian Samsell

The Tough Stuff

My husband and I rarely travel anywhere at the same time without our children. Especially overnight for multiple nights. As a matter of fact I think it only happened one time 3 years ago and that’s because I needed Neurosurgery. As I recall though, I think I was forcing my husband to stay behind even then because Caleb was 18 months old and Ari was 6 weeks and I thought I would feel better knowing they were with daddy and didn’t change my mind until a few days before. It’s not something I’m comfortable with so I just don’t make a habit of it.

What happens when you’re a parent and you and your spouse leave your children at the same time is that you have to make a formal and legally binding contingency plan for the worst case scenario. We updated that document the week we left town and it creates a pit in my stomach everytime I review the fact that in the most awful of scenarios, they would need legal guardians.

In all honesty, I don’t worry about Ari. She has a mixed language delay but ultimately, when she’s landed where she’s going to land, she’s going to be ok in the world. I live, however, in a constant state of worry about Caleb. It’s not because he doesn’t have an excellent prognosis or that he isn’t making incredible gains. The road is long. The days feel even longer. I know what he needs and how to fulfill those needs because before I ever knew I’d end up being Caleb’s mom, I happened to pick a college major and get a couple of degrees and a decade’s worth of experience doing the exact thing he ended up needing in the world. But what happens if I’m gone?

I can’t say it out loud. I cry when I type it but physically I can’t say the words out loud. Because do you know what can’t happen? He can’t live in a home. He can’t not have his voice heard. He can’t have his stims suppressed. He needs to be around typical peers and screech and talk and flap and hold things 2 centimeters from his eyes and he needs to be with people who understand those things are the same as eating and breathing for a kid with Autism. I don’t come from a family of pediatric speech and occupational therapists. So that means I make a lot of contingency plans and “just in case” documents and hope that if nothing else, being under the care of people who love and “get” him will ultimately be what carries him farther in life than anything else.

I don’t know what happens to Caleb in a world where I’m not his person. I do know, though, that if it isn’t me, there’s a whole tribe of people who will love and advocate and speak up for him on my behalf. And that’s never anything to be sad about.

Love and Autism,

Erin

We’re here, we’re here!

“Take That, Autism where did you go?!”

We’re here. We never left. In the waxing and waning of parenthood where “I’ve got this” quickly turns to “What day is it?” in the amount of time it takes a Lego to lodge in your big toe, we lost track of some things around here.

We overbooked, over expected, drowned a little, came back up for air, and are trying to find our footing again. That will involve some re-organizing, consistent planning, saying “no” more, and continued consumption of caffeine.

One thing that never stopped here was Autism. Just because I wasn’t writing doesn’t mean I wasn’t feeling. I may not have been shouting about Autism from the rooftops but I at least was talking about it in a moderate volume on my back patio.

Caleb turned 5 a couple of weeks ago. That’s a whole hand, ya’ll. We had a super fun and the biggest party we’ve ever hosted here on the farm for him. There were other kids here for a party for the first time. It was space themed (because this kid is not your typical train loving boy with Autism but does love a rocketship!) and I absolutely- in more ways than one- rocked his world. “Oh hey man, here’s almost a dozen kids who are gonna come play with all your things in your personal space and we’re gonna be cool with that, ok?” And he most certainly was 🙂 He wasn’t the most outwardly social and didn’t seek any kids out but when they would come find him and swim by him in the pool he had the biggest smile on his face I’ve ever seen. And you guys- he exhibited some 100% compliant cooperative play with a friend with not just a preferred toy but an item of Autism compulsion- his Lego sets. There were no tantrums, no meltdowns, and not very much sensory seeking. But there were laughs and smiles and words. Lots of words. I got reports of how much he’s grown developmentally (and physically cause you know- 98th percentile for height) from family members who only see him a few times a year. Caleb convinced a party goer who didn’t plan on swimming to go change into a bathing suit by making sweet eye contact and verbally requesting that they “swim” with him. And I’m 100% certain he knew everything and everyone about that day was for him.

