Rare Disease Day: Show Your Stripes!

 The last day in February is set apart as Rare Disease Day!!! Why? Because every four years, the last day is the 29th of February, the rarest day of all! 

The symbol for Rare Disease Day is a ZEBRA! Want to take a guess why?

If someone hears hoofbeats approaching from behind, they automatically assume it is a horse. When individuals with rare diseases go to the doctor, oftentimes the doctor will assume their condition is due to a more common diagnosis, leading to the "Diagnostic Odyssey" during which families flit from one doctor to another, searching for answers that never seem to come. 

Other people say that the symbol of a zebra shows that just as no two zebra's stripes are exactly the same, so are no two diagnoses exactly the same. Every case is unique. 

What can we DO for Rare Disease Day? 

Show your support for the members of the rare disease community by doing one or more of the following:

1. Wear zebra print and take a picture!

2. Post on social media explaining why you #careaboutrare

3. Take time to learn about a rare disease today! Most affected individuals welcome genuine questions. We want to raise awareness, and are not embarrassed by people asking us to help them understand!

4. Donate to a rare disease based non-profit. I always choose the SATB2 Gene Foundation! 

5. Serve someone with a rare disease today. Bring them a meal or treat, write them a note expressing why you appreciate them, or meet up to talk! We all need friends, and having a rare diagnosis can feel lonely. 

Whatever you choose to do, choose kindness and inclusion!

Don't Make A Fuss! It Isn't a Big Deal

 I had an interesting experience recently. On a disability advocacy group I am on, someone posted about a hotel for a vacation their family had booked.  The website claimed that it was accessible, but when the family arrived, the hotel was not accessible for their child in a wheelchair and the family had to change all of their plans last minute to accommodate. All of their meticulous planning on location and travel time to the destination from the hotel were thrown off, and they spent most of the first day dealing with it.

 

But wait- that wasn’t even the worst part! Most families with a disabled family member are used to being highly adaptable, and they rolled with it (pun intended). They filed a complaint with the OCR (Office of Civil Rights) and then posted in our group to vent about lack of accessibility to people who would understand.

 

BUT THEN- someone commented and said that if the family was still able to have a vacation, so end goal achieved. They asked why the family would make a fuss and file a complaint; no harm had been done long term, so it wasn’t worth making a big deal about it, and that they should just be grateful that they got a vacation.

 

First, I was floored by that comment. Mostly, I was shocked that on a group dedicated to disability advocacy, a member of the group would be the one to say that! I have heard similar comments before; it isn’t a mystery that when you haven’t personally dealt with accessibility issues, it can be hard to understand the gravity of the situation. It isn’t about what you get in the end. It is about inclusion and accessibility along the way.

 

Let me try an illustrate with an analogy. Using this person’s same logic, I could say that during the time of segregated schools in our country based on skin color, black people had no reason to fuss, because they were still able to attend school. They should just be grateful that they got an education, right?

 

Wow, feels gross to think of it that way, doesn’t it? THAT is what we mean when we say that we want our children included. THAT is how it feels when businesses effectively say to our families, “You are not welcome here because of your disability. Go be with your own kind.”

 

Dramatic? Maybe. But that is how it feels to us. If anyone is ever struggling to determine if something is discrimination or not, swap out disability for race or religion or sex and see how it sounds. “Catholics can’t use this bathroom” or “Girls can’t take woodworking in school,” or “Asians aren’t allowed at this hotel.”

 

My children with disabilities are not in wheelchairs, so I don’t navigate with the physical disability/ mobility aspect of accessibility often, but this mentality could be applied to any accessibility issue- “Don’t make a big fuss about this; it isn’t a big deal. Don’t make waves because of a minor inconvenience.” 

 

Example- my daughter is about to go into Junior High. In junior high school here in our school district, students are allowed to choose an elective- band, choir, theatre, etc. I waited for weeks after the new year to get the course selection page, but nothing came home, even after I knew that other students in general education received the form. I finally got hold of my daughter’s teacher to ask about it, and was told that Life Skills students are always automatically signed up for art. 

 

I was angry. How dare they strip my daughter of her ability to make a decision for herself? It is assumed that “normal” kids can choose for themselves, but clearly *insert sarcastic tone of voice* children in life skills would only be interested in art, not like they can do anything else other than color pictures, right? Again, feels gross to say it like that, and to assume that kids with IDD can’t do anything other than scribble and don’t have varied interests. That belief is called ableism, folks, and lets have none of that!

