Boredom vs. Structure: Is One “Better” for a Special Needs Child?

There is a lot of parenting buzz about letting your kids be bored because only then will they tap into their imaginations and learn to be self-reliant. Childhood boredom can lead to many wonderful things like invented games, improvised plays and backyard expeditions. Then again, many children with special needs need structure. Some get very anxious when they are unsure where to go and what to do. Others get lost in time and distractions in ways that are not beneficial or can get up to activities that are destructive or unsafe. Throughout this article please understand that when I refer to unstructured time I never mean for it to mean unsupervised time. Safety is crucial! Also, this is not about boredom in school – this is about the summertime, weekend, hanging out at home type of boredom. So how do you balance your child’s need for structure with the healthy benefits of downtime?

I was faced with this dilemma of schedule vs. free time on only the fourth day of summer break, when my special needs child dramatically threw herself on my bed and sighed, “I’m bored.”

As always, take the unique needs of your child and your family into consideration. If you work, if your child is in a summer program or camp or if your child has a caregiver this may not all be up to you. You will need to get input from your child’s team to see how he or she tolerates unstructured time before you can decide how much boredom to allow at home.

Even when it seems like I am letting my kids hang around the house doing nothing, I always have a secret schedule in my mind and am always watching the clock and listening to the sibling rivalry. Sometimes I have to step in and redirect, sometimes I can let it play out. Sometimes I have to force them all to unplug, or go outside or read.

If your child needs structure and scheduling, try building some imagination time into the daily agenda. Start small, maybe ten minutes, and build the time up as your child can tolerate it. Knowing there is an end time may also help the child feel less anxious about free time.

Some children have trouble making choices. In this case you can schedule something like reading time or art time, but allow your child the choice of what book to read or what art materials to use. If that is too overwhelming, you can give your child two or three options and let them choose. Then stop giving the options. Eventually you can work up to giving your child bigger choices, like reading time or art time. Even using the phrase “play time” instead of “free time” may offer the child a hint about appropriate choices during this time. If the idea of unstructured time is very overwhelming to your child, brainstorm a list of things they could do during free time, then post it somewhere or keep it in a notebook so you can consult it as needed. You may even want to make a Boredom Jar so the suggested activities will be randomized when your child pulls one out.

As always, if unstructured time doesn’t work for your child right now that is fine, but as our kids grow up and we try to teach them to be independent you can revisit it at a later date.

Service Dogs in Schools? What Do You Need to Know?

There are many questions and concerns involving the use of Service Dogs by children in schools, but it is becoming a recurring theme in the news of late. So I decided to write a post about it to better educate parents in case this becomes an issue in your school. What are the pros and cons? Do the pros outweigh the cons? Are there risks to your child both physically and educationally by having a dog in the classroom? These are all topics I would like to discuss with you, because I think they are important.

So I think the first step needs to be precisely defining what a Service Dog is, and what their role is for a person with disabilities. And I think it is important to explain that not all disabilities that require a Service Dog are visible.

That being said, in layman’s terms, a Service Dog (or SD) is a dog that has been specifically trained to perform certain TASKS that allow the owner with disabilities the ability to live a full and independent life. What do I mean by ‘tasks”? Let’s break it down into obvious and not-so obvious disabilities (visible –vs- invisible) that allow a person to function and perform what we call ‘daily living skills.’

Obvious Disabilities:

• Someone in a wheelchair may have a dog that pulls the wheelchair for them.
• Someone who has difficulty walking due to certain medical conditions (such as Multiple Sclerosis or Cerebral Palsy) may use their dog to lean on to get them from one place to another. (Also known as a Mobility Support Animal)
• Someone who is blind may have a guide dog.

