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. 

 

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. 

I Don't Know How To Act Around People with Disabilities

I wish I could say that I am the type of person who always just loved being around people with disabilities, that I was drawn to them and felt an inner connection and always knew just what to do and say to have those Hollywood moments of inspiration for everyone in the vicinity. 

But I'm not. 

Truth be told, I was always a little uncomfortable, nervous even, when I had to interact. 

Not to say I actively disliked them- not at all! Prior to Chelsea's diagnosis, I felt bad for them. I had compassion for them. I wanted to help them. But I didn't know how to behave and some of their behaviors were unexpected, or else "not normal". And that made me feel very uncomfortable. So I avoided them. 

Being Uncomfortable

One instance when I was 18 or 19 stands out in my mind. I was talking with a neighbor when her foster daughter came out the door. The 15 year old girl was fairly mobile, but walked very awkwardly and had an obvious intellectual disability. She made loud cooing noises and acted like she wanted to hug me, and had drool all down her chin. One eye was looking at me and the other was pointed off to the side.

I had no idea how to behave. This was way outside my comfort zone. I clammed up big time. Should I hug her? Tell her no? Back away? Talk to her? But why talk to her if she can't talk back? Would her mom be offended if I did one of those things? Which one?

Yeah, I had no idea what to do. My neighbor politely excused herself as I stayed rooted to the spot with a frozen smile in place, and she led the girl back inside. I felt almost sick. Then I was completely disgusted with myself that I didn't even know how to handle a simple situation and was scared of a girl who clearly wasn't a threat or in full control of her actions. 

I think a lot of people feel this way. We see a person with some sort of noticeable disability, and feel the inner drive to be kind and helpful.  

But then that inner voice chimes in "What if they are embarrassed if I notice? How much do they understand? Would it be insulting to them if I offered to help? I don't want to offend anyone! 

Is there even anything I can do to help them right now? I want to treat them like any other person, and I want to be kind and friendly, but I am so darn uncomfortable right now and I want to get away. Someone else would be a better friend to them than me anyway."

So we remain silent. We freeze up. We pretend we don't notice the abnormal behavior. Not out of disdain for the person, but because we are unsure of what to do. 

You Aren't A Bad Person!!!

For so long, I felt like I was this nasty, horrible person for not wanting to be around special needs kids. I felt selfish. I felt like a coward. I felt guilty for feeling uneasy.

 

I saw other people interacting so easily with the special needs population and feel inadequate in comparison.

I didn't want to be phased by people with disabilities, but I was. Was I a bad person? 

NO!!! It is a totally normal human response. We do that with all sorts of things! Haven't you ever seen a person who says "Ew I won't eat THAT!" but has never tried the dish before? And we say "Try it, you may like it."

Same principle here. People with special needs aren't disgusting scary people. They are just different. Something new! 

People are scared of what they don't understand. 

Don't beat yourself up for being human. 

I have been around someone with a disability almost 24/7 for 9 years, and I still find it challenging to interact with some people who have disabilities. Because by golly, I just never can anticipate what each one will do! They don't always follow social protocol, and that is what our "typical" brains are trained for!

  

So What Do I Do?

It is simple, really. The best way to get used to people with disabilities is to be around people with disabilities. 

Say hi to the man with Down Syndrome at church. 

Invite the mom with a child with Autism over for a playdate. 

Choose the checker that is a little slower scanning items who has a disability and talk about the local baseball team. 

Once you start looking, there are a lot of people with disabilities. And they are pretty awesome people who like pizza nights and jokes and just want friends. 

Just like you. 

So let's be kind and friendly. That is a great place to start.

What Should I Say? 

Now, there are soooooo many different kinds of disabilities, and just as many personalities to go along with each one! So there is never one "perfect answer" of what to say or do. 

But for those people who are kind and want to help but aren't sure how, here is what I have learned:

1. These kids are just kids. My little girl loves being told that she has such a pretty dress, or is a wonderful helper for her mom. She likes eating ice cream and playing with friends and watching movies. She is over the moon when she gets invited to parties. She wants to be seen as Chelsea, not as just a disability. 

2. Just say hi. It can be lonely being a parent. It is even lonelier being a parent of a child with special needs. Remember the scenario I said above? How people want to say something then don't for fear of offending someone? 

I see the awkward glances and you turning your head quickly to pretend you aren't staring. No judgement here- I notice other people with disabilities too! 

