Sunday, January 9, 2022

HELP! My Baby Was Just Diagnosed with a Rare Disorder!

See if this scenario sounds familiar: A doctor tells new parents that some of their baby's tests have come back with abnormal results, and that their baby has been diagnosed with a rare disorder. The doctor is not familiar with this syndrome because of how rare it is, so gives the family the name of the disorder, maybe a little basic information from a medical website, then tells them to schedule with a genetic counselor/ geneticist, and leaves it at that.

So the parents leave the office, stare at their baby, and then burst into tears. They never expected that their sweet baby would have any medical struggles. What did all this mean? They need answers, and they need them NOW!

So they rush to ask dear Dr. Google all the questions. What is (fill in the blank Disorder)? Everything they read terrifies them, and the whole experience feels surreal. They find a tiny website dedicated to this syndrome, as well as a small facebook parent support group and join immediately, often before they even have told their own family. They ask the parents in that support group what to expect. They want to take a glimpse into the lives of other families living with the same condition and to get an idea for the prognosis for their child.

And then, something incredible happens. They become an instant member of a new family. The community surrounds them with love and support. The other parents tell stories about their own family member with the same diagnosis. They share encouraging stories of success, some ideas of what to expect, send "Welcome to Holland" to the new family, and the parents cry all over again. 

So then the parents research and research and research some more. They feel like they have to learn everything RIGHT NOW! Speech therapy, MRIs, g-tubes, physical therapy, DEXA scans... 

The family goes through wave after wave of emotion. They sometimes feel empowered and ready to change the world for their child. Other times, they feel like they can't even get out of bed. Some days, they get angry at the world and feel jealous of the other families who don't have endless doctor and therapy visits. 

All of that is normal. It is part of the Grief Cycle, and the parents will learn about it more and more over the years. They slowly learn that it isn't a process where there is a start at Denial and end at Acceptance, but a circle that goes around and around. Eventually, they will spend most of their time in Acceptance. But it takes time to get there. And that is okay. 

At first, the parents will feel overwhelmed. There is so much to learn! Their child has a team of doctors whose specialty the parents struggle to pronounce, there are medications and tests and labs to keep track of, they have no idea what IEP, EI, ADA, and IDEA mean, and they think an Occupational Therapist is someone who helps you with your career. Medicaid vs Medicare? What is the difference? What on earth are waiver wait lists for services?

But with the help of their newly discovered support community, the new family figures it out. They get used to therapy appointments, handle EEGs like a pro, and take a million pictures of their adorable baby. They look into that baby's eyes and realize that they would do anything for them. So yes, life looks a little different now, but that is okay. Grief still comes and goes at times, but the family learns to appreciate life in a way that never would have been possible otherwise.

That new community that accepted and helped them immediately? They are like family now. They cheer on each other's successes, and commiserate over struggles. As their baby grows and develops, they realize that they love this life they have been given. And one day, when they pop onto that support group, they see a new family asking "My baby was just diagnosed with this condition! What do we do?" and they realize they have the answers and are ready to help. 

A Couple Tips for Newly Diagnosed Families:

1. Look up your local Early Intervention program. They will have lots of resources in your area for you.

2. Contact your state's Parent to Parent (sometimes called Family to Family) network and get a mentor to help you. They can walk you through Medicaid waivers and insurance and finding specialists

3. Enjoy your baby! Every new life is to be celebrated, and I am sure you already know that. Your baby will bring you so much joy that you will not be able to imagine life without them.   

Wednesday, November 24, 2021

The Importance of Literacy

 I am a huge, huge, HUGE advocate of literacy for children with disabilities. For everyone, really. I know, most people will say "Of course, everyone should be literate" but I am not talking about merely being able to read a few words. 

What I want for everyone is to become addicted to books! I want people to fall so deeply in love with books that they cannot wait to pick up their next novel. When I hear people say that they read a single book the entire year, my head just about explodes. Read a couple chapters every day! 

So real quick about disabilities, then I will go off on another tangent about boys and reading. 

Disabilities and Literacy

Being real here- my older daughter has an IQ of 41. She struggles to learn, period. And reading is a complex skill! It involved decoding and understanding what the words are saying when they are all together. But guess what? She is reading. And writing. In fact, she carries around notebooks and if people don't understand what she is saying, she will write down a few key words (usually spelled correctly!). It opens worlds of possibilities!