Not-So-Obvious Disabilities:

• Someone who suffers from seizures may have a seizure alert dog. Under ‘typical’ circumstances, they look just like everyone else and you would never know they have a debilitating disability. But this dog can save their life. The dog cannot stop the seizure from actually happening, but by ‘alerting’ their person (often with a touch or a whine or bark) that a seizure is imminent…. it allows the person time to get themselves into a safe position (ie: lying down or out of the shower or tub) so when the seizure hits, they do not fall from a standing position, causing a possible head injury, or drown in a shower or tub.
• Someone who suffers from diabetes may have a diabetic alert dog. The dog is trained to ‘alert’ their person if their glucose levels becomes very low, or too high. Unlike the seizure alert dog, where the dog cannot physically stop the seizure from happening, by alerting their person that their sugar levels have changed, it enables the person time they would not have had before to check their sugar levels and correct the situation before it can become dangerous.

Put yourself in the shoes of the parent of the children who suffer these disabilities (and many others….. there are just too many to list) and ask yourselves this: if you had a child with some of these issues, how much comfort would it give you to know that they have a constant ‘early detection device’ with them at all times?

I have touched on some of the life-saving ‘pro’s’ of the child having their Service Dog with them. But here are a few other benefits:

• Integration into everyday life: A child with disabilities can easily feel ostracized or different from other people. This may make them shy, insecure, fearful, and at times unable to talk to or connect with their peers that they see as ‘normal’. They are more open to taunting and bullying. I mentioned in a previous post how I was once so painfully insecure, I did not know how to approach or talk to people. What I did not mention was that had it not been for my Golden Retriever Radar, I doubt I would have made it to or through my first Narcotics Anonymous meeting! In my mind, it was just one more group of people that would reject me! But amazingly, walking in with my dog broke the ice. People approached ME and asked me questions, which opened up that line of communication I so desperately needed!
• Independence: If you are anything like me, asking for help is never an easy thing. I like to be self-reliant. So imagine having to constantly ask for help with things, and what a toll that might take on your self-esteem and confidence daily? Now imagine having something that suddenly allows you to do for yourself what you previously always had to ask others to do for you? Can you imagine the sense of freedom that would give you?

I want to share with you here a wonderful short video that can show you first-hand (From the perspective of both a parent and a child) how a service dog can drastically change the life of a child.

So what we have focused on until now are the positives for the parent and child WITH disabilities. So if you are a parent who has a child with disabilities, this post may open new doors for you!! After reading this, you may have never thought of getting a Service Dog for your child, and this may have shed some light on some of the wonderful advantages your child may enjoy by obtaining a Service Dog! If you are interested in learning more about obtaining a service dog for your child, there are numerous organizations that specialize in training Service Dogs specifically for children such as Canines For Kids and 4 Paws for Ability.

But what if you do not have a child that suffers from disabilities, how can having a SD in a classroom affect your child?

First off, it is important to understand that the training that goes into a Service Dog is quite different from the training you would get for an everyday pet. It begins the same way, with basic housebreaking and commands, but after that, it becomes very different. Depending on the type of Service Dog required, some Service Dog training companies such as CCI (Canine Companions for Independence) or the Guide Dog Foundation begin training at eight weeks old or younger. The pups are raised by people or families known as ‘puppy raisers’ where they learn things like the basic commands, leash manners, and are brought into numerous different situations to acclimate them to things like sudden loud noises, (such as cheering at a ball game) flickering lights (such as in a movie theater) constant action (like in a mall or store) or even sudden applause (like at a show.) Then at 18 months, they are brought back to the facility where they came from for extensive training, where they learn specific tasks, like pulling a wheelchair, turning lights on and off, picking things up when they fall on the floor, etc. I will add here that an any given time, the facility may determine that a dog is NOT suitable for this type of work, (they may be a bit too energetic, or may be easily distracted…. all traits that could be very dangerous for the person depending on them!) and their SD training ends there. After about a year of this extensive training, they are finally matched with their eventual owner/handler and for the next six to eight months, the dog/handler team work together at the facility on the challenges the specific owner has that requires the Service Dog’s assistance.

Some Service Dogs, again, depending on the situations the dog is needed for, may be owner taught, or the owner may have hired a professional trainer to make their current dog a Service Dog. Back in 2017, all Service Dogs were required to pass a Service Dog Public Access Test to be recognized as a SD. Although the requirements are a bit less strict these days, many still receive specialized training, similar to that which was previously required. If you are interested in learning more about this test, and the training dogs receive to pass it, you can watch this video on the requirements to pass the test.