 

Children with Intellectual Disability have just as passionate of interests as any other person. They just tend to have better attitudes and may not realize what they are missing out on, so they are easy to push around. Also, for the record, my child HATES art, so why on earth would she want to take that?

 

I sat down with my daughter and I wrote out a list of all the options for electives offered at the school (that I looked up online because I still hadn’t been provided with a form). My daughter picked cooking straightaway and without hesitation. When I contacted the school to say that she wanted to take Home Economics, I was treated (by many people, but certainly not all) like my request was a HUGE inconvenience. Without coming straight out to say it, their message was- if only I would just accept what was offered with a good attitude, I would make their job easier. 

 

The overpowering message I receive when people moan and groan about me standing up for my child is that they don’t think my child isn’t worth the effort to be seen. It is more important to them that they don’t have a deal with an additional fifteen minute conversation and sending a couple emails. Who cares if it comes at the expense of one ten year old girl’s happiness in sixth grade? It saved them a phone call TODAY.

 

(Brace yourself- *here comes Snarky Sarcastic Mary*) Woooow. I can’t imagine how difficult it must be for you to take an extra fifteen minutes this week to set up reasonable accommodations for a disabled child. Thank goodness you don’t have to deal with this every day. Imagine if that disabled child was your little girl and you felt like you had to get out of bed every morning with ten times the amount of passion and drive a “normal” person has in order to advocate for your kid at the school, with insurance, with doctors, with government programs, in the community… 15 whole minutes this week? Poor baby.

 

Okay, that was a little mean there. *Real Mary comes back* In reality, I do know most people at schools and in special education are there because they love these kids and want what is best for them, and sometimes their hands are tied. People are creatures of habit, and I do understand that it is easy to fall into the trap of doing the same thing over and over, not out of malice, but out of habit. It gets comfortable knowing what to suggest for the next round of sixth grade IEPs. 

But lets have the courage to break the cycle and really examine our actions to see if we are operating based on “that is just the way things are done” or if we are truly seeking to help each person with disabilities reach their fullest potential and live a fulfilled life. 

 

Long rant over now. Yes, families with disabled kids/ family members can get loud. We can be incredibly obnoxious and people can feel like they are being pecked to death by ducks because we wont. go. away. But we only want our children to have EQUAL rights to non-disabled people. Yes, that might make someone slightly uncomfortable because again, we are creatures of habit and don’t like doing new things. But please understand that I would not be able to sleep at night if I saw injustice being done to my child and did nothing. So I WILL say something, and this IS a big deal to me. 

Sexuality and Abuse in ID Population

 

About five and a half years ago, I wrote up a blog on Abuse Prevention based on a workshop I went to. I had the opportunity to attend another training recently, put on by the SAFE Alliance (Stop Abuse For Everyone). For simplicity's sake, I will be focusing on the Intellectual Disability population when talking about sexuality and abuse. (Prepare yourself, this can be a heavy topic)

SEXUALITY MYTHS

First, let's dispel a couple myths about individuals with disabilities and sexuality:

MYTH: If people don't talk about love/ sex, they are not sexual

Not true! There are lots of different ways that desire is manifested. 

MYTH: If parents don't think their child is ready to date, they don't need sex education

False again! Sex education needs to come based on a person's biological age, not their intellectual age. Biology happens to us all!

MYTH: Separating boys and girls during sex education is the factor that will make students most comfortable.

Okay, this one tricked me during class. I wasn't sure about it when my class was asked, and the answer is actually false! The universal #1 factor in what made students comfortable during sex education is how relaxed the instructor is. Once that was explained, I agreed. 

MYTH: People with disabilities don't have sexual desires

That is right, FALSE yet again! Very often, the disabled population is de-sexualized. People assume that if a person has an intellectual disability, there are no sexual desires. But that is wrong. Remember what I said about biological age? Still true! Those hormones will kick in, regardless of your IQ. 

MYTH: People are safer when they don't date.

Wrong again. The disabled population is at an extremely high risk for abuse. I went into that a bit more in the old blog, and will touch on it later. 

So, with all those myths, what DO we do? How can we keep our kids with Intellectual Disability safe? 

1. BUILD RELATIONSHIPS!!! Far and away the best thing to keep your child safe is to help them build friendships and healthy relationships with trusted peers and adults. Everyone needs a community support network to rely on. If a person with a disability only has one or two people in their life, and one of those people abuses them, who would they turn to? Create and maintain strong relationships and friendships! Victims of abuse are MUCH more likely to confide in a trusted adult as opposed to a counselor or crisis hotline.