It was an amazing day and I’m excited because I think 5-6 is going to be huge for him. I wouldn’t be honest, however, if I didn’t also include that there are bittersweet aspects to our special needs children growing older. While I make a big deal out of his birthday annually because I’m so incredibly proud of his progress year to year, the older he gets, the wider the gap becomes of things he can’t do yet. He’s talking a lot but still largely nonverbal. He likes other kids but doesn’t seek them out. He plays with all the toys he got as presents but still lines them up in rows. I bought a pack of size 6 diapers today. That stung. He’s doing better but he’s not 100% there yet with potty training. At 5 you can’t hide that there’s something different about him when we go out. Which I don’t try to do and I do have a genuine “screw ‘em” philosophy to any wry glances or judgmental stares received when we’re out. I do fear, however, that because his differences are more noticeable, that there’s gonna be that one fool who says the wrong thing just audible enough for me to hear and what in turn my reaction will be. You can ask me questions- blunt ones- I don’t mind. But you can’t criticize him or even elude to criticism with him in my presence because I have a hypersensitivity to protect him like you wouldn’t even imagine and I CAN’T handle it. I admit 100% the severity of my responses have not always matched things that have happened and you may say “oh, that’s a mom thing.” It is. But when it’s about your child with special needs it’s more of a “mom on steroids after 37 Red Bulls and an all nighter at an accidental rave” thing. The poking of the Mama Bear of a special needs child is a whole other post (stay tuned!).

So, I’m excited for Caleb’s 5th year. Also obviously, I’m slightly worried I may have to punch somebody in the face before he reaches 6 but we’re all a work in progress, are we not? 😉

Fellow Autism mamas- may your child’s birthdays ALWAYS be more sweet than bitter. 

Love and Autism,

Erin

PS, for fun, and so I can do the same things my Facebook friends post on an annual basis, here’s one of those fun birthday questionnaires about Caleb. He’s not able to answer the questions himself this year, but I’m confident this is what he would say if he could!

Caleb, Age 5

Favorite Toy: Legos

Favorite Outfit: Astronaut t-shirt and Mickey Mouse pj pants

Favorite TV Show: YouTube Surprise Eggs (ya’ll know what I’m talking ‘bout)

Favorite Movie: Lego Batman

Favorite Food: Mac and Cheese

Favorite Song: Rain, rain go away

Favorite Book: PJ Masks Look and Find

Favorite Holiday: Halloween

What do you want to be when you grow up? Astronaut. Or YouTube millionaire surprise eggs opener 😉

Finding Joy in the Journey

It’s an honor to host my friend Crystal as a guest blogger today on behalf of the amazing company I work for, BPT Kidz! Please read the story she wrote for us on how she turned fear into perseverance and even managed to find joy in the journey following her son’s diagnosis of Autism. Thank you, Crystal, for helping us help other families find their joy, too.