Benefits of Literacy:

1. It gives pleasure. It provides endless hours of being lost in a good story and letting your imagination run wild.

2. Literacy gives power. Especially for a non-verbal child, being able to write down what they want is a HUGE tool they can use! 

3. It opens up more possibilities. If I can give a list of things Chelsea needs to do, that helps accommodate for her poor executive functioning skills. Heck, I use a to-do list every day because I can't keep track of everything!

Let's get down to it- how did I get Chelsea to read after the doctors told me it would never happen?

1. READ ALOUD! We read aloud for a minimum of 30 minutes every day. Some days (holidays, etc) it would be a couple hours. We read Berenstain Bears Go To School at least 1,000 times. The Very Hungry Caterpillar was more tape than pages. I had to replace several books after they were too well-loved to be read anymore. 

2. For Chelsea, we never bothered with teaching phonics and the "Top 100 Sight Words". A lot of English doesn't work with phonics anyway, and the top sight words hold NO meaning for a child with an intellectual disability. Words like "the", "or", and "if" are terrible words to teach to a kid who still can't tell the difference between a duck and a chicken. So instead, we used the whole word approach. I made a list of all the words that held concrete meaning for Chelsea, and taught her those. We learned "Mommy" and "Snow White" and "puppy". And she picked up on it SO fast!

3. We model reading and keep books available. At home, we make sure that everyone has books (physical books, not digital!) accessible to them. Everyone has a bookcase in their room, and we have several in our living room. We keep a couple dozen books in the car at all times. I don't care if some of the books get torn or ripped by accident. I'd rather them be read and worn out than pristine and never opened. 

4. Never give up! I started reading daily to Chelsea the day she was born, and really started teaching Chelsea to read when she was five years old. She is now close to 11 years old, and is just now really catching on. So it took years and years of persistent, consistent effort, but it is paying off big time now!


We talked about literacy and disabilities a little. Now let's transition to boys and literacy (major soapbox of mine). There is an assumption that boys don't like to read and don't enjoy school. There are a lot of problems when it comes to boys and books, particularly in America, so let's break it down:

The Problems:
1. School is not designed for boys. Schools are designed for girls. Biologically proven- boys and girls do not learn the same. Don't give me the PC crap- I have taught, and I stand by it- Boys and girls do NOT learn the same, and it is silly to try and teach boys the way you teach girls. Girls will sit and do flashcards. Boys will throw flashcards. As small children, girls will sit calmly and listen to books. Boys will squirm away and run off. Which brings me to point #2-

2. Boys have shorter attention spans. At least when they are young. Parents often lament that their boys won't sit and listen to long stories, and then assume the boy isn't interested in books and give up, or else hate every second of reading to their son because it isn't fitting the picture they had imagined of reading to their child.

3. To go along with #1- the majority of teachers in school, and especially elementary school, are women. Female teachers pick out books that THEY like (not bad ones! I love the ones they pick! But also- I am a girl). Boys and girls like very different books.

4. Boys don't see their dads/ men in their life read. This is a huge, huge issue. If they only see women reading, they will assume reading is just for girls.

My thoughts on solutions:
1. Boys are action-oriented and love to be competitive. When I was teaching my son his letters, I drew letters on the sidewalk in chalk and had him run and jump on them. I wrote words on cards and posted them around the house, or around the playground, and handed him a flywatter and would call out words for him to go swat. Words that HE was interested in. Because who cares about hitting the word "and" when you can hit the word "Gaston" or "sword"?

2. Get some strong male role models that show reading. This could be magazines, audio books, fiction, non-fiction... ALMOST any book out there (more on that in a second). Then have conversations about those books around the dinner table. Or while out fishing. Show them that REAL MEN read. And you will need to build up the "reading stamina" from 2 minutes of reading time until they can sit for chapters upon chapters.

3. Okay- not all literature is equal. I hate the garbage comic books/ grraphic novels/ picture books about butts and poop and farts, etc. etc. Give boys books that are engaging and thought-provoking and that prove to them that real men aren't crude. Real men are intelligent and strong and chivalrous, and don't need to stoop to reading books that encourage poor behavior. Boys will perform to the standard to which you hold them accountable. It is good to have high expectations!

