The Chaos and the Clutter

Special Needs Parenting

Parenting a Sick Child: Taking Care of Your Other Kids’ Needs

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Having a sibling with a chronic or terminal illness can have a lasting negative impact. Here are some suggestions for helping your other children cope with the illness of a sibling.

Growing up as the sibling of a sick brother or sister is difficult. In addition to much of your parent’s attention being directed toward the child who is ill, there is also a lot of worry and uncertainty in your life.

One of our daughters, Miss Optimism, has a chronic health condition that at times, has kept our family hostage. To believe that her condition has not impacted our other children would be naive. We have had to cancel family vacations when her condition was unstable. Even our daily plans and routine are never guaranteed because of the uncertainty her health involves. There have been periods of our lives, including an eight month block, when my attention needed to be focused on keeping her alive. When that is my focus, it only stands to reason that the other kids miss out on my time and attention. If I am not careful, their resentments will start to build towards me, and towards their sick sister. There are some steps that you can take to preserve your family and protect your other children, even while dealing with the demands of caring for a sick child.  So often, we take care of the most immediate issue, which is the health of that one child, without considering the impact the situation is having on the mental health of the rest of the family members.

Have them help. You do not want your other children to have to slip into the role of caregiver for their sibling, but having them help with small things pertaining to their sibling’s care will help them to feel involved. Helping will also give them some time with you and give them the opportunity to ask questions and learn more about their sibling’s health condition. It also will give them more empathy towards their sibling if they see what type of treatments they go through. I sometimes ask one of my sons or other daughters to carry my daughter’s medication bag to me. I use this opportunity to praise them for their help and also to tell them what the medications are for. Each time that my daughter goes in to the doctor for injections, she chooses one sibling to go with her. She likes to show them how brave she is when she gets her needles and they like to go because they get a lollipop from the nurse afterwards and get to spend some time with me.

Talk openly. This is by far the most important thing. If you take nothing else away from this article, please remember this. Children have very active imaginations and they will imagine things that are far worse than the reality. Thinking that you are shielding them from the truth by not telling them or by only telling them certain things is misguided. Of course, you will need to determine what to share based on the age, maturity and personality of the child. You can ask a doctor or therapist for their advice on this or take cues from your child.

Having a brother or sister who is sick is scary and they are probably already imagining the worst case scenario and living in fear. Be honest with them. By sharing as a family what is really going on, you will also open up the doors so that your child will be able to ask you questions and share their fears with you. Children commonly assume that they will also become ill with whatever condition their sibling has, but do not express this unless you open the door for that conversation to happen. If their sibling is terminally ill, talk about the possibility that their brother or sister could die. Ask them how they feel about that and give them the opportunity to do or say what they need to.

Spend the time. Having a sick child feels like it takes up all of your waking (and non-waking) hours. It also feels like it takes up every ounce of your energy. Sometimes the thought of trying to make extra time for your other kids just feels like too much. But it is imperative that you do. You need to find a way. That could mean that you utilize a babysitter, respite service, or a relative to care for your other children or that you just allow one child to stay up later than the rest on a rotating schedule so that they will have one-on-one time with you. You can also spend time with them while you are caring for your ill child by involving their help or bringing them to appointments with you.

At one point, our daughter was going to see her specialist at least three times a week for months. When I would take her to those appointments, I would be gone for at least four hours. That kind of time away from the rest of the kids takes its toll. By bringing one of them with me to the appointment, I also took some of the mystery away. They no longer had to wonder what I was doing when I was gone to these appointments because they had each been there. Of course, time with the other kids is not always possible such as when our daughter is in the hospital, but them seeing that I am making the effort when I can goes a long way with the kids.

Get professional help. Having a child with a long term illness takes a toll on the whole family. Being aware of the impact that it is having on your other kids is a good first step, but that may only add to your guilt that they are not getting a “normal” childhood. There comes a point when you cannot cope alone. Get your other children in to see a therapist, enrol them in group therapy where they can talk to other kids who also have a sibling who has an illness, or check with your local hospital to see if they have any sibling programs. They often do. Some of the sibling support groups will be very specific, such as ones where all the kids have a sibling who has cancer. The more specific programs are generally better, though any therapy or program specific to siblings is probably better than none.