“I was not a new mom. My daughter was 10 years old when my son, Weston, came into the world. I was
not a new mom, but after my son turned one, I found myself in unknown territory. As a mom of a
child who met all milestones appropriately, was healthy, happy and still alive — I thought I was rocking
this mom gig! So, when my son was not meeting milestones appropriately I questioned myself. Was I not
working with him enough? Was he getting enough one-on-one time that was educational? Was I slacking?
I figured this was probably the answer. You see, I was in my early 30’s when my son came into this world-
not old but definitely not young either. I noticed things but listened to family and friends when they said
“He’s a boy,” “Boys are different from girls,” or  “He looks and acts fine.”  “You’re just looking for
something!” At this point I should mention that I work in an ER. So my friends are respected, educated
professionals, whose opinions I value. In my job I see and learn a lot- but I realized a long time ago that I
only know a little about a lot. Mostly, it’s just enough to scare the hell out of myself. But when enough
people tell you that it’s all in your head (no one actually said these words but-it was implied) you start to
believe it. They meant no harm they just didn’t want me to worry because they love us both.
But they were doing harm-regardless of their intentions. I didn’t realize it then but I needed someone to
see what I was seeing. I needed someone to say “It’s not in your head, we see it and it’s nothing to worry
about.” Or at least I thought this was what I needed. So at my son’s 15 month check-up I told his
pediatrician of my concerns. In detail. This was the first time I heard the word Autism. She quickly
followed it with “but he’s so young, they typically don’t like to test or diagnose at this young of an age.” So
as I left the office that morning, I cried all the way home. I convinced myself that she wasn’t really
concerned with my son having Autism, she was just trying to give a VERY persistent parent an
explanation about certain questions that couldn’t yet be explained.
Let’s face it….. I am that parent. That parent that wants or needs a definitive answer. A “let’s watch and see
approach” is not the parent I am. I wanted an answer. I wanted that answer to be “YOU’RE not working
hard enough. YOU’RE not investing enough time!” It may seem strange that this is what I wanted to hear,
but I already know that I’M flawed. I already know that I slack at times. I yell, cuss occasionally, cry, and
get wrapped up in life and my other child. I let him go to bed with a Sippy cup of milk (huge no-no),
sometimes forget to make him brush his teeth twice a day, forget and let him play outside without
sunscreen, etc. This list could go on and on. But the problem HAD to be ME! It just had to be. Had to be
due to my short comings because he was ABSOLUTELY AMAZING! The fact that he couldn’t say
“mama” but could say “elephant” clearly suggested that I was too attentive. He didn’t or wouldn’t say my
name because I was a helicopter parent. I hovered so he didn’t need to say my name. Yes, I was actually
told this too by family and friends. This made more sense than the possibility that there was something
wrong with HIM. This also accounted for the reason he still spoke baby gibberish and pointed to stuff
instead of actually asking for it with words. I was meeting his needs before he had to ask.
So, instead of a specialist appointment I asked for a referral for speech therapy. I put him to bed that
night and researched Autism. Signs, symptoms, causes. If you’re like me and have done this too, then
you know my frustrations. No definitive causes or at least not to date. Signs and symptoms all vary. So I
went through list after list until I found more symptoms that he DID NOT meet verses the ones he DID.
This let me feel a small bit of relief. You see, by choosing to not have him evaluated sooner I already
knew that I was doing him a disservice. This wasn’t for him, although I justified that it was. It was for
my own selfish reasons. I was scared. Scared of the right here-right now. Scared of the unknown. Scared of
not ever knowing or understanding. Scared of an uncertain future. Scared that I wouldn’t know how to
help him and that would make me an even worse parent. But I promised him after his 15 month checkup
that everything would be okay and by God it would! So we were interviewed by PCS for speech needs.
A lady came to the house and evaluated him and said he was fine. She saw no red flags for Autism. She
didn’t see a need for speech therapy either. His word bank was on target although they weren’t the
typical first words, they were his. Again, another breath of relief. But this relief didn’t last long. That
mother’s instinct kept telling me to not sit on this. To not find comfort in this slice of good news because
I knew that I was trying to soothe my own beat-up ego.
We started speech therapy with a very nice gentleman named Jim. Imagine my mama heart break when
my son starts to say his name before mine! I have always rejoiced in my child’s victories no matter how small and I rejoiced this time too, but this one hurt to the core! On our very first visit Jim stated that my
child has Echolalia. Another first for me. I only knew that he continuously repeated things and didn’t
seem to understand things, like questions. Example: “What did you do today?” He would reply “What
did you do today?” I had no idea what a speech pathologist does. As stupid as it sounds now, I just
thought they taught him words. Which was just another reason to beat myself up….. I couldn’t even teach
my son to talk, I thought. Boy was I wrong- about everything. Jim casually mentioned getting an
evaluation, which I shut down immediately. I had already come to terms with it being my fault.
Undeterred, Jim continued to work with my child and after 12 visits (all his insurance would allow at the
time) we needed another referral. Jim also decided it was time to retire so now I was back at ground zero.
Jim was helpful though. He taught my son various tongue movements/exercises that would make
different sounds to use to make new words. He used play and pictures for my child. He taught me that
Weston would respond to softer voices before loud or screaming because he blocked those out. We also
discussed the benefits of pre-school. By this time my son was almost 3. So, I started looking into pre
schools. My son needed social skills that being with mom all day everyday couldn’t offer. I thought that
he would pick up from other kids and compete (in a sense) with other kids for the teacher’s attention. I
found a great pre-school where he could go just in the mornings and they had a speech therapist who
came in and worked with the children. So we started pre-school.
This is where we met our favorite speech pathologist/friend/person/neighbor. She has saved us. She is all
these things and so much more. She started working with Weston immediately. His teachers always gave
good reports. He was not disruptive during class but he was easily distracted. I didn’t realize it then but
Erin knew from Weston’s very first interaction with her that he was on the spectrum. She gently
suggested an evaluation too but again I shot it down. I didn’t know her well enough to trust her judgment
and I didn’t think that she knew my son well enough yet either. This may seem crazy but I just knew that
once she spent enough time with him she would see him for the true perfection that he is. Needless to say,
I didn’t make things easy for her. She still persevered- for him. Erin also suggested that Weston may
benefit from Occupational therapy as well. I followed these recommendations because— we were
building trust, right? Not to mention, my son was taking leaps in his speech that even my layman’s brain
could obviously see. We met his OT, Krystal, when he was around 3 and a half years old. And yes, I was just as
hard headed with her. But she too, stuck with my child. As it turns out, they DID see how perfect he was.
They also saw just how much he needed them, even when I didn’t. So now he was getting both speech
and occupational therapy. After his evaluation for OT, true to form, Krystal suggested an eval too. Well, if you’ve read all this then you know how well that went over. I wasn’t impressed with a label and honestly, it still scared the hell out of me. In my mind I didn’t understand why if we were getting all of his needs met without it, why was it so important?
These lovely ladies never pushed me, never demanded. They just taught me, too. I recently pointed out
to Erin that I now know, that she knew from the very first interaction with my child that he was on the
spectrum. When asked why she didn’t shake me or scream at me to understand….. In true Erin fashion,
she calmly replied “because you weren’t ready, mama.” Boy! Is she awesome or what!
So a year and half go by and now it’s time to decide on schools for kindergarten. Now it’s time for a
reality check. Is my son ready for public schools? You see after spending a year and half with these
amazing women, I realize all the work they do. All the help my son needs. I now know that he has poor
short term memory. So now when asked “What did you do today?” he will only answer with the things
that stand out the most. He’s not repeating me anymore but he still cannot respond in detail about his
day. He needs 8 seconds or more of processing time. So he cannot respond as quickly as your typical 5
year old can. He can’t be still and is easily distracted by things as simple as the hum of the light bulbs. I
realized though, it was finally time. TIME FOR AN EVALUATION. In order to get the
accommodations we needed for him to be successful in school, he was going to need a diagnosis.

