Disguise Learning with Play using STEM! (+ A Snapology LEGO GIVEAWAY!)

I’m so excited to be partnering with Nakturnal for a giveaway! Read below to find out how you can enter to win a LEGO® brick set of the Snapology Mascot- Sebastian Gator! Find a full disclaimer on the sidebar of my blog!


It’s no secret that we eat, breathe, live LEGO and all things STEM-based in our home. Not a day goes by that one or both of the boys isn’t stimulating their brain with those small colorful blocks, folding a paper airplane out of an old piece mail, or manipulating K-Nex into crazy, crime-fighting vehicles and winding roads.

When we realized that Col was a little different than other kids, it took no time at all to see the potential benefits of what STEM-based learning could do for him. Writing, Reading, and Speech as separate subjects are definitely a must-have in your child’s learning plan but, for kids like Colin, a science and mathematical learning environment is the most beneficial way to grow their unique little minds!

Snapology-9735

Fast forward to when we had K! We were quick to realize once he was at a play age that typically developing kids thrive in the same STEM-based environment as well! Which made play time between the two of them a bonding experience and way to encourage them to teach each other new ways of learning!

Now that you know our little back story, let’s get to why you’re really here: “How do I disguise learning with play using STEM and what exactly is it?”

  • What is STEM?

STEM is a way of learning based on the idea of educating children of all ages in four specific areas — Science, Technology, Engineering, + Mathematics in an applied, hands on approach. Rather than teach the four subjects separately, STEM integrates them into a cohesive learning paradigm based on real-world applications.

Pretty cool, huh?

  • What are the benefits of STEM?

1. It’s CURRENT!

In a technology-based society, science is forever changing and growing. As work places change by frequently updating their software, and equipment that we use in our daily lives becomes more advanced, STEM knowledge is vital. Staying up to date on the latest techy trends is a must in today’s world!

2. GET CREATIVE!

Creativity is one of the many benefits of a STEM education by implementing the idea of “Learning by Doing!”

Ironically, creativity is also the result of a STEM-based education ! STEM-based learning encourages students to get their hands ‘dirty’, solve problems, create new designs and functions, and make tools out of something that otherwise wouldn’t be!

3. INNOVATE, INNOVATE, INNOVATE!

With the growth of technology, is the freedom to invent and engineer almost anything you can dream of! Starting at a young age, we can encourage our kids to use their minds and create the impossible with STEM.

Disguise Learning with Play Header

Snapology-9749

1. OFFER THE RIGHT TOYS

I’m totally not suggesting that you go out and spend hundreds on an entirely new toy collection but, when birthdays and holidays come around, encourage friends and family to give more significant gifts that stimulate learning rather than the typical stuffed animal or piece of junk that will end up in a garage sale pile a few months later!

Some of our favorites:

  • LEGO
  • Magna-Tiles
  • Tegu Blocks
  • KIDS FIRST Engineering Tubs
  • Marble Run
  • Lincoln Logs

When choosing toys, try to make sure they incorporate and/or encourage one of the following: tinkering, building, circuit creation (adding pieces and parts to the toy that make it GO! or turn on and off), problem solving, or tech-based growth and learning.

Does the anticipated and totally loathed “LEGO dump” have you resisting adding them to your STEM collection?! Check out my post to help with that!

lego 6

2. ALLOW UNINTERUPTED + FREE WILL TINKERING

Sometimes, regardless of the mess it makes, you just have to let your little ones free with their tinkering toys without borders. I know, I’m with you. Walking into our home to a ‘road’ of K-Nex that stretches from the front door to, well, I don’t ever really know where, can be super annoying and seemingly pointless but, they’re actually using their little minds to create something super awesome and through the mess is some really great learning!

3. HELP + ANSWER WITHOUT FRUSTRATION

I know this one can be a bit difficult, especially when your knee deep in your own project but, when your little comes to you for advice or answers, they’re seeking you out for a reason! Curiosity is natural for growing minds and by shooting them down or showing frustration when they’ve asked the same question every single day for a week, you’re discouraging one of the greatest forms of learning. If you don’t know the answer to a question yourself, let them watch as you figure it out. Whether it be from a book, video, or the internet, seeing you seek out an answer encourages them to continue doing so through you.

4. ALLOW FREE PLAY WITH CRAFT SUPPLIES

Yes, for real. I mean, don’t give your kid all access freedom to liquid glue and finger paints but, offer them a bucket of dry supplies! Rubber bands, tape, twine, paper clips, pipe cleaners, popsicle sticks, clothespins, dowels, empty toilet paper rolls can all be used in creating some really awesome things. Change it up every other week or so with fresh supplies and new tools!

5. TRY A “BUILDING SNACK” TRAY

Similar to free play with random craft supplies, you never know what your little one will come up with when you offer them a tray of “building snacks” at the table! We love pretzel sticks, mini marshmallows, grapes, sliced olives, cheese cubes, and cheerios. You’ll be amazed at their first cheese cube-pretzel stick car with grape wheels!