Books. There are many children’s books available that confront the things that may be scary to your children. There are books on hospital stays, doctor’s appointments, sickness, and even death for children of all ages. Choose books that are age appropriate and remember to also read them to the siblings of the sick child, not just the sick child.  We often remember to read a book on going to the hospital to the child who will be going, but forget that their siblings may have fears as well and would benefit from learning more about it.

Children’s books about going to the hospital:

Going to the Hospital Sticker Book
Franklin Goes to the Hospital
Going to the Hospital (this one has pictures of real people which I like)

Children’s books about going to the doctor:

The Berenstain Bears Go to the Doctor
Going to the Doctor Sticker Book
Say “Ahhh”: Dora Goes to the Doctor

Children’s books for siblings:

When Molly was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children
What About Me?: When Brothers and Sisters Get Sick
When Someone You Love Has Cancer: A Guide to Help Kids Cope

Ask for help. Ask for help from those around you so that you will have more time to devote to all of your children. Many churches have programs where they will deliver meals to families who are dealing with illness or loss. They also may be able to get volunteers to come in and clean your house or sit and read to your ill child while you play with your other children. You cannot do this alone. Ask for help from your community, your neighbours, your friends, your church, and your family.

Using Emotion Cards with Children with Aspergers

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Through a variety of methods, we have been able to greatly improve the social IQ of our son who has Asperger’s syndrome.  Emotion cards have been a key tool.

When working with a child who is on the autism spectrum, the ability to teach the child to read and understand facial expressions and non-verbal cues is one of the goals. With our son Einstein, we play games. One of these is a simple mimic game where he attempts to mimic my facial expression and repeat the name of the emotion I am displaying. Another very similar game is when I give him an emotion and he attempts to show me the corresponding facial expression. This game is more frustrating for him, but he has made progress with it and is able to display the more overt emotions accurately. The subtle ones still allude him much of the time. These are examples of games that can be played daily that cost nothing and work on important skills.

It is important to keep in mind that children who have Asperger’s or are otherwise on the autism spectrum tend to frustrate easily, so keep the games very short and maximize the opportunity for success. The way that I achieve this with my son is to start with a few very overt and easy emotions or facial expressions and give him verbal praise and feedback for his success. I then add a more subtle one that I know will be a challenge for him. This does bring about frustration and can lead to a meltdown, but I try to keep him on track and praise him for any effort he makes and then I follow quickly by a very easy facial expression that he knows for sure. In this way, we end the game off on a positive note.

There are some drawbacks to playing these games though. One is that children on the autism spectrum do not transfer information well from one situation to the next, so in doing the games, I am teaching my son to read only my facial expressions and body language. He then has a harder time transferring that to the faces of others. This is where the use of emotion cards comes in. There are many that are on the market. You also can find some printable ones on the internet. It is very important that these be real human faces. Seeing cartoon faces or emoticons will not help a child with autism in the least.

My favourite emotion cards to use are Language Builder Emotion Cards by Stages Learning Materials. This small compact box can be brought with you to appointments and used anywhere. These cards only show a few different emotions (happy, sad, angry, surprised, and disgusted), but these expressions are shown as close-up photos of 8 different men, women and children of a variety of ages and ethnic backgrounds. This makes learning their expressions easier for the child to then transfer to what they will encounter in real interaction with people. As there are several emotion cards for each feeling, there are a variety of games that you can play such as having the child match up the cards that display the same emotion. There are ideas given in the box of different games to play and ways to make them more difficult as the child’s abilities improve.

My favourite thing about the Language Builder Emotion Cards is that in addition to the close ups of facial expression photos, they contain pictures depicting interactions between people in different scenarios. On the back of each of these cards are prompts for asking the child questions such as, “what do you think the woman is feeling?”, “how do you think these two people know each other?” or “what do you think might happen next?”. These scenario cards are what I love most about this emotion card box. It is in these scenarios that the child can be taught ways to interpret body language, facial expressions, and the interaction between people. Doing this with a picture instead of a human scenario is less threatening for the child and increases their chance for success. These scenario cards and discussion prompts were very difficult for my son at first, but with patience and continued use, he has improved on his ability to identify emotions and interactions from the pictures.