Here we go back to his pediatrician and asked for a referral. On that day-the day of my child’s 5 year
check-up, his Dr. diagnosed him with Autism, ADHD and Sensory Delays. This time I sat quietly. You
see, that’s when you know that the professionals you’ve entrusted your child’s life with are amazing. She
knew all along too….like Erin, she was just waiting for me to get there. I sat silently by as my cheeks
became wet and I had a very humbling experience and an EPIPHANY! THIS was not due to my short comings as a mother nor my fault! I had done everything that I knew to do and everything I had been told to do. This was no one’s
fault.There was no fault to be placed because there was no fault at all! It just was. My God doesn’t make
mistakes! Although, I question myself constantly, my God saw fit that I raise this beautiful intelligent
spit-fire blessing-who was made PERFECTLY!
When we returned to therapy the following day after receiving the diagnosis I was overwhelmed with
the love of his therapists. Our people. Our village. They understood my anger. My resistance. My need
for knowledge. Our needs. They just get it. I have no idea where we would be without them. I shudder to
think. I was so scared. Not so much anymore. Not because I finally know all the answers but because we
have-THEM…our people. They have been there for me too….and he’s the one they signed on for.
God designed our paths a long time ago to cross. Since the diagnosis I have had a roller coaster ride of
emotions. I still question things-some that make sense, some that don’t. Like, maybe if I had taken my
prenatal vitamins longer while nursing for those 14 months or maybe the immunizations caused it, etc.
Acceptance doesn’t mean you just stop moving because you’ve reached it. I’ve finally, 3 and a half years after
starting this journey feel I’ve reached acceptance. But you don’t or can’t linger here. I still ask questions. I
still have to work extra hard to understand. We have almost completed kindergarten. My sweet
affectionate boy is reading and writing! He went to a public pre-school for 2 years and came out with a
few war wounds but still wasn’t able to recognize his ABC’s. He was doing what they asked of him but had no idea what he was doing. It took me accepting that he needed more. Recognizing that traditional public school and experiences may not be what HE needs and then researching my options. Now with the help of “my village,” my child is excelling.
I still cry for the unknown future Weston holds. The chances that he’ll never have like joining the
military…. I know as a mom you really don’t like that idea either, but I’ve told my kids they can be
ANYTHING they set their minds to. SO to have an option- any option-taken the moment that diagnosis
was put in his chart is yet another reminder of how unfair it all is. I worry about him being in an unfair
world without me in it to “Mama Bear” and defend him-no matter how old he is. I worry about him being
pulled over by police and not being able to respond quickly enough for them to feel like he’s not a threat
due to his processing needs. My point, even with acceptance still comes concerns and questions. That’s
why awareness is so important. Everyone should be aware. It’s scary and it’s confusing….but it’s worth it.
Chances are you already know someone on the spectrum. They may not even know they are. But practice
a little compassion and understanding with everyone and you’ll never have to question how you treated
anyone-ever.”