4. Give them good books. This could be books about sports legends, about medieval war machines, about dinosaurs, about famous battles, about rules to games. This could be fiction books with strong protagonists that are action-packed, but for goodness sake give them books and give them often!

5. Surround them with books. I get the line "They will destroy the books if they are left out." a lot, and to that I say "Yep, it will happen. But would you rather have boys that read at the cost of a few books?" Easy answer in my mind! So put books (REAL tangible books! Not the ebook stuff- more on that in a minute too) all over. In their bedroom, in the living room. Put trivia books in the bathroom, have the car seat pockets crammed. Visit the library at least once a week for an hour and browse. Read read read read read read.

6. Stop with the devices!!! This is my other big soapbox. Screens are to candy what books are to vegetables. Of course a kid will pick video games and television over reading! Our brains are programmed to look for the digital stimulation! Kids will likewise pick ice cream over asparagus any day! And did you know that the longer kids are exposed to screens (particularly interactive screens like iPads and video games), the more it stunts their brain development and decision making and executive functioning? So yeah, a little bit of candy doesn't hurt anyone, and a little bit of screens won't hurt. I am all about family movie night on Fridays. BUT- it shouldn't be a steady diet.

7. Read aloud. It is very difficult for kids to read when they don’t have adults reading aloud to them. So read Harry Potter out loud. Listen to audio books in the car (they are trapped and can’t get away, mwahahaha), read picture books! You would be astounded how often parents stop reading to their kids when the child can read themselves. But everyone loves a good story! I am in my 30s and I like people reading to me! Reading aloud helps kids know how to read fluently with a good rhythm. Read poetry. Read non-fiction. Read fiction. If they ask a question, look it up in the encyclopedia, not just google.

And for further reading on this topic for adults, I recommend:
Boys Adrift
Boys Should be Boys
Gender Matters
Read Aloud Handbook
Glow Kids

Thursday, November 11, 2021

Special Needs Mamas- GET HELP!


This week, I went to my endocrinologist. I have hypothyroidism and finally started getting treated for it a year and a half ago. 

He looked at my numbers and meds, then put down his clipboard and did the whole doctor face thing. He raised his eyebrows and said, "Okay, you have to tell me. What are you doing different?"

He went on, "In the last year, you have lost more than 30 pounds, your heart rate and blood pressure are perfect, and you are much happier- I can tell. I know I am good at treating hypothyroidism, but I'm not THAT good. So tell me what it is." 

And I told him, "I finally got help."

I GOT HELP. Real, actual, long-term help.

Two years ago, I was drowning. Chelsea was still smearing poop every day. She had major behavior problems, and Lily had been recently diagnosed and was still a baby. I couldn't see the light at the end of the tunnel. I was completely and utterly depleted, and had NOTHING more to give. I had burned myself out. I had no joy left and lived second to second.

"Just get help!" people told me. To which I always responded "HOW???" 

How on earth was I supposed to find the time and energy to research respite programs, fill out the hundreds of pages of paperwork (I wish that was an exaggeration!), call all the numbers (after hunting them down!), and then follow-up with each agency??? I was just trying to keep up with the insurance calls and ARDs and paperwork and behaviors and therapy! 

How was I supposed to have 5 minutes during the day for myself when I felt like I was just managing one crisis after another? I didn't have time to fill out paperwork and dig up social security cards when I have to watch my kids every second of every day for seizures and still pack therapy around cooking special diets and driving to dozens of doctor visits. 

My children consumed all of me. I cried almost every day, not from sadness of what my kids were going through, but because I was so, so tired and overwhelmed. It got to the point where I got on medication for anxiety and depression. I am one of the most naturally optimistic people out there, but I couldn't take the stress anymore. You can't even begin to describe the burnout until you have lived it. 

But then a year ago...

Chelsea's name came up for a Medicaid waiver program after 5 years of waiting. What does that mean? I will tell you!

That meant that we got her on Medicaid because of her disability and most of her medical bills were covered. But also, that meant that we got RESPITE!!! That basically means I could hire someone to come help with Chelsea for up to 40 hours a week, paid for my the government (note: WAY cheaper than placing a child in an institution!). If I needed help with sweeping the floor, they could do that. If I needed someone to read to Chelsea while I cooked dinner, they could help with that. 