6. INCORPORATE EDUCATIONAL SHOWS DURING SCREEN TIME

If you allow screen time in your home, there are a TON of education shows that go hand-in-hand with STEM-based learning! One of my favorite things as a mom to my littles is walking in on them super indulged in old school Bill Nye and The Magic School Bus. I love when they approach me to spill their guts about friction or some other super sciencey topic three days after watching an episode. It’s always a proud moment for us, even if they got it from a screen!

Snapology-9732.JPG

We use all of these tools in our day to day life as a family and although it took a little practice, it’s now just routine! Our family truly enjoys play time together AND apart because of this method and as parents we’ve learned to embrace the repetitive questions and constant mess of LEGO!

 


WIn Snapology.png

Giveaway closed.

Congratulations to Jenna!


Want to win a Snapology Sebastian Gator LEGO Set?!

(Recommended for ages 6+)

As parents of special needs + typically developing kids, we know from experience that every child is different and so is their preferred method of learning. So, as a soon to be family of three crazy boys, all different and unique, we’d love to know: Which of the ideas in this post is your littles’ favorite way of STEM-based play? (Haven’t tried one yet? Answer: Which idea are you most likely to implement first?) Comment below to be entered!

*Winner will be chosen at random 10 days from the post date on July 23, 2017 and will be notified via email. US entrants only please. Prize is a LEGO® brick set of the Snapology Mascot, Sebastian Gator, mailed directly to your home!


Curious about Snapology?!

Snapology is a STEM-based kids’ facility that hosts totally rad play dates, birthday parties, field trips, workshops, + summer camps where littles (ages 1 and up) use LEGO, K’nex, art + mosaic, code, robotics, and more to learn through play! Sounds super awesome right?! Well, they’re looking for someone interested in becoming a franchise owner in the Central Florida region! Give them a call or apply online today if this sounds like the spot for you!

Pin It Image

stem, autism, special needs, homeschool, LEGO, giveaway, win, LEGO giveaway

Why I Chose NOT To Share My Special Needs Child’s Swimming Success On Facebook

Okay, I know what you might be thinking by the long title up there…”uhh, it doesn’t make a difference to us either way…” Maybe, maybe not. But, if you’re interested in knowing why, I’d love to share with you.

So, I am totally the type to post all of my kids’ success stories on Facebook. I mean, I’m obviously biased when I say that i think I have the coolest 4 year old on the planet but, hey sometimes we’ve got to keep a bit of their coolness under wraps so the other little tots don’t get jealous, right? Totally kidding.

Okay so, rewind three weeks back when hubby and I were almost ready to give up this summer on teaching the little man to swim this year. We’ve had that kid in the pool EVERY SINGLE DAY. Once the pool was warm enough-ish to swim, he was in the pool with a cheer squad rooting him on at the side lines and GUESS WHAT? He DID IT! Right as we were ready to stick him on a noodle for the rest of the summer, HE DID IT.

I could already see it: long Facebook post about how incredible it was to see him swimming before his 5th birthday, tears rolling down my face as I shared our success with the online world, and all of our friends and family commenting their praise. It would be perfect.

Why didn’t I do it? Why didn’t I share our triumph on the one platform that we knew everyone would see? It’s simple really: SOME THINGS ARE MEANT FOR US & ONLY US.

There are so many things we, as “millennial parents” share with the world. What we eat, where we vacation, our good and bad relationships, our stance on politics, the things we think are funny, hell, even the things we see in our most private moments…you know, on the toilet. BUT, sometimes there are things that should just be kept sacred. Maybe not forever but, at least enough time to embrace the moment without a phone in your face or a camera strap hanging over your shoulder. Do I have photos and video of that day? Duh. I mean, I’m not saying that I don’t want to remember this amazing moment but, am I going to share them with you? Not right now, maybe not ever because this is something I want to keep to myself.

Now, cue the tears. There are so many things we question in our life with Col. Will he grow up to live on his own someday? Will he have successful friendships and relationships when he gets older? Will he get married some day? Shit, I even question (and secretly hope) that he will become the next Bill Gates, seriously.

One of the things we have recently questioned is if he would swim before he was in school…before he was surrounded by other kids his age who would or just had another possible reason to bully him. At the beginning of the summer, I remember specifically telling hubby that I thought for sure the little would swim before Col. I was wrong and I feel so guilty for it but, I am SO happy that I was WRONG.

I wish I cared a little less about being so selfish and keeping this moment to myself…actually, no i don’t but, I am sorry that I won’t be sharing this HUGE moment for our family with you and I hope more than anything, this post encourages you to do the same with some of your kids’ major moments in these few little person years that you have with them.

So, to end this…I would tell you to comment your recent kids’ success story below but, that would end this post as an oxymoron so, instead, I want you to remember it a little longer with your family and embrace these moments that you have with them!

 

 

 

 

DIY Felt Squares Craft

  
Now that we’re home schooling, we’ve upped our crafting game to incorporate more colors, numbers, sorting, matching, and alphabet development at home!

About a year ago, my hubby brought home a set of felt squares similar to these. One problem: there wasn’t a ton of educational value to them and they were more focused on sensory development for touching and feeling different fabrics and textures. So, I set out to find a set that I thought would be better for us but, was quickly reminded that the only way to really find a custom learning tool is to MAKE one! That’s when Little Man and I set out to find the perfect colors and textures for our new squares set!