Crystal Keffer

When Everyday is Autism Day

Tomorrow, April 2nd, is World Autism Day. It’s a day dedicated to the recognition of what Autism is, how we can help others know more about it, and ultimately how those things can lead to acceptance of individuals with Autism. April is also Autism Awareness Month, so, theoretically, there should be lots of opportunities to share and educate about Autism.

I have no problem with Awareness days and campaigns. I appreciate and support them because I work with lots of people they pertain to. I think it’s important to acknowledge what other individuals with different circumstances are doing in the world, how we can advance research for these causes, and most importantly, how to educate people to not be ignorant about what they don’t know they don’t know. If it takes a particular day being dedicated to something to get people’s attention to do that, that’s fine by me. So today, and the next 28 days, are that for my son. A chance for people to increase their awareness, education, and acceptance of him.

But for our family, it’s different. April’s clock will tick out and it will be May 1st and guess what? It’s still going to be Autism Day. Because EVERY day is Autism day here.

Like I said, I appreciate awareness days. I am a proponent of education, awareness, and acceptance. But do you want to know where my frustration begins? When there is no “action” that follows all of those other campaign friendly words tied up in their neat little bows.

Tomorrow, I ask something of you. Don’t make a post saying “It’s Autism Day!”. That’s just words. It’s likely with the current statistics for ASD incidence rates that you know someone with Autism. Your blue filter on your profile picture in honor of my kid doesn’t mean anything to me. I appreciate very much the spirit in which it is meant, but what have you actually done when you filter or frame or just type out the word “Autism”?

Don’t worry- I don’t complain without offering up an alternative action plan 😉 Here are some thoughts on how you can make families who live Autism Day everyday feel a little more recognized, appreciated, and accepted 🙂

  1. Tell somebody what they’re doing well. Insider’s secret: However confidently we pick a screaming, sprawling child up off of a museum floor to carry onto the next exhibit, sometimes, inside- we die a little each time. It’s not so much that we care what people think, but we have a split second to strategize how we can rebound before hitting the meltdown point of no return and it’s stressful as all get out until we get there. It takes a lot of physical preparation and mental energy to get back out there and keep doing it time and time again but we do, because guess what? The day we don’t reach into the touch tank at the aquarium and body slam a starfish onto the rocks is going to feel amazing. I find, personally, this is where I feel the most lacking as a parent. I am my son’s therapist and his mother. I make his education plans, his therapeutic interventions, and I parent him. Today, it works for us, so we’ll keep moving forward like this until one day it doesn’t. But that also means that if I want cheerleading, I need to break my own pom poms out. So please, friends- it will mean so much more to a mama if you cheer them on instead of changing your profile picture.
  2. Ask how you can better interact with their child. Caleb has a lot of people in his life who have learned a lot over the last couple of years and do a great job with him, and there are others still that don’t get it and don’t seem to want to. I’ve talked before how the first person my husband ever met with Autism was his son. He’s learned so much and does so well with him and educates others on how to appropriately interact with him that it makes my wife, mama, and pediatric therapist heart burst with pride. This past Friday Caleb stayed with a babysitter before Brian went out of town and the babysitter redirected him to not do something but Brian explained to her how it was ok because it was a proprioceptive sensory seeking behavior. And that to me, is far more romantic than a bouquet of roses. Sometimes kids with Autism don’t always play in a typical way. Instead of watching them from the sidelines, ask how you can change how you interact with them versus waiting for them to change how they’re playing. Social skills are hard- ask how you can help facilitate eye contact or conversation- just don’t ignore people. I don’t want my son completely pulled from his world into into ours. I want to live in the peaceful place where those worlds meet.
  3. Don’t assume. Don’t assume that being nonverbal is the same as not having something to say. Don’t assume behaviors originate from poor parenting versus compulsions or sensory seeking needs. Say “hi” to my son every time you see him, even if he doesn’t say “hi” back. Instead of thinking “wow, Caleb’s really having a hard time” think “what in the environment is difficult for him?”. Just don’t assume. Be a decent person about things.