2. Encourage self-determination! Self-determination means the belief that you can and will control your own life. It is fueled by the knowledge that you have options available, and can make choices for yourself. If you know that you are not stuck with only one option and have the agency to choose something else, you will feel empowered to determine the course of your own life.

3. Teach Self-Advocacy! One of the reasons as to why people with Intellectual Disability are so easy to abuse is the compliance training that they are taught. 'Obey people giving you instructions, always.' This philosophy, well-meaning and intended to reduce problem behaviors, also harms a person's ability to identify boundaries and advocate for themselves. Self-advocacy is crucial for safety. Give them the ability to say NO and respect it!

3b. Note on NO: What if my child is saying NO, but they still have to do something? What if they have to take a bath, clean up toys, or have a diaper changed? It is for their own hygiene/ safety, and I do expect them to do their chores. What then?

In that situation, acknowledge you hear their no, then explain the reasoning behind what you are requiring of them, and let them know ahead of time what you will be doing "I hear you saying no, but I have to wipe your bum to get all the poop off so you don't get sick." Encourage their participation as much as possible to help them develop autonomy. 

4. Practice Physical Affection Boundaries: Let your child dictate when they are willing to give consent. This goes for hugs, kisses, touching, sharing, borrowing, and secrets. Ask for permission for these things "Do you want a hug?" to give them the opportunity to say yes or no with optional things, particularly related to physical affection, privacy, and personal boundaries. Healthy relationships never take away someone's choice. Boundary building doesn't happen over night, so you need consistent practice, repetition, and time.

Cool/ Not Cool Game

I am excited to look at the curriculum that the SAFE Alliance is putting out soon. We trialed an easy game to play with kids to help them learn what some healthy boundaries are. You introduce a scenario, and then have your kids do thumbs up for "Cool" or thumbs down for "Not Cool."

Some sample situations:

• Your romantic partner says "Don't eat cake or you will get fat!" (not cool)
• Your job coach yells at you because you made a mistake at work (not cool)
• You are having a bad day, and a friend asks to give you a hug (cool)
• Your friend slaps your butt and when you get upset, they say it was just a joke (not cool)

Practice situations like that and role play what to do. 

ABUSE AND DISABILITIES

Now we get into the heavier topic- abuse. 

Scary Stats:

• More than 70% of people with IDD have been victims of abuse
• Most who were abused experienced that abuse on more than 20 occasions
• Less than half of those incidents were reported, and of those reported, only 10% of reported incidents led to an arrest
• Women with IDD have a 7x higher risk of being sexually assaulted
• Men with IDD have a 1.5x higher risk of being sexually assaulted
• 97-99% of victims knew and trusted their abuser
• 44% of victims had a relationship with the abuser specifically due to disability (hired caregiver, aide, etc)
• Abuse can occur anywhere, but is especially high in institutional settings

Why Such a Higher Risk of Abuse?

• Learned compliance
• Lack of privacy
• Lack of awareness
• Isolation
• Extended periods alone with one person

Indicators of Sexual Assault, Abuse, Exploitation (Youth)

• Signs of physical abuse- headaches, stomachaches, bruising, etc.
• Increased fear and distrust
• Change in mood or appetite 
• Loss of skills
• Denial
• Angry outbursts
• Anxiety
• Sleep disruption
• Nightmares
• Distracted/ distraught
• Sudden change in appetite 
• Refusal to talk about a secret
• Writes/ draws/ plays of a sexual nature
• Suddenly has money, toys, or gifts without reason (part of the grooming process)
• Think of body as repulsive or dirty or bad
• Exhibits adult-like sexual behaviors, language, and knowledge
• Sudden mood swings

Tips for Preventing Assault:

• Maintain a 2 adult present rule for your child. Write into your child's IEP that you need two adults within viewing distance of your child at all times 
• Get training for yourself
• Coordinate a training for your child's school/ staff. If they know you are aware and watching for signs of abuse, the likelihood of abuse decreases drastically (because there is nothing scarier than the parent whose disabled child has been wronged)
• Build a community of strong, healthy relationships for your child
• Help your child practice healthy boundaries

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.   

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!

BOYS AND LITERACY

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

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:

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:  

Prognosis

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 satb2gene.org

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 satb2gene.org. 

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 wrightslaw.com, run over and take a look! They blog about every topic known to special education families!