So safety-wise, your child should not be at risk having a Service Dog that’s received training by a professional trainer in your child’s school, because the standards for training a Service Dog are quite high!

However, there are some potential risks to your child health-wise. For example, if your child has severe allergies to dogs, this may make it very difficult for your child to be in an enclosed environment (such as a classroom) with one.

And educationally… it may cause some issues for your child as well. Let’s face it….having a dog in a classroom (even an extremely well behaved dog, doing nothing but lying quietly next to the child’s desk) can be a major distraction for the first few weeks or months…. especially for a child who is easily distractible to begin with. (Think about the words to Mary Had A Little Lamb…. “It made the children laugh and play to see a lamb at school.’)

And lastly, we don’t want to forget about the child who is deathly afraid of dogs! Especially since most dogs trained to work with children tend to be on the larger size for stability reasons.

So how can we make this a win-win situation where everyone is happy? By following some simple guidelines right from the start:

If it is your child’s dog:

• Make sure the school is aware that your child will have a Service Dog with them before the term begins.
• The school has quite enough to do ensuring the safety and well-being of every child in their care. It is not their responsibility to walk, clean up after, or take care of the dog. So you must make sure that either your child can fully tend to their own dog (taking them to potty and cleaning up after them, giving them water, etc.) or make sure to arrange for yourself or someone outside of the school staff to take care of them periodically throughout the day.
• Prepare your child for different scenarios that may come up and coach your child on how to handle them. For example, kids will be curious, and do not know how to ‘sensor’ questions the way adults learn to, so your child may be asked, “What’s wrong with you that you need a dog?” Explain that the child may not necessarily be trying to be cruel, but probably just curious. You can also prepare your child on what to do if someone comes up to pet the dog, or asks to pet the dog. (It might help to have a “Working: Do Not Pet” patch on the dog’s vest.)
• Be aware of your child’s rights to have their dog with them in case you come across any difficulty and you need to advocate for your child. Be willing to be flexible and accommodating if another parent has a kid with severe allergies but is stead-fast on their child staying in a specific classroom for whatever reason. Remember, it is not about who is right and who is wrong here; it is about working together for the best outcome for all children involved.

Suggestions for the school:

• Send out notices to the parents regarding the presence of the dog several months prior to the start of the term. You can even ask the parent of the disabled child if they would like to create the first draft: it will save you hours of worry about wording it correctly and help them to protect their child’s privacy…at a minimum they’ll appreciate your making the effort. Also, sending notices early will give you time to identify any potential conflicts (i.e. if a child with severe allergies or a fear of dogs is scheduled to be in the same class). This will give you ample time to move one of the children into a different classroom prior to school beginning, or to allow parents the opportunity to ask any questions they may have.

Note: keep in mind the ADA (Americans with Disabilities Act) states: “Allergies and fear of dogs are not valid reasons for denying access or refusing service to people using service animals. When a person who is allergic to dog dander and a person who uses a service animal must spend time in the same room or facility, for example, in a school classroom or at a homeless shelter, they both should be accommodated by assigning them, if possible, to different locations within the room or different rooms in the facility.”

• Hold an assembly or at least a classroom meeting at the start of the year to explain to the children a few important guidelines and boundaries regarding the Service Dog. For example, the fact that the dog is not a pet, but that it is working, and the importance of them not petting or distracting the dog from its job. I find it helpful to explain to children that in this case, the dog is really no different than a wheelchair or crutches would be for a child. I have also found that many children are very excited and proud of their dogs, and the things their dog can do for them… so ask the child if they would like to participate and help talk to the children about their dog. This may also avoid a situation like I mentioned above…. Questions being asked out of curiosity that may hurt a child’s feelings.

If you have a non-disabled child that will be in a class with a SD:

• Talk to your child in advance about there being a Service Dog in the classroom to help a child who needs assistance. Ask for their input if they feel this would make it too distracting for them, and really listen to their answers. Remember, the parent of the disabled child is looking out for the best interest of their child by having the dog; you have to look out for the best interest of yours! It is not a matter of not caring about the other child, but remember, you are always your child’s best advocate! And your child has rights too.
• Encourage them to ask you if they have any questions, and if you are not sure of the answer, spend time with them researching the answer online.