It wasn't an immediate cause and effect. It took several months of having daily help for several hours each day for me to phase out of my flight or flight chronic stress mode. We took all the money we saved from having Chelsea's seizure medicine covered ($1,000/ month AFTER insurance), and I had my hernia repaired and got a tummy tuck to fix my abs after three pregnancies. Do I recommend it? 1,000%!!! I feel SO much better about myself!

After about four months, I was able to get off my depression and anxiety medicine. I started losing weight. I suddenly had the motivation to go jogging again. I found the desire to develop my own hobbies again and wrote not one, but three novels, and have two more in the works! 

My marriage flourished. I started enjoying time with my kids again. I started seeing my friends again. And I have never felt better!

So- all those special needs mamas out there, when you are feeling stressed out of your eyeballs, remember that self-care isn't a long, hot bath. It isn't having two dinners brought in by friends. It will mean serious long-term help. Because what we are doing is HARD. And we need major help! Do not EVER feel bad for needing help! I know it can be hard to find those programs. But they are so, so worth it!!! 

And if you know a special needs mama, please consider doing something to help them. We are tired. So very, very tired. 

And finally, I can't say "Get Help" without thinking of this scene:

Sunday, October 24, 2021

Speech with SATB2 Kids


Many of the most common questions for newly diagnosed SATB2 families center around speech- the prognosis, the recommended treatment plan, and what to ask for in IEPs.

In a nutshell:  

98-100% of children with SATB2 Associated Syndrome also have Childhood Apraxia of Speech. This will range in severity, but is usually severe to profound. All this means is that your child needs a LOT more repetitions of a sound/ word for them to learn it. 

With appropriate, intense, and frequent speech therapy with a qualified professional, progress can be made. There are children with SATB2 who primarily speak and are understood. There are also children who vocalize but are not well understood by strangers, so supplement with AAC devices and/ or sign language. 

Recommended Treatment Plan
The recommended treatment for speech is:
- A minimum of 90 to 120 minutes each week of primary 1:1 speech therapy
- Speech therapist should be highly trained in area of Childhood Apraxia of Speech
- Supplementing with AAC device/ sign language/ PECS system

The full recommendation letter for speech can be found HERE 

The full list of recommendations for all areas (genetic, dental, neurologic, musculoskeletal, etc) affected by SAS can be found HERE

And of course, there are more resources to be found at

Getting More on Your IEP
Now, we get to talk about my favorite topic- IEPs!!! 

To briefly recap for new families- an IEP (in the United States of America) means the Individualized Education Program that the school team helps to design to fit your child's specific needs. 

This is usually a rather lengthy document that outlines:

1) Your child's current ability levels across all areas (PLAAFP)

2) Goals in different subjects/ areas (this could mean science, gross motor, reading, speech, or toilet training or whatever is most important for YOUR child to learn)

3) Accommodations/ Modifications

4) Lists of services and the number of minutes

I won't go into goals/ accommodations/ modifications/ PLAAFP right now. We will save those fun topics for another day. Today, we will scratch the surface on related services and the number of minutes! 

Here is what is SUPPOSED to happen:

a. The parent expressed concern about their child's development, often provides letters of recommendation from professionals familiar with the child 

b. The school team assesses/ evaluates the child and pays special attention to the parent's concerns, and studies outside information

c. The parents and school employees develop a plan to get their child the appropriate number of minutes of services that the child needs based on their disability

d. The IEP is implemented correctly

Here is what USUALLY happens:
a. School gets referral for a child, does standard evaluation

b. IEP is developed before parents meets with school. This is typically a "one size fits all" IEP, like:
    - Half day preschool 3-5 days a week
    - 30 minutes group speech therapy/ week
    - 15 minutes fine motor development/ OT each week
    - 20 minutes APE (Adapted Physical Education) class each week

c. Parent is unaware they can (and should!) ask for more, assumes the school knows best, and signs the IEP. Also they feel a little intimidated by the army of professionals sitting across from them

d. IEP is implemented (sometimes correctly, sometimes not)

SO... What should we do???

In regards to speech for my daughter, I ask for:
- 2 hours 1:1 speech/ week 
- Regular training for myself and the SLPs (3 apraxia specific webinars/ year is my go-to)
- AAC training for all staff that work with my child (bus driver, aides, teachers, everyone)
- 1 30 minute group speech session/ week to practice functionally using language among peers

Many parents get to this point and think "Yes! I want my kid not get more, but how do I get the school to agree?"