  
He picked tons of colors and styles. We chose soft textures, hard textures, rough and itchy textures, and of course, some really furry ones too and in all different colors! We shopped until we dropped and once we got home to put little brother down for a nap, we got to work! 

   
I really wanted a set that could be used in a variety of ways. So, we did our squares double sided and mismatched the colors to also use them as a matching game! 

Supplies:

Felt in 8 different colors

Sewing machine or needle and thread

A handful of different textured fabrics  (vinyl, burlap, fur, fleece, leather, etc.)

Cotton stuffing
Instructions:

1. Cut Each color and fabric into 2- 4 inch x 4 inch squares.

   
    
 2. Pair your colors and squares up (We mismatched out colored felt pieces to make a sorting game.)

   
   
3. Sew your squares together. 

  
4. For the vinyl, zebra, and burlap, we stuffed a little cotton into each to make them less stiff and little man loved it because he they looked like mini pillows!

  
Game ideas:

Naming colors

Counting

Sorting

Matching game

Textures (which are hard?, which are soft?)

   
 

HULK SMASH Game +FREE DIY Hulk Mask Pattern

We played this game at our Marvel Avengers Vs. The Justice League Birthday Party and because it was so much fun, we revisited it recently to encourage play with grainy, messy textures!

What you’ll need:

MASK Instructions:

  1. Trace your pattern then cut out your Hulk Face + Pieces with this FREE Downloadable Hulk Mask Pattern!
  2. Hot glue Eyebrows & Hair onto the lime green face base.
  3. Measure the elastic halfway around your child’s head. Once you’ve found a good fit, stitch the elastic onto both sides of your mask.

Hulk Mask Pattern.png

HULK SMASH Game Instructions:

*Make sure to suit up in your new Hulk mask for this one!

Place ice creams cones top down, after counting, “1, 2, 3 HULK SMASH!” Punch down on your ice cream cones!

I recommend this play for outside since it made quite the mess inside at our birthday party last year but, you can use this game for counting, colors, sensory processing, and coping with aggressive behaviors before a meltdown!

DSC00735

This gorgeous tassel garland was made by Project Paper and it was the PERFECT addition to our Hulk Smash table!

DSC00738   hulk smash edit

DSC00755

DSC00743

The aftermath.

DSC00748

A Letter From an Autism Mom.

image

I need to share something…PLEASE, I’m begging each person as you scroll through your news feeds, emails, updates, while your laying in bed, waking up in the morning before you start your day, taking a break to hide away in the bathroom at work, if you read a single post, please, please read this one.

I have a dear, dear, darling friend with a similar, yet harder, lifestyle as ours and she shared something with me recently that was heartbreaking. I want you all to know something: Families like ours NEED support. We NEED helping hands, soft eyes, caring gestures, and understanding. SOME children with special needs, behavioral tendencies, and delays do not “LOOK” like a child who has “special needs” but, just because they do not “look” like a child with needs does NOT mean that they are just an unruly child in need of discipline. When you’re out in public and see a child of ANY age struggling….infant, toddler, tween, teen…Either offer a helping hand or turn the other cheek because (not to be harsh) we don’t need your judgy eyes, sly remarks, pointing fingers, or “someone needs a nap,” commentary. When you have another free MINUTE…just 60 seconds, instead of watching that weird cat video of the kid throwing a small feline mid dance, educate yourself…Hit up google or Siri, and ask how to help a parent of an Autistic Child in need. The more educated the community is, the more tolerable everyone will become and the easier it will be for parents like us. We are not super moms or super dads and we don’t TRY to be, nor do we strive to come across like our schedules or lifestyles are any more important or busy than YOURS but, the truth is…THIS IS our NORMAL and there really is BARELY any time for us to shower, brush teeth, catch up on shows, sit and eat a meal while it’s even at room temp after sitting out while everyone else eats, reply to texts, or even take a breath without it being full of anxiety and stress. We don’t vent about our over-stuffed therapy schedules that lead to overly tired kids, meltdowns, and limited tolerable environment selections because we want you to feel BAD for us or to “ONE-UP” you…We just want you to know that we aren’t ignoring or pushing you to the side, we are just pre-occupied and by the time we have an extra free minute to possibly text you back, there might be something we want to do for OURSELVES FIRST, like: pee…poop or, idk maybe watch THAT funny cat video on facebook that you’ve seen six times already. I am not exaggerating and you wouldn’t believe the amount of judgement that is sometimes placed on parents like us just from simply venting about the struggles…Some of you might be doing it now…or some of you might have been THAT person who is thinking to yourself in line at the store: “That parent needs to get a hold of their kid.” But, sometimes, we’re at THAT store to CURVE the behavior. SOMETIMES we’re just really freaking tired of having an empty fridge because we haven’t been able to manage the grocery store during a peak behavior time (which can be WEEKS) and we’re starving or sick of take-out food and so is our wallet. SOMETIMES, we need to see other human faces than the ones two feet below us every single day. Sometimes (MOST OF THE TIME) you’ll show up to our homes greeted by a child in only their underwear. If you’re lucky, they’ll at least have their privates covered long enough for us to answer the door because our children can’t bare the feeling of clothes on their skin which leads me to: SOMETIMES we don’t want company and don’t want to feel guilty saying “no” because we’ve spent close to the entire day cleaning up poop from the floors and walls because our children REFUSE to train and REFUSE a diaper but, have no problem crapping on their brand new train set or barbie doll. SOMETIMES, no, ALL of the time, we just need support. We are TIRED, hungry, probably constipated, anxious, stressed the F out, balancing things we NEVER thought we’d have to manage, worrying about YOUR (general) judgement and opinions, and trying to maintain and happy life for our children, husbands, and ourselves. I have personally been an anxious wreck really struggling for months and it has only gotten worse. The anxiety sucks, the constant worry about other people and their judgement while I’m filling my grocery cart…it DOESN’T stop. Too many people have said to me, “Don’t worry about what other people think.” But, what they don’t understand is that it’s NOT just about what those people think or feel about ME at that exact moment and MY child while he’s throwing a tantrum or having an unexplainable meltdown, it’s about the OTHER kids in the world like him, and the other parents who are also getting the judgy eyes and snarls. Just please, educate, understand, and be nice.

