Inclusion

This summer the alarm is set for 5:45 AM. Not by choice. I am not a morning person in any way. I enjoy sleep.

But I get up every day at that time to make sure my son Ben gets his medicine, gets dressed and is in the car by 6:15 to drive 10 miles, to the Jr/Sr High School to take part in the summer sports weight program.

Young men and women regularly get up early to work on their fitness so they can become stronger athletes.

Ben does not participate in everything. He is not a fan of the parking lot warmups, though sometimes I see him doing the stretches by the side of my car.

This is our second year of summer weights. They go every morning at 6;45 Monday through Friday. After warmup they split up and half go into the weight room and the other half go out to the football practice field to do agility drills.

Ben loves the weight room. He joins his group when they go outside but usually would just sit on the picnic benches at the nearby concession stand to watch. The grass is usually wet, the tractor tire that they flip is really big. I get how this is uncomfortable for a 15-year-old with Down syndrome and autism. Really a sensory nightmare. But he pushes through, because he loves the weight room, the loud music, and the time with peers.

While he is doing the weight program, I try to get in a good walk around our small town. A day not long ago, as I walked toward the school, I noticed Ben’s group was outside. I looked to the concession stand to make sure Ben was in his usual spot. He was not. Sometimes he would run around the concession stand, when the others were doing something that was too much for him. I waited but he did not come around from the other side of the building.

Mom instinct kicked in and I stared scanning the area for him. It did not take long to find him. In the middle of the group of boys. I was happy that he was with his peers instead of watching from the sideline. Two by two the boys would lift and flip the tire 3 times, then move to the back of the line. Ben was getting close to the front. I watched to see what would happen.

Ben was paired with a senior. One who did not need a second person to flip the tire. But as the two boys ahead finished their flip, Ben moved up and helped flip the tire. Ok, he didn’t help much. But he was there, and he touched the tire. Something I was not sure I would ever witness. It brought tears to my eyes.

One year and eight days. That is how long it took from the first time Ben witnessed the tire flipping to feel comfortable enough to participate.

Inclusion. We talk about it a lot. Ben often can not do exactly what his peers are doing. Especially things that are challenging or sensory demanding. But once he becomes comfortable, he enjoys some of the activities as much as anyone.

When we ask Ben if he wants to try something new, he will almost always say “NO!” without really listening to what we are asking. Our policy has always been that he has to at least try new things. If he still does not like it after 2 weeks, he can quit. This generally applies to things we think he will like. Like track. The first 2 days of the season are always rough, after that he loves it.

Something similar happened with choir. When he moved to junior high and got a new vocal teacher, he would not sing with his peers. He would go, learn the songs, participate in some of the activities, but not actual singing. Then at the beginning of this last year he decided it was ok to sing along. It took a full year.

Imagine how many things our kids miss out on if it takes them a year to get comfortable. Things that they enjoy. Things that they need help accessing, but don’t know how to ask. I know I am guilty of giving up after a much shorter time.

Weights last summer were the same. He loves the weight room, so he puts up with the rest. Until he got comfortable with the rest. By the time he is a senior, I fully expect him to be doing it all. But that is a couple years from now. We have lots of time to practice.

That is what inclusion in school is really all about. Time to practice, in a setting that is slightly more controlled. Time for peers to practice being around Ben too.

If I had not had two older boys go through the summer weight program, I am not sure I would have even thought to take him. Sometimes we as parents must be creative when thinking of ways our kids can be included.

Ben gets the benefit of a set schedule (something I struggle with) a good workout, time with peers. I get reason to not sleep in during the summer, time to walk, work on my computer, listen to a book. Any way you look at it, it’s a win.

Except that 5:45 alarm part.