Here are 3 ideas to try:

1) Bring letters from professionals! Bring in letters, like the ones from the links above, that back up what you are asking for. Bring in mounds of research (highlight the parts you want them to focus on!) and submit it as peer-edited research. Apraxia-Kids has a great website with a lot of research, and of course 

By federal law, the IEP team HAS to consider any professional data you bring to the table. You can also write up a parent addendum and have them attach it to your child's IEP. In my parent addendums, I will write out what specifically I am asking for and what the school's response is. As a parent addendum, it is automatically a part of your child's record, and can be seen as evidence that you are trying to get what is scientifically proven to help your child progress. 

That way, if you submit a complaint to your board of education, they have hard evidence that you had professionals recommend a certain treatment/ level of treatment that the IEP team ignored. 

2) Be flexible with the SLP. Many SLPs worry about your child missing instructional time, and so don't want to pull them for speech. This is an understandable concern- we don't want them to miss out either! So think outside the box. Could the SLP go with your child to science? Could they have their speech session outside during recess one day and work on asking other kids to play? Could you meet before or after school to get those minutes in?

3) Remember the case law Endrew F vs. Douglas County! This was a 2017 case that determined that children with disabilities should be making "meaningful, not minimal" progress. So if your child is receiving 30 minutes of group speech therapy each week and not making progress (or not making significant progress!), then it clearly is not working and needs to be changed. The definition of insanity (according to Einstein) is doing the same thing over and over yet expecting different results. 

This case law is a HUGE win for students with disabilities! No longer are we supposed to accept tiny bits of progress, but we can expect more of the schools! 

You can read all about Endrew F v. Douglas in my favorite article about it HERE. Also, if you haven't spent an insane number of hours reading the blogs on, run over and take a look! They blog about every topic known to special education families! 

Sunday, January 10, 2021

Intelligence Does NOT Equal Worth

Guest Post By Leslie Alder

The way we talk about people who are disabled matters. I recently heard to a person talking about their disabled sister-in-law. She is 70 years old and has the mentality and functionality of a five-year-old. 

This person said, "She's definitely handicapped, but she is SO smart. She is NOT dumb." They then proceeded to recount all the stories to prove that. Like how when they drive back to her hometown, she knows exactly where to turn to get back to her childhood house. And she knows all the months of the year, and all the holidays in order.

Listening to this person, it seemed like they were so desperate to prove to the world that their family member was worth existing, and worth respecting despite her disability BECAUSE OF her intelligence; that her intelligence had redeemed some of her lost worth.

Why do we think that intelligence equals worth? 

What about my cousin who suffered a traumatic brain injury when she was 1 year old that put her back at a newborn state? She remained in that same state 11 of the 12 years of her life. She was developmentally a 3 month old. She was not "smart." She was disabled in every possible way. But you wouldn't say, "Yes, she is disabled *sigh* AND she's dumb..."

No one would argue that a newborn is less valuable because he doesn't show signs of intelligence. They contribute literally nothing to society. In fact, they drain a lot of resources and demand a lot of time from their caregivers without producing anything tangible in return. But we love and cherish them and absolutely recognize their worth. 

It frustrates me that we have this value system of 'You are more valuable if you're smart' and 'You are more valuable if you are successful' and 'You are more valuable if you can produce things'.

If your contribution to the world can be measure in a tangible way, then you are valuable, and we like you. But if your contribution to the world cannot be measure in a tangible way, then we question your worth.

It is a human brain thing.

Our brains have evolved over thousands of years to keep us safe, warm, and fed. Those things are most easily achieved when we are in a tribe with other people. So everything we do is passed through the filter of "Will this help me stay in the tribe or will this get me kicked out?" 

We try to figure out where we are on these scales and we construct to make sure that we're not going to be voted off the island. The scales of Wealth, Intelligence, Beauty, Strength to name a few. 

So as long as we can find people that are beneath us on these scare, we feel a little bit safer in our tribe.

But I think it is also heightened by our specific Western culture because we value the American dream. Producing and making something out of your life, and raising yourself above where you came from and contributing to society in a way that makes money. Therefore, if your contributions cannot be assigned a monetary values, you are "less than". 

This is unfortunate, because it limits us from really seeing people with disabilities for who they are. We decide ahead of time that their contribution are less valuable than those of the typically developed person. We miss out on the fact that there are a lot of ways to contribute to society that cannot be reflected monetarily. 