Love,
an Autism Mom.

image

They Say He Has Genetic Disorder…PART 2

Alright, so where to start, where to start…I guess where I left off, right?

First, I want to say that I am in no way, a Dr., Genetic Specialist, Scientist, Therapist, or really anyone that can asses or diagnose your child. I am however, a parent going through some pretty tough shit. 🙂

Back in my last post (if you haven’t read it yet, you can find it HERE), I mentioned something about a new test we were waiting to get approval for (the one that costs $7,000 up to $23,000-which insurance doesn’t like to cover AND that we thought would take two years or so to get). Well, I am happy to say that shortly after that post went live, we had a genetics appointment at Nemour’s Children’s Hospital where we had been seeing our Geneticist since day one. She told us that the test had been doing very well with her patients and other patients within her board who study children similar to Colin. This test isn’t offered for everyone, it’s kind of the last resort when there’s no where else to turn. Not only was the test getting great results but, insurance was starting to approve coverage on it and she wanted US to apply for the test! Yay! ABSOLUTELY, ABSOLUTELY, ABSO-Freakin’-LUTELY! So, we did! She applied for Colin to have the test and approval or denial takes about 6-8 weeks- we waiteddd. Before leaving our appointment, we learned all about the test. Here’s a quick outline based on what I gathered from her and personal research:

Test Name: Whole Exome Sequencing

How test is done: Blood Test drawn for Biological Mother, Father, and Symptomatic Child-In office

Length of time between test and results: I’m sure this can vary but, ours took approx. 12 weeks

Purpose of parents having blood drawn: The purpose of the biological parents having blood drawn for this test, is to give a baseline, should the lab results come back with anything alarming from the child’s DNA (i.e., deformed or mutated gene’s, genetics that indicate high risk of disease or illness such as cancers, etc.). Upon dissecting the child’s blood, if they find mutated gene’s, they will look at those gene’s from the biological parents to determine where the mutation came from. The same goes for the high risk of disease- this only means, if the test comes back negative for high risk, that it does not COMPLETELY disqualify the child of cancer(s) or for being high risk but, it gives a good idea, and they would not look into those indicators from the parents if it came back negative. 

Back to the approval of the test…We waited to hear back from the genetics department to know if we had approval and finally the day came! We got it! We were approved coverage for the test. Our appointment was made and we each had blood drawn- Colin, myself, and James We were asked to sign consent forms giving either approval or denial, that if the lab specialists should find Colin at high risk for cancer(s), once they research James and I’s blood, whether or not we would like to know if we are each high risk cancer as well.  Either way, the lab specialists would still look into our genes to find where the risk came from but, it was a matter of whether or not we wanted to know for ourselves. After a total breakdown and anxiety attack, I approved, and James did too. This choice really had me squirming. Would you, or would you not want to know if you are high risk for cancer(s)? (If you remember by the time you finish reading this, I’d love for you to comment your answer and reason below!) I finally said “yes”, after contemplating “no”, for this reason: My immediate reaction was “No, I do NOT want to know.” Not because I didn’t want to know for my family but, if it came back with a yes, I really didn’t know how my mind could actually handle knowing that every single day for the rest of my life. Even though you may be at high risk for cancer, it doesn’t mean you WILL get cancer, it just means you are at a higher risk. With that said, I have EXTREME anxiety that I am still battling with on a day to day basis and I just didn’t know how I could function everyday with my mind worried about something that I could have said “no” to. BUT, I have two children that I love more than anything in this world and a husband that I want to have me as his one and only wife for the rest of our lives so, my reasoning for saying “YES” was for them. It was for us to know as a family so that we could make sure all of the proper care was taken to prevent the possibility of a late diagnosis of something like cancer later down the road.

That was it. We signed the consent forms, gave a little blood from the three of us and were on our way to wait for 12 weeks.