And I go through the same dialogue in my head. "Should I say anything? Maybe they don't feel like talking. They might think I am weird or creepy if I go up and act like they are my best friend. They look preoccupied anyway. What if they are nervous about covid?"

Just a quick "Hey! Your daughter's glasses are super cute" or "She has the most beautiful smile" goes a long way. 

3. Most people don't mind the questions

I never, never, never get offended by sincere questions. My child means the world to me, and I love telling people about her disability, because they immediately have more patience with her, and also, knowledge is power! I want people to know about the different kinds of disabilities out there. 

I can probably count on one hand the number of times someone has been actively rude about my child with a disability. If somethings comes across wrong, more often than not it is just a misunderstanding. 

Normally, the person asking is very timid in asking. I don't bite, I promise! And the only person Chelsea ever bit was her dentist, so odds are you will walk away unscathed. 

Ways I ask:

"Hey! I noticed your son is using a communication device! Technology has come so far. Can you tell me what program he uses?"

"Your little girl reminds me of my favorite cousin, they laugh the same exact way! May I ask if she has a diagnosis?" 

"I saw you signing with your child. That is incredible! Did you always know sign language or did you learn for your child?"

And if you don't want to ask about the disability, guess what? That person is still a PERSON, not just a disability. So talk about whatever you would with a "normal" person. 

The First 2 Years: 4 Things That Help Development

We have two daughters with SATB2 Associated Syndrome. Our youngest recently turned 2. Here is some of what we have learned works and what doesn't works by lots of trial and error on our part. 

1. FISH OIL!!!!

Okay, there aren't many things that I can give a quick and easy answer on, but this is one of them! I first gave fish oil a try when my oldest was 3 years old. I had been to a national Apraxia conference where it was highly recommended, so started, and shortly after was when Chelsea started developing speech. 

SO, when our second daughter was born, we started giving fish oil at 4 months old with her first baby food. I know other factors came into play, but Lily has done VERY well in comparison to Chelsea. She rolled, sat, and crawled on time, and walked at the later end of the "normal" range, AND had her first word at 15 months. I personally think fish oil helped.

2. GET EARLY INTERVENTION!!!

I really wish I had gotten intervention earlier with Chelsea. I didn't get anything until she was about a year old, and then just took minimal services until she was about 2. She was my first and I didn't want to think that anything was wrong. I was so sure that with just a little physical and speech therapy, she would catch up.

When Lily was diagnosed at about 6 weeks old, I called our state early intervention within a week (after I had cried an ocean worth of tears) and demanded that she get seen. Even though she didn't qualify based on her ability level (hard to evaluate a newborn as being delayed!), I pushed the medical diagnosis and brought in forms saying that 100% of SATB2 kids have delays, etc. 

I think maybe they gave me services at first because I was such a psycho. But I didn't care at all! I don't want to look at my girls in 5 years and apologize for not getting them the care they needed because I was afraid to make a few waves. 

3.  DO THERAPY AT HOME!!!

It isn't enough to have therapists come every week to work with your child. YOU have to get on the floor and do the therapy with your child. Pull up a list of developmental milestones on Pinterest, or pull out that dusty copy of "What To Expect The First Year" and list out goals to work on. Or get ideas from a therapist. 

I try to set aside a minimum of 6 (10-15 minute) increments each day at first. We would work a little on physical therapy, occupational therapy, reading aloud, sign language, and 2 speech "sessions". (Pro tip: Make a physical to-do list every day!)

And when we had Lily as a baby, I tossed ALL of her swings, jumpers, baby carriers, everything. She was being held or was having tummy time, or was sleeping. Hooray for trunk control! 

4. Get a Private SLP EARLY!!!

All state-run early intervention programs I have interacted with won't recommend speech therapy evaluations until 2 years old. They say you can't know until then if your child is delayed. Here is my advice: ignore that and RUN to get a good SLP TODAY!! 

To compare: 
Chelsea: We started Chelsea with state EI speech at 2 years old a couple times a month, then in private speech weekly at 3 years old. She got her first word at 3 years old. 

Lily: State EI had to be threatened (not really, but close) to give services to Lily when I requested them for Lily at a year old, but the speech therapist that came was dreadful. I got Chelsea going with weekly private therapy visits at a year old, and she got her first word at 15 months. 

So there you have it! 4 ways to give your SATB2 child a head start in the first 2 years of life!