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Inclusion

This is more of a feel good post than anything but I think it is important. 

If you have someone you love who struggles with loud noises, you know the 4th of July in the U.S can be difficult. Sure, you want to see fireworks but you have this friend who just cant cope. Well, I have some coping strategies that I’ll post later but in the meantime....

My very good friend, David, wanted to spend the day with his friend who had a child with autism. He asked me what kind of activities they could do so that this would not be a problem. I suggested noise canceling headphones and fireworks. Perhaps a place where they could watch fireworks from a car, that might help too. When it came down to it, the child was not feeling the fireworks at all. David suggested they just go back to his house and all watch a movie together. 

They all had a great time, David got lot’s attention from his new little friend and everyone was happy. I know this made a difference to his adult friend. 

The lesson.

Do things to include your friends who have different needs. You don’t need to make it a national holiday but I know that this memory is very important to those that he spent the evening with. 

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Caregivers Need Care.

I think we all know how hard it can be when you are a full time caregiver to an individual with special needs. You might have a child with autism, ADD, ADHD, or any developmental or physical disability or be the primary care provider for someone like this. Regardless of the age, it is important for you to take time to yourself as well. Mental health is just as important as physical health and when you are not at your best, it is the person you care for who suffers.

I will never make excuses for individuals who do outrageous things and take measures that are beyond the scope of human decency. For example; the case of mothers who kill those that are supposed to be under their protection because they felt overwhelmed. However, nobody should have to get to the place where they feel this is their last option. 

I’m here to talk about YOU though, that typical caregiver who just needs a minute for someone to listen. Maybe you are not even a caregiver but the support system of a caregiver. Perhaps even the parent of one of these special people. There are some things that need to be said that become tattooed on your brain. 

If you need help, speak up. If you are asked for help, give what you can.

What does this mean, exactly. Well, sometimes it is just a difficult day and you need 5 minutes to say whatever you need to say without someone trying to “Solve your problem” for you. If you are a caregiver and need one of these minutes, make sure you are communicating your needs. 

Be specific. State, “I just need someone to listen, please don’t solve this or judge me.” Indicate you are just venting. 

Ask for help before it get’s to the critical point. Don’t wait until you are beyond your tipping point, try to anticipate that it is going to be a bad day and create a network before hand. Maybe say something like, “I know that I’m dealing with a lot of personal issues and today could set me over the edge, can I count on you to be available for a chat?”

If you are experiencing these “Bad Days” with great frequency, it could be time for a mental health day. Truthfully, if nobody has told you yet, you need to take these days before you become overwhelmed. I know, easier said than done. What I mean by this is, set up a network in advance to be able to take a day off. Before you get to the point of emergency, start interviewing sitters, ask special needs educators if they know of a trusted individual, reach out to other special needs parents and ask who they trust. Start setting aside whatever financial means you have to be able to hire a sitter for a day. Perhaps you have a friend whom you are close with. Start a network of other trusted caregivers who might be able to assist each other when one of these days hits. You need to know that you will need a mental health day and you need to create a network of individuals you can count on during a time when you are not in breakdown mode.

If you are the support network for someone who is a caregiver, understand that this is a tough tough tough tough tough tough tough life.��

Think on times when you needed to call in sick to work because you could not deal. Try to remember a time when your personal life was in upheaval and you were less than your best at work. Now imagine that someone is literally giving your their life, it can be a lot of pressure. 

Please, understand that I am not here to guilt you into anything, if you can not actually manage something do not feel bad for being honest. However, if it is only a slight inconvenience, come on, don’t be a dick. Someone had to care for you at some point in your life and you can pay that back. Nobody has gotten to adulthood without a group of people setting aside their needs for yours. From your parents and educators to the physicians and nurses who have cared for you. Maybe you had a friend who would just listen to you vent about work or a romantic partner. We have all been dependent on someone else to be O.K at some point. So, what can you do?

Offer without being asked if someone needs to take a few hours. You can say something like, “Hey friend, I don’t have anything going on this weekend, what if I watched (BLANK) while you took a nap?” or “I’m running by the store on my way home, did you need me to pick up anything and drop it off?” It can really be that small.

If you are feeling like you want to do some community service, try helping those you can see where it makes a difference. Helping friends who have children with special needs can be just as rewarding. You can say something like, “Hey, what if I took the kids to the aquarium on Saturday?” or “I know you are swamped, could I come over and cook dinner for you?” and maybe don’t judge when the house is a mess.