UPDATE:
During the time while we were waiting for the test results to come back, Colin was given an Autism diagnosis from his PCP as well as an Individual Education Plan (IEP) from a local public school. We applied, and struggled, to get him into the Special Needs Pre-K program at one of our local public schools for a few months. Let’s face it, the poor kid needed some REAL social interaction and day care would likely kick him out on the first day based on his behaviors. Best scenario would be the teacher going home from his first night at the day care with only a couple bruises on her. So, we needed a place that he could not, would not be kicked out of and that he could learn social skills, proper behaviors, and really, give me a little break. A friend of ours and our AMAZINGGGG behavioral aid helped advocate for us to get him into the program. (See one of the steps HERE.)

What is an IEP, you ask? …and how do I get one?

IEP stands for Individual Education Plan

Before an IEP is written for a child with a disability, the school must first determine whether the child qualifies for special education services. To qualify, the child’s disability must have an adverse effect on the child’s educational progress. This is determined in a series of tests conducted by specialists within the field (behavior aids, speech therapists, special education experts, etc.) The school you are attempting to attend should give you the proper information and connections to have your child observed for these qualifications. If you are approved, should you feel the need to change your child’s IEP by adding goals to it, you can call a meeting at any time to do so.

Colin completed his evaluations for the IEP and at first was denied..YES, denied. Even though BOTH teachers who did the observation agreed that he could not withstand attendance at a mainstream preschool. These evaluation and test results are not based upon the expert(s) just physically looking at and examining your child and making a quick decision, They have to follow a set of guidelines, and fill out packets of hundreds of little bubble marked answers based on the child’s reactions and abilities to certain physical/hands-on tests, tally up the results from each category and if your child falls ONE or TWO (like Colin), points within the category, they are denied. HOWEVER, DO NOT, i repeat, DO NOT be discouraged. If you feel that your child is in need of a special needs program for educational development, YOU FIGHT for your child. You CAN call a meeting with the board from the public school’s Special Education department to fight for your child to get into the program. There is no guarantee that they will then make a place for your child in the program but, if you feel strongly enough that this is the path for your child, you CAN resort to this. We did. The experts who evaluated Colin briefly mentioned that they could call for a meeting to evaluate the results of Colin’s tests and see about him getting in….boy, did they not realize who they just said that to. I was a momma on a mission and I WAS getting my kid into that program or I was going to be moving to another county to get him into one there until I found one to accept him.

*Reminder: We’re still waiting for results from the Whole Exome Sequencing…

Colin’s assessment was done the week before winter break so, I was on the phone EVERY single day that week making sure the school had everything they needed to set up that qualification meeting for him.. sure enough, Mission Impossible: CONQUERED. Cha-Ching! Proud moment right there!

By the time school came back from break, I waited and waited to hear about the meeting. Luckily, we had a family friend to help bump things along but, if you don’t do not give up. To put it clear as day for you: HOUND THAT SCHOOL UNTIL THEY GIVE YOU THAT MEETING. 🙂 *I do apologize to all of you who work within the school system reading this, I am one of “those” parents and I am terribly sorry that I am encouraging other’s to be the same 🙂 But, you gotta do what you gotta do, right?

Our meeting was scheduled, we received a letter in the mail to confirm our date to sit with the Special Needs director and teacher of the program, as well as others at the school Colin would hopefully attend. The meeting was great. They had already looked over Colin’s paperwork and results to find that his behaviors were EXTREME and HIGH RISK and some of his intellectual skills still needed some slight tweaking and stimulation. Although some of his scores were above average and fell into a category of a very intelligent child for his age category, those behavioral attributes just proved what we had been telling the school. So, they approved! Colin started school two weeks later! Yay!

He’s doing fabulous! To wake him up in the morning I simply have to say the words, “Colin, do you want to go to school?” and from a dead sleep, he SHOOTS out of his bed like it’s a missile launcher! His speech is phenomenal, still very hard for outsiders to understand but, we’re working on it! AND, he’s even verbally spelling his name. He’s finally singing to his little brother and dancing when songs come on at times! He likes to play dress up at school (fire fighters are his fave) and even makes his own choices when given two selections of things (meals at a restaurant, shoes, clothing, or toys.) We still have intense melt downs and tantrums at times but, it’s been great!

FIRST DAY OF SCHOOL-

school day

DRESS LIKE A TEACHER-

colin teacher

CAREER DAY-

colin career

RESULTS ARE IN!!

Nada. Yep, you read it right. NADA. NOTHING. ZERO.

The test results came back with nothing but some mutated novel genes.

What are novel genes?

Novel genes are uncharacterized genes that scientists have not previously identified to a gene family in human’s yet. Scientists are not sure that they do or don’t have major value within human’s at this time.

However, these particular genes in our case, have been tested on rats. Mutations in genes can either have no effect, alter the product of a gene, or prevent the gene from functioning properly or completely. Since we do not have research on these genes within human’s there is no way to determine at this time whether or not the same affects that these gene mutations have on animals (rats, in this case) would be the same for humans. Some of the gene mutations Colin has within his DNA are common in rats with cardiovascular problems.

So, stuck back at square one.

Anddd, I know you’re curious. Colin did not come back high risk for cancer so, they did not test our DNA to find whether or not James and I were.