The love and sacrifice and the total Christ-like compassion and empathy that my cousin brought to her family cannot be measured monetarily. 

Her contribution to the world during the 12 years she was here was more significant than mine in a lot of ways. 

As her mother said, "We love our little ones not because they might become someone great someday, but because they already are fantastically amazing!"

I am all for learning and developing and progressing as much as we are each capable. I believe it is in our nature to create and learn and connect with each other. We are happiest and feel most fulfilled when we are living and working up to our potential. 

But we work for those things because it will make us happy. Not because it will improve our worth. We came here with our worth intact. We don't need to earn it or prove it to anyone. 

So I wish we could just flip a switch and delete this whole idea that you have to prove someone's intelligence in order to give them value. 


Parable of the Talents | St. Michael Catholic Church

A parable is told in the New Testament about a master who is leaving to travel. Before leaving, he entrusted each of his servants with his property while he would be away. According to the abilities of each man, one servant received five talents, the second had received two, and the third received only one. 

When the master returned, he found his first two servants had doubled their money while the third had only hidden his and had no increase. 

We tend to focus on that third servant- how his lack of doing was a sin and we caution against being a slothful servant. 

But what is more interesting to me is what happens to those first two servants. The first is given 5 talents, and the second is given 2. That alone speaks volumes about how some of us come to this earth. We don't all get the same talents, the same experience, the same resources, or the same abilities. 

But they received the same exact reward because of what they did with what they had. Even thought the second servants best efforts (4 talents) didn't even measure up to where the first servant started (5 talents), they both received the same inheritance. This teaches me that we cannot use others to determine our standing in society or contribution. There is no scale. 

We don't improve ourselves in hopes of being better than a certain number of people. We just try to be better than how we came. 

Sunday, October 11, 2020

Benefits of Having a Child With A Disability

Disclaimer: This is meant as a light-hearted post. HOWEVER, there is the rule that, if you do not have a disability or a child with a disability, you are not allowed to contribute any jokes or benefits. 

There is a lot of awful stuff I have to wade through as a special needs parent. But here are some silver linings!

1. The Parking!

Ooh-la-la, I LOVE the parking!!! Every time we pull up to the zoo, or at a busy parking lot, I throw that parking pass up and have everyone in the car yell "Thank you Chelsea!!" for the great parking spot. Spacious spots right by the entrance, room for the giant stroller, everything. So awesome!

2. The "Jump the Line" pass

Speaking of our giant, special needs stroller, I LOVE skipping lines! At the airport, at amusement parks, all over! People see Chelsea sitting in that bad boy and rush to roll out the red carpet, give special treatment, and get us right to the start of the line. No complaints here!!! At school when I did car pickup for Chelsea, I always got to skip the super long car line and go to the special needs pickup, and they would load Chelsea right in after I waited behind the other 3 parents who did pickup and BOOM we were out of there!!! 

3. Door to Door Bus Service

When I didn't want to drive Chelsea to and from school anymore, the school sent the bus. Not the run of the mill, wait on the corner with other kids bus either! No, no- this was the awesome bus with extra friendly drivers, seat belts, and a personal aide for Chelsea that stops at the end of our driveway and waits for Princess Chelsea to come out of her castle and load up. After school is over, they drop her off right at the end of the driveway again. Soooooo convenient! 

4. No Swearing

I never have to worry about Chelsea using bad language or swearing/ using crude humor because she is mostly non-verbal! So ha-ha!!!

5. No Teenage Rebellion

Along those same lines, I never have to worry about Chelsea sneaking out to drink, meet boys, smoke, drive recklessly- nothing! So HELLO peace of mind on that front!

6. Never Boring

It is never, ever boring at our house! There is always a therapy or doctor appointment, a meltdown, therapy practice at home... We always have something to do!

7. Automatic Out

Having a child with a disability is like holding an ultimate trump card. I can get out of just about anything I don't want to go to (which as an extrovert is rare, but has happened on occasion). So I can always message and say "Oh, sorry, but Chelsea just had a seizure" or "Chelsea had a rough day and needs to rest"

8. Feeling Popular

Chelsea sees me and will probably always see me as the coolest, most awesome person ever (except maybe Grandma) and she ALWAYS wants to spend time with me, no matter what we are doing. It is kinda nice to know I will never be alone (again, see "extrovert"). I will always have someone who wants to road trip with me, go out to dinner with me, go on a walk with me. Best friends for forever. 