Thanks for sticking around to read one mom’s thoughts on the importance of World Autism Day and how you can DO one small thing to make all the difference for someone else.

 

Love and Autism,

Erin

 

This Little Light of Mine

Things have been super quiet on this page because I feel like I’ve had about 0.3 seconds to breathe in the last month. I work a lot of the time. I’m Caleb and Ari’s mom ALL of the time. I haven’t been in town on the weekends and so suddenly it’s been like “Take That, what???” But here I am, back at it. Because I may have taken a blogging hiatus, but Autism never takes a break.

 I used to have this stance, regarding Caleb, that we don’t separate. If there was something going on that Caleb maybe wasn’t ready for or may find overwhelming, I didn’t send Ari with daddy while I stayed with Caleb. We all simply found something else to do together. I had a very Godfather mentality of “you never turn your back on the family” and the second that I allowed Ari to do something I wasn’t sure about for Caleb, I felt like I had turned my back on him. That it meant I didn’t believe in him. The one exception I made was weekly gymnastics class for Ari because she needed consistent exposure to typically developing peers. Other than that, every picture of every outing has both of my children in it. And because I feel it’s ridiculous to blog about something without being 100% transparent about it, I’ll admit I was probably a little self righteous about it and thought it’s how everyone else should roll too. Silly Erin.

Recently I found myself at a crossroads and took Ari to an event and left Caleb behind because I wasn’t sure how he’d do but wanted her to have the opportunity so I went back on my self imposed rule. But it took an hour long midnight conversation with my best friend held up in a hotel room on a momcation to get there. And then I was certain he was watching and crying from the dining room window as we left down the driveway. Ok, I thought. I did it this one time. Fluke, not a pattern. Then my husband approached me one night last week and asked what I thought about him taking Ari to a family event while Caleb stayed behind with me. Again, full disclosure, my knee jerk reaction was to tense up, furrow my brow, and purse my lips. I automatically felt defensive and had the need to justify all the things he’s doing awesome when it was brought up how this may not be the best fit for him. Also, I 100% agreed with my husband. I find though, that I have zero tolerance for speech that is critical of my son. Constructive? Sure. Tip or trick? Yes please. Criticism or negativity that serves no purpose? I will cut you and I will cut deeply. I acknowledge there should maybe be some self regulation there versus going from zero to “I’m coming at you swinging” but today, there’s not. Also, thinking out loud, we’ll talk about the protective nature of being a special needs parent being equivalent to a grizzly bear with roid rage another day.

Ultimately, I decided my husband’s request was reasonable and appropriate and he made super fun plans with Ari while I started making super fun plans with Caleb. Then I found myself on an interesting side of a phone call with him a couple of days later. It started with “I have some concerns about Caleb.” He proceeded to tell me that he wasn’t sure about taking Ari on a trip because it didn’t feel right to leave Caleb behind. And in fairness Caleb had graciously been invited and when Brian explained that he may make a scene it was simply met with “I don’t care, we’ll figure it out.” Still, both of them at once in the perfect storm can in fact be a bit much to handle. Overall, Brian felt his plans just didn’t feel fair to Caleb. And in a moment of logic and unprecedented self-clarity I don’t usually exhibit, I told my husband the following:

“In trying to be fair to Caleb you may find you’re actually being quite unfair to Ari.”

And just like that, we realized, that we have reached a point where there is now a significant gap between Ari and Caleb’s development and we have to give her opportunities that Caleb still needs more time to grow into. It doesn’t mean he won’t get there. It doesn’t mean he won’t have the same chances. Helping one shine doesn’t mean we’re putting out the light of the other.