During our appointment to hear the results of the test, the fire alarm went off in the hospital building. Everyone evacuated and upon reentering the building after it was cleared, our Genetic Specialist’s partner (the one who observed Colin in my previous post) stopped our Dr. and asked if Colin was the same child she quickly assessed a few years back. Our Dr. answered yes and told her that we were in for results of the Whole Exome Sequencing, one of the BEST tests available to us right now, and that nothing came back. The partner was just as astonished as our Geneticist and they both agreed to have pictures taken of Colin to bring to their next board meeting with the other part of their Genetics Team from out of state during the following week. As for right now, Colin just has “Colin Syndrome.”

To rule out other ailments that may go along with a genetic disorder, Colin will have a sleep study and cardiovascular assessment done in the coming weeks. For now, we will wait until our next appointment or until the next big thing in genetic testing comes out! We will also be participating in Colin’s first fundraising event at the end of this month, May 30th for Autism Society of Greater Orlando as Team: Colin’s Colossal Cronies!

Thanks SO SO SO much for reading and for following along with our family!

I appreciate the shares on Facebook, the messages, emails, group adds, and loving words more than I could EVER express.

Hope that you all have had a wonderful Mother’s Day!

xoxo

The Wentworth Family

colin bapa

colin daddy colin momma

Profile View of Physical Deformations: Epicanthal Folds of Eyes,Nose lacking bridge, Low set ears and tilted back,Strange hairline and eyebrow turns

folds

In the meantime, the INCREDIBLE founder and owner, Kristy Corley at The Mom’s Magazine, asked Colin and I to be on the cover and share some of our story in January. Follow The Mom’s Magazine!

moms

They Say He Has A Genetic Disorder…

I would first like to say, I am in no way, shape, or form qualified to make an assessment on any child and their development. This post is solely to share my son’s story and inspire other moms to share theirs. I’ll try to make this one not too lengthy but, to get every major detail into this post, it will take a little more than a few cute photos and a couple paragraphs. But, to trim some excess, I’ll cut right to the chase.

When my son was born, he was a perfect 8 lb 3 oz little man, with only very slight jaundice (no lights), and blessed me with a pretty typical, easy pregnancy (minus the nausea and heartburn)! As first time parents we didn’t know what was or wasn’t normal for an infant, and of course being our age (23 & 25) and having no family history of genetic disorders, raising a special needs child never even crossed our minds. However, at times, when I would take “bragging rights photos” of my little one, I sometimes deep down saw that maybe our baby looked a little different but, since no one else said anything or questioned it, I never put much thought into him looking a little bit different than most. At his one year check up appointment, alone with my little guy while hubby was at work, our pediatrician asked if he resembled his daddy. She had seen dad before so, I didn’t really understand what or why she was asking but, it had been a while since he accompanied me to an appointment so, I answered “of course!” and didn’t think much of it. Seconds later she said to me,”Oh okay, I’m only asking because well, I’ve gotta admit since the first time I saw him (when he was born!), I immediately thought DOWNS!” I stepped back, sat down, dropped my jaw, picked my stomach up off of the floor, and asked her to repeat what she just said. We had been seeing her for a year and of all times to bring this my my attention, she does it now?! When I’m completely alone, with no support, and so nonchalant as if she just asked me if I like peanut butter and jelly. After a trillion questions, and her appointment timer cutting me off short as she scooted me out the door, I contained my composure and walked out. Immediately I called my mom, shaking and crying and well, just completely losing it to be honest, and after letting reality set in for a moment, I called daddy. He had only been working his new big boy job for a couple of weeks and I knew this was not going to be an easy call.  Thankfully, this man is one of the most rational (99% of the time) and  realistic people that I know. He didn’t get upset or freak out, he just told me, “You know what, we love him either way and if there is something different about him, then so what?! What will it change? Nothing. Stop crying, don’t be upset, we will take care of whatever he needs and get him the help he deserves. Where do we start?”

Not even a day went by before I had a genetics appointment made for LO at the Nemours Children’s Hospital and a Karyotype screening scheduled to test his blood for Downs Syndrome. I felt so guilty for not listening to my gut, for not asking his pediatrician if I’m just seeing things or If he does look different. I wish I had, I wish I could have just listened to my motherly instinct and blurted it out at one of his many appointments. I didn’t, and there’s nothing I can change about it now but, what I CAN do is listen to that urge from now on, and push to get my son anything and everything he needs, no matter what the consequence may be. We didn’t hesitate and took him for the first available appointment the lab had for his blood work, and fourteen days later we were making a two hour trip to see our new genetics specialist. The results came back negative for Down’s, which was a relief but, started us down a path of even more questions. To sum up most of the appointment, her professional opinion of our guy was that there is something going on, something abnormal, but she’s just unsure of what it is. His physical appearance resembles a Down Syndrome child but, his behavior and skills resemble something else: a different, most likely more rare, disorder. She didn’t know exactly what but, was 90% sure that whatever it is, is not a common diagnosis, and told us even with the most expensive testing offered right now, there’s a risk we may never know what it is.

