Special Needs Parenting

Autism Awareness Day Ideas

I recently wrote about our family’s experience with gluten free with regards to our son’s Aspergers. To that end, I spent all of Thursday making gluten free freezer meals with a friend. I will be posting more about that and sharing some of the recipes we used in a few days.

We celebrated our own Autism Week. Einstein has Aspergers which is a form of autism. Tomorrow, he and I will be doing the Autism Speaks Walk.

The symbol for autism is a puzzle piece so the sensory bin was so easy to make. I put a plea out on Facebook for mismatched puzzle pieces and my friend A. responded with two big bags filled with all shapes, colours and sizes of puzzle pieces. I threw them into two bins and called them our sensory bin for the week! This was for sure the easiest sensory bin I’ve ever made!

We used the puzzle piece in other ways too such as making paper puzzles and cardboard ones. We discussed how Aspergers makes some things a challenge for Einstein and makes some things easier. We watched some YouTube videos geared at explaining autism to kids.

For our lunch on Friday, we made a special a la Einstein plate for everyone. It had the puzzle piece tribute in the form of cheese and it was all orange, Einstein’s favourite colour.

We started learning about human cells and we made one out of Jello and candy. Before we did that, the kids filled out this worksheet:

Our nucleus, nucleoplasm and nucleolus was supposed to be a plum, but I didn’t label the plums with a “science experiment” sticker and The Husband ate them! It was kind of funny to tell him that he had eaten our nucleus! In desperation, we used an avocado pit instead. The plastic wrap represented the cell membrane, the Jello was the cytoplasm, gummy fruit was the golgi complex, round sprinkles were the ribosomes, gummy worms were the smooth endoplasmic reticulum, gummy worms rolled in sugar were the rough endoplasmic reticulum, a gumball made up the vacuole, and the mitochondrion was a large peanut M+M.

We went to the Calgary Zoo as a family. It’s a wonderful zoo and their new Penguin Exhibit is now open, making Granola Girl very happy!

There was a zookeeper there who explained to the kids all about the different types of bears and had interesting things to show them such as claws, skulls and scat (droppings).

The kids thought it was super cool!

I’m reading…

The Lucky One

Codependant No More

My Life and Lesser Catastrophes…an Unflinchingly Honest Journey of Faith

I’m cooking…

Thai Noodle Salad, Snuggle Puppy’s birthday dinner, Eggs Benedict, Avocado Grilled Cheese, Tortellini

If you are looking for information on making sensory bins, you may be interested in my book.

One Family’s Gluten-Free Aspergers Experience

By Sharla Kostelyk 15 Comments

Our son Einstein has Aspergers. Through various methods such as creating an environment at home that met his sensory needs, homeschooling and adapting our parenting, he had been doing very well. He managed the challenges associated with his Aspergers admirably. About a year ago, Einstein hit early puberty and many of his Aspergers traits were exaggerated. He began struggling with tantrums, frustration, perseverating, and even at times, resorting to violence. It made things difficult for us as a family, but it also made things difficult for him. He felt guilty about his behaviour and felt out of control. We tried many different approaches but nothing helped. It seemed as though medication might be our only option.

*every family’s situation is different and I certainly don’t judge other parents who choose the route of medication nor am I saying that we will never choose that option, but we have seen it as a last resort and want to try everything else first

I had heard over the years of other parents having success with special diets for their children on the autism spectrum. The diet that seemed to be the most common for anecdotal results was gluten-free. It had always seemed like it would be too much work but I wanted to try absolutely everything before I resorted to medication. So back in March, I put our whole family on a gluten free diet for 3 weeks. That time period is not long enough to know how it affected everyone, but it was long enough to know that it was worth keeping Einstein on it.

He said that he had a much easier time falling asleep only 3 days into the diet and began to find himself becoming less easily frustrated and more peaceful. I was convinced that it was working and I began to see my sweet, gentle boy coming back! It was well worth the extra expense and time.

The Husband was not convinced that it had made that much of a difference however. After a few months, Einstein himself began to have some doubts about the effectiveness of the gluten free diet and began to cheat here and there.