Shine on, Ari. Shine bright, Caleb. The rest of the world is just gonna have to put on some shades.

Love and Autism,

Erin

Rain Rain Go Away

Caleb has been saying lots of things lately and a lot of it has been spontaneous- no model needed. Last night he was eating an ice cream sandwich and went into the kitchen, came back with a spoon and declared over and over (while making very awesome eye contact) “oon! oon! oon!”. And then he grabbed my arms and wrapped them around himself because he wanted a hug. He wanted a hug because he was proud of himself for saying a new word.

Last week his thing was “Rain rain go away”. He sang it along with the song and for connected speech with /r/ and a voiced consonant in a kid with a severe case of apraxia, it was surprisingly intelligible.

Every year for several years I’ve said “2015 is going to be his year. He’ll find his words.” Which became “2016 is it! This is the year we’ll develop speech!” And then “Ok….2017. 2017 is definitely his year.” Here we are in 2018. He’ll be 5 this year. And that makes me feel funny….5 seems so official. He won’t be a toddler anymore…he’ll be his own official little person. A legit kid. How I would love for him to be able to tell me what he thinks about that.

I am not only Caleb’s mother, but also a pediatric speech pathologist. I firmly believe that you do not have to be able to say words in order to find your voice. I do not just say that because it’s a lovely cliche that gives people comfort or makes them feel better at night. It’s the truth. I love AAC. I believe in total communication. I prescribe it in my office and practice it in my home. But do you know what else? I’d love to hear my almost school aged son tell me- with the voice he was born with from the vocal folds he developed while he was in my belly- that he loves me. And it’s ok to accept all the other stuff but want that at the same time too.

I know a lot about Caleb. He doesn’t have to tell me….he doesn’t even have to show me on AAC or with pictures. I know his favorite PJ Mask is Cat Boy, that he likes waffles better than pancakes, writing is his favorite thing we work on together, his favorite dinosaur is Triceratops, and that if he knew what it meant when I asked, he’d want to be an astronaut who rides in a rocket when he grows up. (That last one I actually do know because he tells me “astronaut”, “rocket”, and “star” on a fairly regularly basis).

So when Caleb’s little voice runs around the house singing “rain rain go away” it speaks to me on a lot of different levels. Literally- yes, go away rain, you’re no fun. Amusingly, yes it’s precious to hear him sing. Figuratively- he’s a man of few but of very wise words. Rain and its cloudy skies that bring foggy minds and dark days, I would very much like for you to in fact go away. It would be fine to come again another day, but today, little Caleb wants to go outside and play. Because when the sun is out and the sky is bright, there’s a whole lot that little mouth wants to say and that puts a whole lot of hope in this mama’s heart.

If you want to know more about Apraxia, here you go.

If you want the back story on our decision to use AAC, read here.

May the rain in your week go away swiftly, friends.

 

Love and Autism,

Erin

 

No One Knew it Would be this Hard

I was talking to a colleague of mine today in casual conversation and we were talking about the personal side of Autism. How with SOME disorders, you know- at least in ballpark- some of what you can expect, diagnoses can be firm and confirmed by genetic testing, blood draws, and you can even have some insight into “why”. Because THIS genetic marker says THIS or because THAT genetic marker says THAT.

How can you know how hard Autism is going to be if you don’t even know how you ended up here to begin with?

I am a left-brained, rigid with structure, needs to know in order to function, action plan making kind of person. Like to the extreme. Some may even be surprised to find out my “we need to do this and then this and then that” personality is fueled only by caffeine. So, when I thought Caleb had Autism, I tried desperately for it to be ANYTHING else.

I wanted him to be deaf and not hearing anything. That would solve his language delay and lack of awareness. I also wanted to have had CMV while pregnant, I wanted him to have a genetic syndrome, and anything else that wasn’t the “A” word. That’s not to insult people that that has happened to or to trivialize other people’s experiences. That is simply said to be transparently authentic into what this journey is like.

It is 100% not because I thought he would be “better off” having this disorder over that disorder- it was because- at 21 months old being my very first baby- I needed to know and I needed to know why. It took  awhile after my first suspicions of Autism for it to be confirmed. There was no panel to run or blood draw to send off to tell me for sure. And then there came the onslaught of how and why.  There’s nothing to definitively tell me that either. I didn’t know where we sat in terms of function or severity…….how do I make one of my infamous action plans if I don’t know what I’m up against?