Using emotion cards with children on the autism spectrum can be a very effective tool. Ideally, the emotion cards should be in full colour, depicting expressions on real human faces of a variety of ages and ethnic backgrounds. It is also important to refer to the emotion cards when going about daily routine. If you see your child becoming frustrated at not being able to read a scenario or person’s face in an actual situation, you can quietly ask them if they recognize that look from the emotion cards. As reading facial expressions and communicating are both areas of struggle for my son, working with the emotion cards and picture scenarios has improved his social IQ and ability to function in situations that are uncomfortable for him.

I have also used the emotion cards with our daughter with PTSD and RAD as she also struggles with not understanding situations as she perceives danger where there is none. This has proved to be an effective tool to increase discussion and learning opportunities with her as well.

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Answering the Rude Questions

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Following yesterday’s post about when your family is a walking ad for a certain type of non-traditional role, I received a lot of comments both on the blog, on Facebook and via e-mail. The main issue people raised was not knowing how to handle when strangers ask rude questions. I can only speak for myself and how I have chosen to handle that situation. I can also speak to what I have found to be the most effective method over the years of trial and error in this regard.

I want to first clarify that I am not speaking about the usual curious questions that families that stand out get when in public. These techniques are for using only when the questions or comments are rude and spoken in a tone that conveys that rudeness.

There are three main ways that I think these scenarios can be handled…by being blunt, by being honest or by being cheesy. I will give several examples of each of these in real world scenarios to give you a good foundation on how they work and then I will tell you which one I have found to be by far the most effective.

“How much did she cost?”

Blunt – “I’m sorry about the look on my face but I am honestly shocked that you would speak about my daughter as though she were a piece of furniture!”

Honest – “There is no price tag on human beings. If you are asking how much her adoption cost because adoption is something you are considering, I would be happy to give you the phone number of our adoption agency.”

Cheesy – “Like all of my children, she is priceless!”

“Where is her real mom?”

Blunt – “Her real mom is standing right in front of you.”

Honest – “It is generally accepted to use words such as ‘biological’ or ‘first parent’ when referring to what I assume you are referring to, however I am about as real as it gets!”

Cheesy – “I am so proud to be her real mom. Aren’t I blessed?!”

“How do you handle being with them all day? If I had to homeschool, I think I’d kill myself.” (yes, all of these are honestly questions I have fielded over the years!)

Blunt – “If I had to homeschool your kids, I’d feel the same way!” (ok, I’m kidding! I would NEVER actually say that!)

Honest – “There are certainly days when it is a challenge but I rely on God for my patience when I get to the end of myself and He hasn’t let me down yet.”

Cheesy – “Their childhoods goes by so quickly and I don’t want to miss a moment!”

“My kids knew better at that age.” (in reference to my then-9 year old tantrumming)

Blunt – “Congratulations on raising your neurotypical kids well!” (I probably couldn’t say that with a straight face.)

Honest – “Some special needs are invisible and compassion goes a long way.”

Cheesy – “It has been both a challenge and a privilege to raise a child with special needs but I wouldn’t trade him for the world!”

I previously wrote more on some of the real world questions we have encountered that are so strange they just boggle my mind and on how I chose to respond to them.

Another way that works to some degree is to speak in generalities like in the case where someone asks:

“Were they orphaned?”

Generalities – “Children come to adoption for a variety of reasons. Some of these reasons include poverty, their first family being unable to care for them due to illness, the death of one or both parents, war or famine, or a first parent making an adoption plan for their child.”

“Why don’t you just have your own children?”

Generalities – “People choose adoption for a variety of reasons. These reasons may include infertility, secondary infertility, feeling called to adopt, or wanting to provide a home for one of the more than 147 million orphans in the world.”

The benefit of generalities is that it allows you to answer the question without divulging any of your child’s personal story. The negative of generalities is that when using this technique, the answer is usually followed by many more questions.

The most important thing to keep in mind when answering any question:

The stranger standing in front of you will be in your life for a few minutes. Your kids who are within earshot of the conversation will be in your life forever. I tailor every answer so  that it builds my kids up and lets them know that I love them, am proud of them and would do it again (adopt them, birth them, homeschool them) in a heartbeat!