Then came last month’s camping trip. The Husband took four of the kids for just over a week. Before they left, I stocked them up…gluten free hot dogs, buns, hamburger buns, graham crackers, marshmallows, cookies, snacks, and condiments. This way, Einstein could enjoy all the camping food and stay on his gluten free diet. Apparently, the gluten free eating lasted only a few days. I won’t get into too many details about behaviours and challenges for the rest of the camping trip, but suffice it to say that Einstein and The Husband are both TOTALLY convinced that the gluten free diet is a necessity!

The hardest part of switching to gluten free is not so much making separate meals for Einstein, but thinking of what to make. Some things are easy such as if we are having a pasta dish, I simply cook gluten free pasta for him but other things are much harder. One of the things that I have found difficult is that I often do a day of freezer meals that last a month or more and save me so much time (and money) but most of them have ingredients such as condensed soups or dry onion soup mix which contain gluten. This week, I am getting together with a friend whose daughter is Celiac and we are going to make gluten free freezer meals for our families. I have planned out the meals and though it took more research, we have a good selection and I think it will turn out well. I have created a printable list of 100 gluten-free snack ideas. This week, I will also be filling the freezer with things such as frozen yogourt drops, gf Rice Krispie squares and gf muffins.

I know that results will vary from person to person, but for our son, switching to gluten free has made all the difference in the world with his Aspergers. He is able to control his thoughts better and his behaviours and is able to function again.

Has it been hard? Very. Has it been expensive? Very. Has it been time consuming? Very. Has it been worth it? Definitely!

If you are looking for gluten free recipes and ideas, you can check out my gluten free category, my gluten free freezer meals series, and my Gluten Free Board on Pinterest.

How to Make Sensory Balls

By Sharla Kostelyk 33 Comments

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I have been busy making activity bags (also known as busy bags ironically!) for Dancing Queen and one of the things I decided to make for her were sensory balls. Making your own stress ball or sensory ball is easy to do and so inexpensive. Now that I know how easy these are to make, I keep some in the van, one in my purse, one in each of the kids’ backpacks, one in each of the calm down kits, and some in almost every room of the house.

How to make a stress ball:

The first time I made sensory balls, I filled balloons with homemade playdough. I didn’t bother to add scent or food colouring because once it was inside the “ball”, it wouldn’t be seen or smelled.

The next step seemed easy enough…stuff some of the playdough into a balloon. This was much easier said than done!!! I tried holding the balloon open with my fingers and shoving it in with the other hand. I tried holding it open with the fingers from two hands while having one of my girls shove playdough in and that resulted in little cuts on my fingers from her nails.

At this point, I still did not have one full stress ball! I then came up with the idea to insert a coupler (cake decorating tool) into the top of the balloon and make skinny snakes with the playdough and get them in that way. It was still tedious, but it was much easier than the other methods I had tried.After making about five of these playdough filled balloons, I began to think that there must be an easier way to make these sensory balls. I did a google search and read about filling them with flour. I made a funnel out of paper and quickly filled five balloons with flour.

The flour filled sensory balls felt very similar to the playdough filled ones. They had somewhat of a softer feel and did not hold their shape when pressed in the way the playdough filled ones, but when surveyed, every one of my kids preferred the flour filled sensory balls. I also filled a few with dry rice (also using the paper funnel) for a different sensory experience. None of my kids like the rice filled ones.Now when I make sensory balls, I don’t bother with the playdough ones at all. I fill all of them with flour instead of messing with the playdough or bothering with rice. The kids really like squeezing the sensory balls and they are a fraction of the cost that store-bought stress balls are.

*note: use the helium quality balloons for best results

Update: We’ve made these using just flour another half a dozen times or so over the past few years. They sometimes last for many months at a time. You can use permanent marker to draw a face on them or write the name of the child it belongs to. Remind kids not to bite them as they will break if bitten hard enough.

We take our sensory balls with us everywhere. The kids each have one in their backpacks. I have one in my purse for waiting rooms or in the van. Our kids also include them in their anti-anxiety kit and we have one in our sensory room.

Important note: Balloons present a choking hazard and a mouthful of flour isn’t very fun either, so only use these if you know your child won’t be putting it in their mouth and always provide supervision. If you have a child who always needs to put things in their mouth, give them an alternative sensory item for chewing.

For sensory information and resources for the home or classroom, check out Sensory Processing Explained: A Handbook for Parents and Educators.

Join me for a free 5 part email series, Little Hearts, Big Worries offering resources and hope for parents.

