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.