Schedule these breaks in your month just like you would schedule a shift at a soup kitchen. This kind of service often goes ignored but it is just as necessary and it still makes you a good person. Heck, you can even post on social media if you want to be a part of something organized. Keep in mind, November is National Caregiver Month and November 13th is Caregiver Day but you can participate in this all year round. 

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My friend with autism

There is a really great author named Sarah Stup who has non-verbal autism and she communicates with the world via an electronic device. She understands things that are said to her and has a fully functioning mind but does not respond verbally. I love pointing people to her blog as the reason for inclusion and it really opens some minds.

Why individuals with autism make great friends.

If you have a friend with nonverbal autism, hold on to them tightly because they really are great at keeping secrets and they are great listeners. 

If you have a friend who is minimally verbal you will likely get only the really important things in their life because they were worth it enough for them to tell you about it. 

If you have a friend who is high-functioning it means they likely lack the ability to tell you what you want to hear. Often times you get their honest feelings without any sugar coating. 

If you have a friend who is lower functioning, it means you can be transported to a wonderful world where things are fascinating. Helping them can make you feel like you have made a difference and you will have a friend for life. 

Things to consider if your friend has autism. 

It might not look like they are paying attention but they very well may be. Often these individuals do not enjoy eye contact but distracting themselves with other things and staring off can actually help them focus on what you are saying. It may also take them another minute or two to respond to you, they are just formulating the exact words they want to use in their head. 

Sometimes your friend can be overwhelmed and needs to take a break, that is fine. It does not mean they do not like you, they just take in so much information that sometimes it can be exhausting for them. They like you so much that they are willing to do this just to be around you so consider it a blessing. 

Regardless of how much going out and interacting is difficult for them, often times they want to be around their friends and be included. Just because they operate differently does not mean they do not enjoy being with other people.

Other things of note.

Autism can often be lonely and isolating. Sometimes these individuals do not understand when they are being made fun of or mocked. Sometimes they struggle to understand who is truly a friend and who is not. Remember this and be their advocate. If you see someone is befriending them for their own entertainment, say something and offer them true companionship. Show them kindness and patience or, at the very least, protect them from physical harm. 

Frequently, individuals with autism are targeted for bullying or violence because they are very vulnerable. Speak up if you see any individual being targeted, abused, assaulted, or mocked. At some point they will realize what is happening to them and their feelings are just as real as any neurotypical individual. These are not aliens but humans and they understand fear, sadness, loneliness, joy, love, and safety. If you can offer friendship, it can change their life more than you know.

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What does a meltdown look like?

.It’s always really interesting to me how people say things like, “She doesn't look like she has autism.” usually prefaced with me saying that a child I’m working with has autism. The truth is, there is no one look that autism has. So, depending on how bad my day is I will either say, “Well, autism is a spectrum so nobody really looks like they have autism” or something like, “O.K, what does autism look like?” 

It can sound mean but it does make them think, you don.t really know what autism looks like. If autism had a telltale appearance, it would not be so hard to diagnose so really, not having an appearance has made diagnosis a little more difficult. It also makes public meltdowns just a little more difficult to spot. 

Consider that next time you are walking through a public area and you see a child fighting with their caregiver; pulling and squawking, crying and screaming, they might not need a lesson in parenting or etiquette from a total stranger, they might just need compassion and privacy. 

Children or adults that have public meltdowns are not necessarily being bad, they are just so overwhelmed with everything happening they don’t know what to do. Imagine you are taking an exam and it is totally quiet then someone starts flashing the lights on and off while simultaneously tapping their nails, humming, and clicking their pen, it might drive you mad, right? Well, imagine it is a hundred times worse. For individuals with autism, just their clothes rubbing against their skin can be painful so the fact that they made it out in public is often a miracle. 

What can you do?

That is actually a difficult question to answer because each caregiver is different. Each individual might have different reactions to strangers, some are totally terrified by them. If you see a caregiver trying to balance shopping and their child, it is O.K to ask if they need help and offer to take their bags for them. The most appropriate response might just be to keep your distance and ignore the situation. If you see an opportunity, it’s O.K even to inform the caregiver to do whatever they need to do and reassure that nobody is judging them. This might not be true, but thinking you have someone who understands nearby can make you feel better. I have known individuals who even address onlookers gawking at a situation and if you feel up to the task, that is O.K too. 