The most effective way to end the conversation but keep your kids’ hearts intact:

By far the single most effective way to shut down conversations that are making you uncomfortable is to use either the cheesy technique or to bring God into it because who can argue with God? An example would be:

“Why would anyone choose to have this many children?”

God – “God called me to this and I’m so glad He did. It has been a challenge but such an incredible blessing!”

(Do you see how I combined giving God the glory and the cheesy technique?!)

By using the cheesy technique, you are able to stop the conversation before it starts while at the same time reinforcing to your kids that they are a blessing.

Keep the conversation going in the car.

After a rude encounter with a stranger, I feel that it is important to acknowledge it with your kids afterwards to see if it brought up any feelings in them that they need to discuss. You may choose to say something such as, “you know when that woman in the store asked me why you were brown, how did that make you feel?” It’s also appropriate after they have shared your feelings to share your own feelings about the situation too in an age-appropriate way that keeps the child’s dignity intact. You can also turn it into a learning experience by discussing what sorts of questions are and are not appropriate to ask of strangers.

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

When Your Family is a Walking Advertisement

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When your family in one way or another fits outside what society deems the norm, you become (whether you like it or not) an ad for the particular thing that sets you apart.

If you are a homeschooler and you take your kids out grocery shopping during the day on a weekday, people may ask why your kids aren’t in school and when you or your kids reply that they are homeschooled, you become their image of what homeschoolers are.

If you are a transracial adoptive family and you go out in public ever, you become the image for people of what an adoptive family is.

If you have a large family and you go out and are asked “are they all yours?” or “are you babysitting?”, from the minute you open your mouth to answer, you have become in that person’s mind, the image of what a large family is.

If you are a single parent family, a two parent family with an only child, a stay-at-home mom, a family who shuns technology, a family with a special needs child, a Christian family, anything and everything that sets you apart from what is considered “normal”, you inadvertently become a walking ad for that particular group that you represent. This is an important responsibility. You can shape and mould people’s opinions of the type of family you represent by how you conduct yourself.

Does this mean that when you are out, your children need to have perfect behaviour? No! Not at all! In my opinion, once you are aware that you represent a certain group that people may have already developed stereotypes for, you just need to represent it well in the following ways:

Be gracious. Yes, the questions can be annoying and even offensive. Yes, your time is precious and being stopped by strangers to ask you the same questions over and over again can eat that time up. But if you keep in mind that this person is formulating an opinion not about you, but about the entire group that you represent, then answering their questions graciously can positively impact their perspective for others who will go after you as well.

Be prepared. By rehearsing responses to common questions ahead of time, you can save time and you can answer in a way you won’t regret later. You won’t, however be able to prepare for every question. Even now, years after becoming a family that stands out, I am still sometimes shocked and caught off guard by some of the strange questions I get asked, especially when they are asked in front of my children.

Prepare your children. Discuss with your kids the concept that because your family looks different than some families or has made different choices than some families, you may get questioned and that in a way, you are representing all homeschool families or all adoptive families or all “insert title here” families. Explain that people are naturally curious. Be sure to rehearse with them some non-answers as well that are polite but protect their privacy. These can include things such as “those aren’t things we share with people outside of our family but it was nice to meet you. Have a great day.” or “I’m not comfortable answering that because I don’t know you, but there are a lot of good answers on the internet about adoption.”

Role play different scenarios at home so that your kids are pros before they are even put in the situation. For example, pretend that you are a cashier at the grocery store and ask them, “why aren’t you in school today?” and have them practise saying, “I am homeschooled so this is school” or “I’m homeschooled and I love it” or “I’m homeschooled so this is like recess” or whatever answer the two of you come up with together that they are comfortable with.

Show compassion. This is similar to showing grace. By understanding that human beings are curious by nature and that there are even things that we are curious about because we are unfamiliar with them, we can show compassion to the ignorant comments or questions that may come our way.

Be an ambassador. When we used to be foster parents, I carried business cards for our foster agency with me and sometimes even pamphlets because I found that often the reason that people asked questions was that they, themselves had considered fostering or adopting and they were looking for more information. Now I carry a business card with this blog address as well as the one for my adoption blog.