To give a quick description of his appearance, which at this point was the ONLY reason for concern of a genetic disorder, I will list his “abnormal” features below:

-Epicanthal Folds of the eye lids
-No Bridge of the nose
-Low placement of the ears
-Ears slightly tilted backward and pointy at the top
-Circumference of the head small by 2-3 cm
(He resembles an Asian child, of which neither of us have in our immediate bloodline. So strong does he have this appearance that, to this day, random people approach us and try to CONVINCE me that my child is Asian or adopted, he is neither.)

DSC00657 DSC00622

Fast forward 4 months to another test. We waited almost 6 weeks for approval of a second, different test, another 2 weeks for lab work, and another 4 weeks for results. Then, tack another 2 weeks on for our appointment and we were finally able to go over our results for his second test. The test was called Microarray. It too was a blood test drawn into a couple viles at a lab and then dissected by our genetic specialist and her partner. Basically, the way she described it to me was that this test gives a birds eye view of all the chromosomes. If there is one that is majorly disformed or under/abnormally developed (Genetic Mutation), there is a 15% chance of finding it with this test. (Yes, I know, 15% seems so small and almost worthless, but to get up to more conclusive tests, you have to start from the bottom and work your way up the ladder.) During this analysis of his chromosomes, again everything came back normal. We were so thrown off. Was there something abnormal or wasn’t there? Is this even worth it? He’s developing on track, his gross motor skills are above average for his age, are we wasting our time? You know, as a parent you never expect this, your kid should be perfect right? You KNOW your child WILL without a doubt, be the popular, most attractive, most talented kid in all of his school years and then will grow up to move out on their own, have an excellent career, and eventually a family of their own. Without a diagnosis, a typical developing child, and a few normal test results, the thought of “maybe my kid just looks different,” was always in the back our your minds.

After reviewing the results of the Microarray test, I asked our GS if we could get a second opinion from another specialist in her office. Within only a few seemingly long, daunting minutes, her partner entered the room and did a quick assessment of our son. For the third time in 5 months, from the third of three professional observations, we got the same response: “I know there’s something, I can feel it, I can see it but, I just don’t know what it is. Going over all of his results, seeing his appearance and also reviewing his skills, I just don’t know that I’ve ever seen a child like him before. He resembles one thing but developmentally and socially resembles another.” The partner leaves the room and our GS reenters by herself. She tells us to give her a few months, come back in for a look and a review, and hopefully by that time we can evaluate him based on his progress developmentally, to see what path to take. (At this point he was close to on-track, within a few months he would be speaking and we could evaluate his placement on the percentile chart.) We scheduled our next appointment and headed home.

“Vroommmmm…” Fast forward again, 4 months later, little man is having the most terrible, violent, aggressive outbursts and tantrums, which include head banging on doors, floors, and walls, and biting …HARD. We were at a point that we could no longer even take him in public. (Just to list an example: We were at a local Olive Garden for dinner one night and we, as always, placed his dinner order before ours.  His food came quickly and as he wanted but, out of nowhere he rips and tears daddy’s watch right off of his wrist and full fledged throws it at an elderly woman at the table next to us. Then proceeds, to just start whaling on daddy with both fists. Next, he picks a fork up to throw it but, thankfully our reflexes wot that we could no longer even take him in public. (Just to list an example: We were at a local Olive Garden for dinner one night and we, as always, placed his dinner order before ours.  His food came quickly and as he wanted but, out of nowherrked quicker than he could release and we saved that one, for him to start banging his head on the table. At this point, completely horrified with my eyes welled up with tears, I apologized to the woman, picked him up kicking and screaming, and walked out of the restaurant. After packing him into the car, I had a few minutes alone to actually assess the situation that just went down. I was in disbelief of what had just happened and couldn’t stop wondering what everyone in the restaurant was thinking. The next day, I called and scheduled a follow up appointment with our GS. We weren’t scheduled to see her for another month and a half but, I was growing concerned at his extreme behavior and at this point was expecting a second baby.

We went in for our appointment and discussed his development. She gathered that he was approximately 4-6 months behind on speech but, above average in his gross and fine motor skills. She referred us to a services program which would evaluate him for therapy services and help get us the funding assistance we needed to get him on the right track. As for getting closer to a diagnosis, the only other test being offered at that point, that would be beneficial to our family, was a test that was not covered under insurance and started at $7,000 going up to $23,000, depending on how far you wanted to go with the test. Thankfully though, she assured us that within a year or two, with more knowledge and experience with the test, insurance companies will start approving this test and they will be less costly. Not to mention, with more experience and knowledge about the test, the percentage of the test coming back with results will be higher. At this point, the only thing to do, whether we had a diagnosis or not, was to start therapy. So, I jumped on that bandwagon. For anyone who has a special needs child, or knows someone who does, you are most likely aware of the untimely fashion of getting approved for services or even getting an appointment with a company that evaluates your child to be approved for services. Don’t get me wrong, I am INCREDIBLY thankful to the company (Early Steps) we worked with. The women are so caring and kind, and truly want the best for the children and families they are helping, By my statement, I am only trying to put these time factors into perspective for parents that are unaware or new to these experiences.