Create Your Own Anti-Anxiety Kit

Make Your Own Feelings Jenga Game

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10 Reasons Why I Homeschool

By Sharla Kostelyk 14 Comments

I think that there is a misperception out there that because I homeschool, I judge those who don’t chose to homeschool. I don’t. In fact, our oldest two kids are in school this year. But homeschooling really, really works for me and here are 10 of the many, many reasons why:

1. I like my kids! I really enjoy getting to know my kids and spending time with them. That’s not to say that there aren’t days when I don’t consider how nice it would be to go to the grocery store without kids in tow, but I really do like having my kids around! I miss the two that are in school this year.

2. Flexibility – We can homeschool when we want to and where we want to. We can move through curriculum as quickly or as slowly as we want to or need to. We can stop in the middle of something and decide that if a program isn’t working for us, we can ditch it and try something else. If the kids decide that they are super interested in something mid-year, we can add in a unit study about it at the time they are actually interested and will better retain what they learn. If we have friends or family visiting from out of town, we can set the schoolwork aside and work on relationships, which are far more important than book learning any day. If the opportunity comes up for a mid-week, mid-year family vacation, we can go without a second thought.

3. It works for my kids. A comment that we get often about our younger five kids is “you have such happy kids!” That says a lot I think about whether or not homeschooling is working for them.

4. Relationships – Homeschooling allows us to have the time to get to know our kids as individuals and form strong relationships with each of them. It also allows them to form strong sibling relationships. And it has allowed us to form relationships with other homeschoolers and homeschool moms both in person and online. It also allows more time for extended family relationships as at least once a month one of my kids will go and spend a day with their Oma and Opa…making memories that they will treasure for a lifetime.

5. The kids get to be kids – I love that with homeschooling, the kids don’t feel pressured to grow up before their time. They play with toys longer, climb trees longer, and don’t become interested in things like brand name clothes, members of the opposite sex (as more than friends), popular music, etc. until much later than their school-ages peers. (note: this is a generalization and I can only speak for what I see with my own kids and the friends their same age who are in school)

6. Daddy time – The Husband’s work schedule is somewhat flexible and homeschooling allows him to spend as much time as possible with the kids. This is a very good thing.

7. Unique needs of our family – Our family has some unique needs. We have a daughter with a chronic lung condition that requires a lot of care, appointments, and even occasional hospital stays. Homeschooling allows us to take time off when we need to, work around her schedule, and homeschool through the summer if we want to make up for lost time.

Our family has five children who are adopted and with whom we want to make extra efforts in terms of attachment and homeschooling allows us the time and ability to pour into them.

Our family includes some kids with special needs including one with Aspergers (a form of autism), several kids with Sensory Processing Disorder, two kids recovering from trauma, two kids whose first language was not English, one with a cognitive and speech delay, and two with a neurodevelopment disorder. I cannot imagine any school that would be able to meet their needs in the same way that I can. Homeschooling allows me to incorporate their therapy, sensory needs, and tailor what we do to how they learn best. I can also tailor things to allow their natural gifts and strengths to shine. Homeschooling allows my kids to be who they are without being concerned about what others think of them. Instead of an environment where they are comparing themselves to others and therefore feeling “less than” or “different”, they are in an environment where they are comparing themselves to only themself and feeling confident. I love seeing how wonderful their self-esteem is! They are also fairly encouraging of each other.

8. Faith and Character– I feel that it is our responsibility to instill our values and morals into our kids. Homeschooling allows me to weave faith into almost everything we do. If we are studying science, I can talk about God’s creation. I can use the Bible as a textbook. I can model the relationship I am building with God and am able to see the fruit when I hear the kids turn to prayer in the middle of the day for praise and petition.

I can offer opportunities for my kids to really learn about the world, about the needy, the orphans, the persecuted and as a family, we can try to make a difference in our community and the world. Through our years as foster parents, our work in the adoption community, and our travels to Ethiopia, our eyes have been opened and we want to pass along that compassion and willingness to serve to our children. (The Husband is actually helping to build a home with Habitat for Humanity today.)

9. Love of learning – I am a learner. I love to learn and for me, school almost took that out of me, but now as an adult, I have found that again and zealously pursue learning about things that interest me. Homeschooling has taught me at least as much as it has taught my kids. I want my kids to love learning too! I want them to love books and reading and wondering and for their curiosity to never end. I want to nurture their imaginations and their desire to know and understand.