What if my child is having a meltdown?

Remember, your child is the most important thing in that scenario. Getting them calm and back to center is what you should focus on. As for those around you, statistically there is someone who has been in your shoes nearby and they are thinking that this situation is probably outside of your control. Do not worry about other people watching, you will never see them again. If you are in a plane or another small space where people have paid to be there remember that they deserve peace when you can give it to them and do your best but if you can’t... We were all brats at one point in our life. 

I often see parents with their children on planes that pass out ear plugs with a note saying that they might have issues. You certainly do not owe it to anyone to do this but you can if you would feel more comfortable. More and more considering recent interactions with airlines, I would be hesitant to do this, but it is always a judgement call. It would certainly give those around you some sense of awareness but nobody has to announce their “disability” to anyone. 

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Anything you can do I can do.... Too.

So frequently people ask me if a child can do a task because they have a neurocognitive disability and generally they mean well but there are some things we need to address. 

Most children do not need physical adjustment unless they have a physical disability as well. Consider they may not understand all the verbal instructions given so there needs to be an adjustment in how a message is delivered but they usually do not have any physical impairment. 

How can I deliver instructions?

One of the best ways to deliver instructions is verbally first. There is a good chance an individual understands you but does not speak back. Next, try a visual aid like a print out or a video of what is expected. After that, show them step by step and then let them try on their own. You should try to resist the urge to do these tasks for them because they do have to learn. It will make your life easier and their life better if take the time to let them learn how to use a zipper, pour milk, do laundry, and other things that are age appropriate. 

Exceptions

Like anything else, there are exceptions to these expectations. We have exceptions and contradictions and you just have to accept it. There is a reality that often times these delays go hand in hand with an intellectual disability. This does not mean that these individuals cant still learn things, you just need to consider their ability. Most importantly, these individuals still often love interaction, inclusion, and affection. So, include them and make them part of your group, it will enrich your life as well as theirs. 

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Sensory Friendly Halloween

Halloween can actually be a nightmare for those with sensory processing disorders, and it’s not a joke. Consider bright and blurring lights, screams, hordes of brightly colored neon blobs running in all different directions. In addition to this, you are wearing something that requires you to constantly pick at it, pull, scratch, and in general feels like sandpaper against your skin. 

So, if this impacts a person you know and love, there are a few things you can do. We know that just staying uninvolved in a treasured holiday isn’t always an option, though it would be the easiest solution. The foundation of our remedy will come from the costume itself. 

Costume

Soft and silky costumes can absolutely help individuals who struggle with seams and scratchy fabric. For those who can still fit toddler sizes, there are soft minkey costumes lined with a silky fabric. These are the plush costumes under the brand “Hyde and Eek” and run 20$-25$. There are choices from monkey to unicorn to flamingo rider. 

If your superhero still insists on that polyester superhero costume, there are options for you as well. By combining some therapeutic clothing with a costume, you can have your badass costume and comfort too. Companies like Kozie Clothes, Skinnies, and Fun and Function, feature underclothes that offer a silky feel, compression, or tagless features. 

Or say SCREW IT and just throw on a shirt that says, “This is my Halloween Costume” and embrace the fact that this holiday is supposed to be FUN!

Trick or Treat

This can be so tricky, do you see what I did there? Individuals, with autism especially, do better when something is familiar and sometimes become frustrated with new activities. If you make the choice to go trick or treating, there are a few techniques that can be used. 

Try a “dry run” by going to your neighbors and rehearsing the trick or treating with someone they know. Some parents with non-verbal children have opted for a sticker detailing this individual has autism. Now, this resolution is absolutely not necessary and you owe no person an explanation for an individuals behavior but some parents have expressed that it relieves the expectation of a specific behavior. Also, look for homes participating in the Teal Pumpkin Movement for non-candy treats. There is also the option of sound isolating headphones that can help eliminate the screaming and scary sound effects. Lastly, try getting out earlier while there is still daylight and fewer participants to cut down on over-stimulation. 

Most importantly, do not expect too much from those who experience sensory processing disorders, social, and communication disabilities. Keep it fun and as soon as the individual is finished, let it be over.