After waiting 3 months for our appointment, my son was evaluated/observed by 4 specialists. We went into the appointment expecting to MAYBE get approved for speech therapy but, left with the results of 8 months behind in speech and needing in-home speech therapy, behavior therapy for his outbursts and aggression, and occupational therapy for sensory overload. They gave me a huge packet full of forms and a ton of information I really didn’t even understand, as I was still trying to process that we were leaving with triple the amount of feedback I was expecting. They explained to me that their company (Early Steps) observes the child, assesses whether or not they need therapy, and upon approval, refers you to another company/companies that actually employ the therapists we will use. For any fees that insurance does not cover, Early Steps will cover the difference for the families.

Within a few weeks of our evaluation with the Early Steps program, we started therapy 3 days a week for Speech, Behavior, and Occupational (Sensory) intervention. I read everything I could find online about early intervention to prepare myself for each session. For each form of therapy we were asked to complete several verbal and written questionnaires for the therapists to map out what our path should be.

Our first session was Behavior Therapy. A nice woman came to our home and sat to watch me interact with my son, who is very selective of who he connects with. When it comes to showing affection and attention, if he doesn’t get a good vibe from you, he WILL make it clear that you are not welcome in his space. For some reason, he did not have a connection with her, and after a few weeks of treatment, I had to request that we parted ways. Our sessions were 30 minutes long, but the aggression and outrageous behavior would carry on all day once she left, which was making the process even more difficult for me. I went almost two weeks with emotional breakdown after breakdown, sometimes 3 times daily. I was so overwhelmed with his behavior and no one warned me of the “spike” before starting therapy. Yes, a “spike”. Within a few weeks, or possibly days, of starting treatment, changing a routine, or revising your reaction to outbursts, a child’s behavior may spike as they try to reject the changes you are making. Mine did. He was more aggressive, more violent, and excessively pushing my buttons and testing my boundaries. Once speech and Occupational therapy started, I was more than relieved. Our speech therapist, who we had never met, walked through the front door and this uplifting feeling came over me. I felt like she was IT, she was the one that was going to clear our slate and give us the help we needed. This woman is UH-MAY-ZING. She came in and immediately acknowledged our little guy. She pulled out puzzles, handed him some pretzels, and really had him intrigued. He didn’t want her to leave, which is saying a lot for a kid who literally shoves people out the front door and slams it shut. Over the next handful of weeks with her she was able to get him saying more than 8 new words and was so vastly dedicated to our son and his needs, that she pushed and pulled to get us in touch with an unbelievable Behavior Therapist, who’s schedule was already jam packed and overbooked. She did some begging and pleading for us and not too long after did we have the next perfect piece to our recovery puzzle. We are also blessed to have a wonderful Occupational Therapist as part of our EI team, whom we visit out of the house once a week and has given me an unmeasurable amount of advice and intervention options. All of which, have worked wonders!

After listing off to our new BT, a variety of *un-noted* issues that we had with the last BT, she jumped right up to bat with her goals for us. Instantly trying to form a connection with our son, she got down on the floor to play with him, gave “high fives”, and took into account that I noted he demands a little more personal space that most kids. We went over our concerns again, and she addressed every single one. She was only deemed an hour for our session but, stayed until she covered every ounce of information that she felt was beneficial to us.

Without a diagnosis, we have been appointed the minimal amount of time per session, per therapy. Our weekly schedule includes: 1 hour of 1 day of Behavior Therapy, 1 hour of 1 day of Speech Therapy, and 30 minutes of 1 day of Occupational Therapy. We are attempting to get more time but, at this point it is the bare minimum. In December, we will lose the Early Steps program and will be transferred to the public school system. To say the least, we’re crossing our fingers that we’ll be approved to keep our in-home therapy with the specialists we already know and have formed great connections with.

Going on almost 6 months of intermittent therapy, our little guy has had more positive changes than I could have ever imagined. We still don’t have a diagnosis and he isn’t a perfectly speaking, well behaved child but, we are closer to our goals, and having less, shorter tantrums as each day. His speech has gone from 8 words to more than 50 and he can sit in the front part of a shopping cart, which was NEVER an option for us before! He is also somewhat swinging at the playground, and willing to show affection to well-known friends and family. We are scheduled to have a Whole Exome Sequencing test this fall, and will be evaluated by a developmental pediatrician, who may or may not diagnose our son as being on the Autism Spectrum.

IMG_3443

As for advice to other moms going through a similar experience, I can only tell you that my biggest regret was not listening to my intuition. Not that it would have made much of a difference but, we may be slightly closer to a diagnosis for our child. I also feel that when it comes to therapy and intervention, be open minded. Try everything and anything they offer you! There are so many parents that look at me like I’m crazy when I pull out a handheld brush in the middle of Publix and start going at it as I brush my toddler’s arm but, it works for us and I’m so glad I didn’t let the wandering, wondering eyes concern me.

I know I have left out a ton of information and experiences but, this post was intended to get the key parts of our story exposed and to inspire other moms in similar situations to express their thoughts and feelings.  If you have any questions or want to pick my brain a little more, please feel free to contact me via the comments section in this post or email at TheHappeningHousewife@gmail.com.

Thank you for taking the time to read our story!