In conclusion, I will wrap this up by saying that it is important to remember that every single child matters! Each child has their own set of strengths and weaknesses that make them special and unique. If we all work together, we can create a safe, loving, caring, and happy environment and future for each and every one of them!

Looking Back: A Special Needs Child’s Struggle for Freedom

As our kids go back to school, I thought I would remind you to look back and appreciate all the struggles and victories you and your special needs child have faced. As I have mentioned, my child was never supposed to walk or talk but she does all that and more. Even if she had never made those strides (pun intended) we would love her and be proud of her, because the end result is not important – it’s the fight. As a a parent I have also had to fight – the school, the system as well as my own worries and expectations. Watching my child and other special needs children battle for their own type of freedom gives me even more admiration for all who are fighting every day in this country to keep us free.

Here is an excerpt from a piece I wrote for a fundraiser for The Chime Institute, which runs my child’s charter school based on inclusion. It was performed at Chimeapalooza as part of a multi-media celebration.

When I heard from the Regional Center that there was a CHIME Infant and Toddler Program for my baby daughter with special needs, I almost cried. Then, when I heard that I could bring along her typical twin brother and that it was free, I think I did cry. The Infant and Toddler Program was 65% special needs kids and 35% peer models. I loaded up my sixteen month old twins and explained that yes, he was walking and that no, she was not – and maybe she never would.

But she did. She graduated out of Regional Center Early Intervention, and the parade of therapists coming to my house stopped. From there the twins went to the CSUN Lab School – aka The Child and Family Studies Center. This time the program was 65% typically developing children and 35% of the program was saved for children with special needs with support from CHIME. I had to explain that yes, he pretty much knew how to use the potty and that no, she didn’t use the potty yet…and maybe she never would.

But she did. Preschool came and went, and then it came time for the lottery for the CHIME Charter Elementary School. I found my way through the maze of residential streets south of the boulevard…and a mysterious orange orchard…and handed in their applications. Maybe I was kidding myself. I knew the odds were stacked against us and that most children don’t get in, but maybe she would.

But she didn’t. But her older brother did! And that meant…the twins were in, too! I requested that they stay together in their kinder classroom – only the first of many, many requests I would make of the CHIME administration – and so off they went, still together.

One day on the way home from pick-up with all three of my kids in the car my kindergarten-aged son asked an innocent question, ”What is the big deal about special needs kids? I mean, why does CHIME talk about them so much?”

“Well…” I answered, tailoring my information to be age-appropriate, “CHIME believes in inclusion, which means that even though the kids can all do different things you can all learn together and be friends. So each class has some special needs kids in it. Like your class has three…”

He cut me off. “No, we don’t. We only have two.” He rattled off the names of his classmates with more obvious special needs. My daughter nodded her agreement. I felt my upper lip break out in a sweat.

“Yes, honey,” I said gently, “your class does have three special needs kids in it.”

“No it doesn’t!” he repeated adamantly, reminding me of his two classmates.

I jumped off the cliff. “The third student with special needs is your sister.”

“No she isn’t!” he objected as if I was playing a silly joke on him.

And there it was…living, breathing proof that the experiment that is CHIME is working so incredibly well. They didn’t see themselves as different from each other, …and maybe they never will.

Sensitive Santa for Special Kids: Coming to a Town Near You…

Back in 2010 when I first wrote about the Sensitive Santa visiting time at some malls in Southern California, it was a very new idea. I am so happy to report that now these experiences are becoming widely available around the world. Along with Sensory Friendly Films by AMC as well as concerts and plays, individuals with autism can now begin to expand their social experiences in a comfortable setting.

Gentle or Sensitive screenings and performances usually have lower sound levels because many people (of all ages) are bothered by loud music or voices. Lighting – or lack of lighting – can also be a challenge for sensory challenged folks, so those levels are also adjusted. Limiting the tickets offered also controls the crowds, which can be overwhelming for folks with special needs and their caregivers.