I will tell you- if you’re not in that part of the journey yet- that even for the most rigid of us- “going with the flow” comes in time and in the wise words of Queen Elsa, you do finally reach a point of being able to “Let it Go.”

You acknowledge, you grieve, you accept. And you focus on what your child needs to be the most successful version of themselves day to day. And you learn- if by trial and error alone- that obsessing over how you ended up where you are doesn’t help you get where you want to be, so you learn to give zero foxes about functioning levels and prognoses and why and how and you do what you need to do to make it through the day. That doesn’t mean you don’t worry, it doesn’t mean you don’t stress, it doesn’t mean you don’t need a minute because you feel overwhelmed. It simply means you have found the beauty that exists in the chaos and know that there’s light at the end of the tunnel. Even if you need a match to guide you to it. Or a Mag Light. Or one of those massive bright orange lights that air traffic control uses. No matter- you know you’ll get there.

So no- no one knew it would be this hard. Because no one knew what they were up against. Fortunately, what we also didn’t know is how strong we were to advocate for someone who hadn’t found their voice yet, how blessed we were to be a part of someone living life unapologetically, or how much we could love another human being.

Here’s to the beautiful mess that is not knowing, mamas. May we never have it all quite figured out.

 

Love and Autism,

Erin

The Words Unspoken

From the title I imagine you thought this post was going to be about having a child with nonverbal Autism. Nope! Plot twist.

We had plans today but some crud swept through here preventing us from going. We managed to work up enough good vibes to go to Lowes and the grocery store though. Running errands with Caleb isn’t easy, but we’re not people who take the easy way out anyways.

And I was so excited when it was over! I thought he did an amazing job! We were in Lowes for 35 minutes and Caleb sat in the bottom of the cart and built Lego people and was very quiet and happy as long we we were walking around the store. Which we did while I bombarded him with household vocabulary through the different departments. Then we went to Aldi and he continued building Lego people in the bottom of the cart while we went through the aisles. We passed the bread section, he took my hand and pointed to the wall of carbs, then put my hand directly on what he wanted as we walked by it all slowly. So, to reinforce awesome communication, I opened up the Sweet Hawaiian Rolls and he ate 3 until we checked out and were loaded in the car. No screeches, no attempts to leave the cart, no stomps- it was peaceful and nice and fun.

But when I was recanting to someone later about how proud I was of him, I got the wind taken 0ut of my sails a little. I was posed with the question, “but how successful was it really?”. They proceeded to tell me that Lowes was only successful because I kept the cart moving and Aldi was only successful because I gave him food. And that I wouldn’t have been able to do it by myself because I needed my husband to take Ari and get the needed items and I had to have a cart dedicated to making Caleb my sole responsibility.

I have noticed that things like this being said to me is becoming a trend. Sometimes, people bring things he has trouble with to my attention. Like I don’t make a 15 category lesson plan every single day for him to address his difficulties and delays and don’t know what he needs. Sometimes, people also only compliment him in relation to his Autism. “Thats so great! When would he have done that if he didn’t have Autism?” or “For a kid with Autism, he worked that puzzle really quickly.” There’s this whole big category of things people could say that goes largely unsaid by 90% of people we come into contact with. The words left unspoken are all the things he’s doing well or all the amazing things about him that have nothing to do with Autism. Don’t tell me what he’s struggling with, tell me what you notice he’s rocking out on. Compliment him on his achievements because he achieved them- not because he achieved them despite Autism. Yes, it is true that I have a large social media presence that revolves around the fact he has Autism- but that is not for him. That is for me and for other parents on this journey and to educated and promote acceptance. If you know me- like really know me- then you know I talk about Caleb allll the time and it is rarely in a context that has anything to do with Autism.

If 3 Lego men, a tour of Lowes, and a $1.75 package of Sweet Hawaiian rolls is all it takes for us to run hours worth of errands successfully, SO BE IT. He’s 4. This is obviously not the end goal. But before you get where you want to be, you have to simply start where you are. And this is where we are today, so this is where we’re starting.

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Love, Autism, and Hawaiian Rolls,

Erin