I find the same is often true for homeschooling. Sometimes they have a family member who has chosen to homeschool and they are worried about them and when they see your seemingly functional family out in the community, it helps set their mind at ease.

I often think of Michelle Duggar when I am confronted with situations where it feels like our family is almost under scrutiny. Whether or not you agree with her family’s choices (they are a Christian, homeschooling family with 19 children who have a reality TV series), there is no denying that she always portrays children as a blessing and that she spreads that message through her words and actions. She is an ambassador for appreciating and cherishing your children and if I can emulate that even some of the time, then I am succeeding.

Use judgement and discretion. I am not suggesting that you stop everything you are doing to have a half an hour conversation with everyone who asks you about your lifestyle choices. You will be able to tell about thirty seconds into a conversation if the person is asking out of sheer curiosity or if it is because they have some sort of a personal connection and want more information for a purpose. If the latter is the case, you may choose to have a more in-depth conversation or you may choose to exchange email addresses to provide them with more information that way. Be sure to also use discretion not to share things that are private with strangers.

Our experience. We are obviously not what society considers a “normal” family. We are used to being the “poster family” for…you name it! We were foster parents for eight years, five of our children are adopted; we have a large family; we homeschool; we are Christians; we are a transracial family; we are a family with special needs children; I am a stay-at-home mom. I am used to the stares and the questions and feeling like we are under a microscope when we go out. I have chosen to use it as a positive. I feel like it is a privilege to be able to represent adoption and homeschooling, two things I am passionate about. I feel that our having so many kids speaks to our feeling that children are a blessing.

But being this walking ad can also be exhausting. The stares and the scrutiny can feel like judgement when I am out and about with the kids if we are having a bad day or if their behaviour is less than stellar in public. Some days, I wish we could just run into the store and grab some milk without being stopped three times and asked twenty questions. We chose this life though, this slightly unusual life that inspires curiosity and questions and we have tried to make the best of it.

How does your family handle being a walking ad?

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Homeschoolers – When You Need Outside Help

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Homeschooling in most cases is a parent teaching their child or children. In some families, both parents are involved in homeschooling. There may be other adults involved in the child’s education in some way such as a swimming instructor or piano teacher or sports coach.

Speaking as a homeschooling mom, it can be hard to admit when my kids need something that I cannot provide them. But that has been the case in the past at times and I am certain that over the years, it will continue to be an issue that pops up.

I am not strong in math and struggle to even have the confidence to teach our kids beyond the lower grade levels. When our older boys got to junior high, we enrolled them in math summer school which improved their abilities and their confidence and took a burden off me. I felt much better knowing that they were grasping the concepts and had a solid foundation in math to build on.

A few of our kids have really struggled in learning to read. Two in particular were not making any headway no matter what methods I tried. Yes, there were special needs and considerations for both of them, but even keeping that in mind, I began to feel like I was failing them. If there weren’t the special considerations, I would have been fine with allowing them to come to reading at their own pace, but I knew that would not be possible for these two without some heavy-duty help.

Last spring in baseball, Snuggle Puppy could not read his own name off the roster in front of his team. He was embarrassed but I’m sure no more than me. My husband gently (and then not so gently) suggested that we look into tutoring for the two kids and at first, I was resistant. At one point, I flat out refused.

As the homeschool mom, it seemed that accessing outside help would be admitting that I had failed. I had tried so hard and I had failed. I was ashamed to admit that I could not do this thing that should be fairly simple…teaching my child to read. I had taught my older boys to read. Maybe if I just tried harder or longer or smarter. Maybe if I found a new curriculum that I hadn’t yet tried. Maybe if I prayed harder…

I can look back now and admit how hard it was for me to come to a place where I acknowledged that I could not do it on my own. It hurt.

I had to do what was best for my kids though. It turned out that what was best for them was to bring in some professionals who specialize in reading. Both kids began their tutoring in the summer and they “graduated” this week. The difference the program made was remarkable and now they are both at a level that I can build on at home. Miss Optimism is reading, really reading and Snuggle Puppy is at the beginning stages of reading. I am proud of both of them and so glad that I got out of their way so that they could succeed. My pride had been holding them back.