Sensitive Santa programs allow special needs children of all ages a calm and relaxed way to visit with Santa.

As I write this a Google search has yielded 108 MILLION results for “sensitive santa” from places like Toronto, Arizona, Georgia, Minnesota – and those are all just on the first page! If you are looking for one in your area, many of these events are offered through local autism groups.

The meeting of Pope Francis with families affected by autism opened up the discussion about religious practices and studies and special needs kids. In some parts of the world people who are different are treated with scorn and hidden in shame, but more modern societies are finding ways to welcome all abilities into the fold.

Whether it is visiting Santa, lighting the Menorah or gathering together to watch a holiday special or read a special book, these traditions help build relationships and create special memories for everyone involved. Wishing you and your family a happy holiday!

Photo credit: LyraWhite; CC license

Stimming and Special Needs: The Good, The Bad and the Flappy

How do you react when when your dog greets you at the door with a wagging tail or your cat cuddles up to you and purrs loudly? You might think it’s cute or that the animal is just expressing its feelings. Do you ever get angry? do you ever think your pet is acting weird? Of course not, it’s just the natural way they use body language or their voice box.

Now think about how most people react to a child having a tantrum, kicking and screaming. How do people respond when a child with special needs is flapping their hands, spinning a toy car’s wheels or banging their head against a wall. Some people get downright angry about these behaviors, especially when they happen in public. But the child is just expressing his or herself, using the body language and sound that come naturally. While some of these may be harmless, many of these behaviors may be considered annoying or distracting and others can be downright dangerous.

Let’s go back to our beloved pets. A puppy naturally needs to chew, so it finds a shoe and chews it to bits. The puppy isn’t trying to destroy your property or do anything to harm you personally, it is just a teething baby that needs to chew. A good pet owner will simply hide all the shoes and introduce chew toys, substituting a more appropriate way to fulfill the puppy’s need to chew. A cat needs to scratch, it is simply instinct as well as a way to mark territory and sharpen claws. Unless the human wants shredded furniture it’s a good idea to provide a scratching post and train the cat to use it instead of the couch to satisfy its need to scratch.

So how can we allow our special needs kids to express themselves without getting injured or doing damage to themselves or to property? Just like with our animal companions, we substitute a more appropriate behavior that satisfies the same need.

• If a child seems to need to jump, a small trampoline might be just the ticket.
• If a child needs to chew, fashionable chew-able accessories are available.
• As for hand-flapping, if it is an expression of happiness or excitement and it is not injuring the child, anyone else or anyone’s property then why change it?

Photo provided by Kfagan6; CC license

What Does Independence Mean For Your Special Needs Child?

As you gear up to celebrate The Fourth of July, take a moment to think about the idea of independence. How far has your special needs child come thus far? How many things can he or she do independently now that seemed out of reach a while ago? No matter how small, be sure to celebrate each speck of progress. And the next. And the next. Eventually those specks can build something amazing. There was a time when everything my daughter touched would be knocked down, dropped or spilled. Today she has a good 95% success rate!

Take a moment to look to the future. What short and long term goals do you hope your child will achieve toward independence? Now may be the time to start planning for the next phase of your child’s life, the next transition. Will your child be able to live on their own? Are there group homes in your area? If they will be at home, what are the ground rules? I dread the day my daughter starts talking about dating…but not as much as her father is dreading it!

Independence can also be interpreted as freedom. What freedom has your child been able to master? It is hard for any parent to release control of their child and watch them become their own person. How much of the leash have you been able to let out? Of course it’s heartbreaking to watch your child fail or fall, but that is part of learning. Let them pick themselves up (figuratively or literally) and encourage them to try again. Sure, it would be easier and faster if I did my daughter’s chores for her, but I hope that some day she will be on her own. She may never want to do any of it, but one day – for whatever reason – I won’t be there to do it for her so she should at least know how to do it.

If you need some tips, check out my article about making fireworks more manageable for special needs kids from last year on Pediatric Safety.

What will independence mean for your child?

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