10. They grow up too fast! – As we have witnessed first-hand with our older boys who are now 15 and 17, the years go by way too fast! Though when they are young, the days may seem long, before you know it, they are grown and you can never get those years back. Having my kids gone for 40 hours a week during those precious years just isn’t something I want to do. I want to cherish this time and use it to make their childhood full of family memories!

How Do You Qualify “Busy”?

By Sharla Kostelyk 10 Comments

I have seven children. Three or maybe four of them have Special Needs. I am an adoption advocate. I am a writer. I run an adoption website. I homeschool. I am a blogger. I have a medically fragile child who requires a lot of care. I am a wife. I am a daughter, an aunt, a friend. I cook. I bake. I do the meal planning and the shopping. I used to be a scrapbooker and a reader! I think that most would not argue with me that I am busy.

But the thing is, I was busy when I had two kids. Back then, I had a sick baby and my body was recovering from a difficult pregnancy and I was nursing and getting up at night and my husband was a full time student and I babysat and held craft sales and sold scrapbook supplies and held workshops at our house to try to bring in some extra money. Man, was I busy!

And then when I had four kids (because we were foster parents, we pretty much jumped over three!), I had fostering paperwork and case conferences and four kids and Bible study and foster parent training courses. I was busy!

And then when we had five kids (three through fostering), my oldest was five and I had two three year olds and an eight month old and a four month old and I used to go for walks pushing the double stroller wearing a baby in a backpack carrier or a Snugli and wow, then I was REALLY busy!

And then we went down to only three kids for awhile and at first, I felt like I had all the time in the world! I read; I scrapbooked; I took baths; I threw the most awesome parties for my kids’ birthdays. But I began to fill in my time…I started homeschooling. I began leading a women’s Bible study and I took extra courses and before long, we had taken another few kids and then, I turned around one day and we had (including fostering) six kids with four of them in diapers!!! Ok, I was finally really busy!

And then we fluctuated here and there but mostly had four or five kids and we started adopting some of our former foster kids and there was a lot of paperwork involved with that and we moved two times in one year (not my idea!) and our sweet Granola Girl was born and came to us as an awesome surprise with just a few hours notice and then we were suddenly parents to six, our five and our beloved long-term foster son. And he had appointments, many, many appointments and Granola Girl didn’t sleep through the night until she was 17 months old and we had our house for sale and I had to try to keep it clean for showings and I was The Husband’s assistant in his work and it’s a wonder I didn’t go crazy, because I was really busy!

And then we helped transition our foster son to his forever family, we moved to an acreage, and could almost breathe a sigh of relief. Except that that was about the time Miss Optimism’s health issues came to light and a few months later, we found out that Einstein had Aspergers and The Husband was going through some career changes and we were in the middle of pursuing an international adoption! Are we nuts?! Oh, and we were renovating to add bedrooms and the house flooded three times and…I was busy!

And then I was homeschooling five kids and the kids were a bit older so we were no longer getting up in the night with them or changing diapers, but we were driving them to activities and friends’ houses and the oldest to his job and then we got the phone call that we had been referred siblings, a boy and a girl from Ethiopia. Now, I was busy!

And then before we could even catch our breath, our adoption agency went bankrupt and we had to rush over to Ethiopia and in the blink of an eye, we had seven kids! And two of them spoke no English and had experienced a lot of trauma and had a hard time adjusting. I was driving to play therapy and pulmonary specialists and the hospital and art classes and The Husband was driving to hockey and Cadets and soccer and their work and his work and my mom was driving them to swimming lessons while I did laundry with just two of the kids home those few hours every week. I was homeschooling kids with Special Needs and kids who spoke no English and one in Junior High and we put our oldest in school and I don’t know how we made it through but we did, but we were busy!

Busy is relative. Busy forces changes like finding systems that work. My friend Tracy says that if you need something done, ask a busy person because they are more likely to say “yes” and figure out a way to make it happen!

See, the thing is that I have friends who just have one or two kids, but they have an aging parent that they are caring for or are juggling a career and being a single mom or are battling a chronic illness themselves. They are busy! I mean, really, really busy.

Whatever your circumstances are, chances are, you are busy. You are filling your time with the things that matter to you, the things that you have to do to meet your needs and those around you. You don’t need to qualify your busyness against someone else’s.