If you are at a place where you have tried different methods of teaching with a particular child and nothing seems to be helping, do not feel like a failure. You may need to prayerfully consider accessing outside help. This help may come in the form of a tutor, a grandparent or neighbour who has a particular expertise, or even enrolling them in a supplemental class.

There is nothing shameful about being able to admit when someone or something else might be a better fit for teaching your child something. There is however, something shameful about allowing ourselves to be so concerned about our failings as a homeschooler or as a parent that we cause our children to fail. I’m glad that I was finally able to allow my kids access to what they needed.

Self-Talk Challenge

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About a week ago, The Husband challenged me to do something he had heard about. It seemed like a really good opportunity for me since along with changing my physical appearance, there are a lot of others ways I’ve been working on myself and part of self-care is learning to treat yourself well.

The results of the challenge were surprising. I expected to discover that I was a bit hard on myself, but since I have been working hard on transforming myself inside and out and most of all, working on allowing God to transform me, I was shocked to realize how hard I must have been on myself before. I can only shudder to think of what the challenge results would have looked like a few months ago!

Before I give you my challenge results, I am first going to issue you the same challenge. It’s simple and may give you as much insight and help as it gave me.

You will need:

-an index card or scrap piece of paper

-a pen, pencil, crayon, marker, lipstick, or other writing implement

Draw a line down the center of the paper. On one side write “positive” on the other write “negative”. Now during a 24 hour period (or 48 hours if you’d prefer to get a multi-day sample), just be mindful of the thoughts that come into your head. If they are positive self-talk, add a tally mark to the “positive” column. If they are negative self-talk, add a tally mark to the “negative” column.

Examples of positive self-talk might include:

“I’ll figure this out.”
“I can do this.”
“This shirt looks pretty good on me.”
“I handled that well.”
“That supper was delicious if I do say so myself!”

Examples of negative self-talk might include:

“I’ll never be good enough.”
“I will never be able to do this.”
“I don’t look good in anything I wear.”
“I am such an idiot.”
“I am so fat, ugly, stupid, frumpy, absentminded, boring, less than (or whatever other insult you can throw in there).”

That’s it! It’s a simple exercise but I think you will find that it provides quite a bit of insight. Not only will you discover if you are thinking more positive thoughts than negative ones, you also may notice patterns that correspond to those thoughts.

I noticed that my thoughts were very much influenced by things others said to me, how others reacted to me, how successful I was at the tasks I was working on,  whether I had eaten, how much water I had had, whether I had exercised, what the environment was like around me, whether I had music on, how much time I had spent with God that day, and a host of other factors. These observations will help me in my goal of achieving more positive self talk and less negative.

Here are my results from one sample day:

(Yep, they are approximately 10:1 in favour of negative self-talk!)

Honestly, I was appalled at my results. “They” say that with your children, you should be very careful to give 10 praises for every correction you give. I have also heard over the years that one negative can cancel out as many as ten positives. After trying this challenge over several days and noticing that my results were better some than others but still sadly skewed, I thought a lot about how messed up my kids would be if I treated them the way I treated myself. I mean, can you imagine if I gave my kids ten negatives for every positive? They would need a lot of therapy in the future!

And though I may not be saying these things out loud, my self-talk is observed by my kids in other ways. While doing this exercise, I noticed that sometimes my negativity about myself does escape my lips. I also have a hard time accepting compliments, something my kids no doubt are learning from. For their sake and for mine, I need to improve my self-talk. I am working on it.

This brings to mind that scene in a movie where Rodney Dangerfield is looking in the mirror and says, “I’m good enough, I’m smart enough, and gosh darn it, people like me”. While I haven’t yet started talking to myself in the mirror, I do feel that I need to take action to change my self-talk. Being more aware of it has been my first step and that has helped already as has making changes to my environment (praise music, upbeat music, light, my tone affecting my children’s tones, getting exercise, nutrition, and enough water, etc.). I plan to redo this in a few months to see how far I’ve come.

So are you ready to take the challenge? I’d really love it if you’d share your results or something you learned in the comments section. Let’s encourage each other on this journey!