9. Getting Smarter

Okay, I have never been a super smart person. I worked hard and got good grades in school, but having a child with a disability suddenly catapults you into a whole new world of education. You are the doctor researching and specializing in your child's condition, the nurse administering all the daily care, the lawyer advocating for your child's rights, the teacher helping educate your child and creating a personalized education plan. 

You are the occupational, physical, and speech therapist all at once doing therapy at home. You are the behavior therapist teaching social skills. The dietary needs chef managing to cook gluten-free, dairy-free, nut-free meals that are also healthy and geared towards the correct carb/ protein/ fat ratios needed to manage seizures. 

You become a rockstar parent and dedicate time to parent intentionally every day. You become an insurance and government program expert. You become a 5-star time manager and juggle your job, child's needs, doctor appointments, therapy appointments, playdates, housework, IEP meetings, and date night. 

So now I feel like a freaking genius. Move over Einstein, moms with special needs kids coming through!

10. Getting Workouts

I get workouts ALL the time! I am going to be in awesome shape, just saying! From chasing after my child eloping, sprinting the distance of the house to catch her when she is falling, and holding her down during a meltdown so she doesn't hurt herself or others, I feel like I get a body-builder level workout every day! 

11. You have instant friends

Many, many people are uncomfortable asking about disabilities. Totally normal- we get it! You don't have that experience to be comfortable with it. But no filters for us! We can stroll up to another parent and launch right into, "Hey! My child has a disability too! How about that new law about IEPs, huh?" Instant ice-breaker and we can be having heart to hearts 5 minutes after meeting. 

12. You Learn What is Most Important

On a more serious note, having a child with a disability is exhausting but so rewarding! My perspective on life has shifted so now I can focus on what really matters and take time to enjoy the moment more than I would have if I had only had typically developing children. 


Tuesday, October 6, 2020

Compensatory Education

What a roller coaster it has been the last several months! With COVID-19, schools being closed, therapies often being closed... It has been a whirlwind year for sure! Hopefully by now things are starting to get settled into a routine for your family, even if they still won't be back to normal for awhile. 

Today, I wanted to talk a bit about how to get compensatory education because of the pandemic.

First and foremost: If you want to get compensatory services, keep your child enrolled! I kept Chelsea enrolled even though she wasn't doing any "school" from the district except a brief 10 minute visit with her classmates to say hi each day. I let the school know that I received their offer of virtual education, but since it was not an appropriate option for Chelsea, that I would let all of her compensatory education minutes accrue. 

Here is why I say don't withdraw them unless you intend to go full homeschool for an extended period of time: If you reenroll your child later on, any regression during this time period will be placed squarely on you. The school will say it is 100% your fault (in nicer words, I am sure) and that your child won't get any "extra" services.

So, what is compensatory education?

Basically, this is to "make up" for lost services/ time. This could look like:

- A social skills summer camp

- X amount of hours for selected therapy during the school year, after school hours, extra time during the summer, etc.

- Reimbursement for educational expenses (keep receipts!)

- An extended period of time in special education for persons aging out during the pandemic

How do I get compensatory education?

1. Call an IEP meeting. As the parent, you can call one anytime you want 

2. During this meeting, request it. Schools are actually pretty good about offering it, in my experience.

3. If they say no to compensatory services, don't worry about making a lengthy, detailed argument. Just say "I understand your position, but please document that I am disagreeing and will not agree at the end of this IEP meeting". This forces the school to reconvene the meeting within 10 days. 

4. If after a couple meetings, they are still holding ground, you can send a letter to your state board of education. Check out any parent advocacy group local to your state, they will often have a template for writing up a complaint. (hint: any clear-cut violation of special education will get resolved STAT when a complaint is filed, but then the team will be very wary of you)

Bonus Tip:

Any complaint and requested compensatory education has a statute of limitations on it. Plain English- you have one year from the beginning of the complaint to get this requested/ taken care of before the complaint will "expire". 

Did You Know??

The idea of compensatory education is actually not from the IDEA special education law! It is all based off of case law. So if you go into a meeting and can rattle off a couple tidbits from the 2003 G vs. Fort Bragg Schools, chances increase that your IEP team may give you what you want or wet their pants.