I know that in our society, we are programmed to think that we have to be busy, but at the same time, that being busy is a burden. I get trapped in that way of thinking sometimes too, but when I really sit back and think about it, my being busy is a blessing. It means that there are others in my life. It means that I matter to people (even if sometimes it feels like I only matter because I feed them and clean up after them!). It means that I am of able body and somewhat sound mind. It means that I have. If I did not have (gifts God has given me, children, a husband, friends, extended family, money for food, a house to clean, passions), I would not be busy. And that is not the life for me.

So today, I am embracing my busyness. I am going to find the blessings in it. There are a multitude.

Denial

By Sharla Kostelyk 18 Comments

Denial can be a beautiful thing. You can choose to believe what you want to believe. But when the something you believe isn’t true, there is always going to be that undercurrent, those unsettling feelings, that quiet voice in your mind that whispers the truth. In my experience, the whispers tend to get louder and can turn into screams. And then you are forced to confront the truth…the thing that you have known all along.

What am I talking about? I am talking about this thing that most parents of special needs kids do at one time or another. We tell ourselves that our child just needs more time to catch up or that the obvious differences between our child and their peers are not a good indicator of where our child is at because we don’t want to face the truth. Facing the truth is painful. Admitting that there is a problem is hard.

As parents, we want our kids’ lives to be the best they can be, for their futures to be limitless. Acknowledging that there will be struggle and hardship up ahead, more so than just for the average person is not something that is easy to do.

I have walked this road twice before. When we first admitted to ourselves that it was time to have Miss Optimism assessed for what we knew was a neurodevelopmental disorder, it was very hard to take those initial steps. Then, hearing her diagnosis (even though it was EXACTLY what we knew it would be) caused grieving. We grieved for the life we would have wished for her. We grieved knowing of the additional struggles she would face. We even grieved for what we would lose.

When we first realized that Einstein had Aspergers, we grieved again. One thing that made his diagnosis easier is that that time, we didn’t have to wrestled with whether or not we wanted him assessed and “labelled”, something we had wrestled with for hours in regards to Miss Optimism. We had been through that part once before and knew that we wanted to follow through with the assessments. But admitting that our child would possibly be ridiculed and made to feel different just broke my heart as a mother.

You would think that by the third time, I would just be able to move forward and get on with things, but I have had the hardest time this time. I went through a period of “why me?”. I questioned whether God knew what He was doing when He placed another special needs child with us. Did He not know that this would be more than I could handle?! And then that questioning led to some peace. I know that He knows that I can handle this. I am not yet in a place where I believe it yet, but I know that I am just going to have to trust in Him for now. And for now, that is enough.

So we stand here again. I spent a long time on that lonely road of denial. I thought that surely having two special needs kiddos meant that I could not have another! Surely I was entitled to special consideration! It was excruciatingly painful to have to admit that it was not only possible that we had three special needs kids, but it was fact.

It took courage and a lot of prayer for me to first pick up the phone and start phoning around about getting assessments done for Dancing Queen. We had the first assessment on Monday. The result? Severe speech delay in seven of the eight categories they tested and possible auditory problems. One diagnosis down, two or three more to go. We suspect that we know what all the results will be. We suspect we know the labels that will be written about her on paper, though we know from experience now that those labels need not define her.

And even though this first diagnosis of a severe speech delay is a small one, I did cry to see it in black and white. I will probably shed a few tears when our next suspicions are confirmed as well. I’d like to say that because I’ve walked this road two other times, that I know that things will get better, but I’m still in that painful stage. I think about the appointments that are in the near future: speech therapy for her and for Granola Girl (did I forget to mention that Granola Girl was diagnosed with a moderate speech delay on Monday?!) once or twice a week each, one to two appointments a week for Miss Optimism’s lungs, one to two therapy appointments a week for Dancing Queen, further assessments, and the usual dental, doctor, etc. for all the kids and it just feels too overwhelming.

Right now, I’m in a bit of a feeling-sorry-for-myself phase. I wish that I could stay in bed, curled up under the covers all day and have a good cry, but I have a daughter who is struggling to breathe and another who is confronting past trauma and severely delayed and a son working on healthy attachment and another going through some teenage issues and three more kids who need me too in their own ways and so I get up every morning and I put one foot in front of the other and remind myself to be thankful for each one of them…and I am.