#DownSyndrome #Autism #Inclusion #DSASD #bensbrigade

• "Judy Heumann, called the "mother of disability rights" passed away at the age of 75 onMarch 4th. Heumann famously said
"I want to see feisty disabled people change the world."
• "Judy was the first teacher who used a wheelchair in New York City.
Judy fought for the rights of disabled school teacher, suing the local school board of education. This is a huge step not only for public school teachers but for all professions everywhere. Disabled people deserve to be in every occupation in every level of leadership."
• "Judy changed the landscape for disability & employment laws.
Judy was the first teacher who used a wheelchair in New York City. Judy sued the local school board of education when they didn't allow her to teach in her chair.
This is a huge step not only for public school teachers but for all professions everywhere. Disabled people deserve to be in every occupation in every level of leadership. Judy set a precedent.”
• “Judy worked on a federal level to make sure disabled people had equal benefits and opportunities at work.
Judy organized a 10-city protest to encourage President Nixon to sign the Rehabilitation Act (Section 504). This act ensures that individuals with disabilities will have equal opportunities and benefits in the workplace.”
• “Judy revolutionized equal access to education. Judy helped develop legislation that became the Individuals with Disabilities Education Act (IDEA). IDEA makes sure that students with a disability receive a Free Appropriate Education, which is designed to meet their needs."
• "Judy worked towards independence for disabled people Judy co-founded the World Institute on Disability in 1983. The World Institute on Disability is dedicated to helping disabled people live as independently as possible.
• "Judy Heumann's tireless efforts, protest and constant work helped establish the Americans with Disabilities Act.
The Americans with Disabilities Act is a civil rights law that protects disabled people against discrimination in all areas of life."
• “Thank you Judy. Rest in Power.
We will not forget the work you did to change disability rights forever." ##Disability #disabilitycommunity
#DisabilitylsDiversity #disabilityawareness
#DisabilitiesAwareness
#DisabilityAdvocate #disabilitysolidarity #DisabilityReframed #disabilitysupport
#invisibledisabilities
#inclusionmatters #Inclusion
#InclusionRevolution #ChooseTolnclude
#accessible #AccessibilityForAll
#disabledaccess #AccessibilityMatters
#accessforall #Disabled
#DisabilitiesAdvocate
#DisabledButNotReally
#RememberingJudyHeumann #ripjudyheumann #RIPJudy
#judyheumann #Activism

Source: @DisabledEliza

#disabilities #Disability #MultipleSclerosis #ChronicIllness #Depression #newlydiagnosed #MightyTogether #Caregiving #Support

There are many things that you can do to help and support the disabled community and promote inclusivity. As a SEN parent, here's a few of my favourites:

1. Ask questions, never assume
If you don't know if my son can join in with that game of football, or access that building or find that situation too overwhelming....then ask.
Just ask and we'll find the best approach together. Assuming he can't is ableist and prevents all of us from getting into the habit of making adaptions to include everyone.

2. Remember YOUR discomfort is momentary
If you find my son's behaviour, noises and physical movements difficult/frustrating/annoying, then remind yourself that that feeling is temporary. You are able to regulate your situation and emotions far more easily than my son. So remove yourself, have a word with yourself and remind yourself that those feelings were temporary. My son lives with that level of discomfort and difficulty all the time.

3. Practise empathy
Every time you navigate yourself with ease from A to B, or approach a new situation/place/ person without any prior planning or anxiety, enjoy the feeling, appreciate your able body and mind and then take a moment for all of those that can't.

4. Change your perspective
Comfort and ease comes before image. This could mean the clothing he wears, how he moves, his stimming or other self-regulating behaviour. I don't care if my son is in a bedtime onesie laying on the tarmac to keep himself calm and if I don't care, then neither should you.

5. Speak up
Change only happens if people want it to. If you see things that aren't inclusive, whether that be a lack of ramps or accessible toilets or an environment that doesn't cater for all then speak up. Ask questions, write to management, enquire on their accessibility policies. The more we ask the more we draw attention to things that can and should change.

6. Research and open up your world
Open up the echo chamber of your social media and entertainment to include people different from yourselves. Desensitise disability so that you are able to engage with the SEN community without fear or embarrassment. Education leads to awareness and acceptance.

7. And above all else, be kind!
That includes to yourself. If you get it wrong and feel embarrassed, be kind to yourself and then try again.

#SpecialNeedsParenting
#specialneedsfamily
#Inclusion
#disabilityawareness