Parenting a child who is ill or who has special needs is a difficult job.  One of the most important parts of that job is advocacy.

Advocating for your child’s medical, educational or emotional needs is critical in order to get them the best treatment and quality of life possible. Children with a disability or illness need someone in their corner who is able to give them a voice and as their parent, this has to fall to you. Here are TEN important factors in child advocacy:

Research. Finding out that your child is sick or having them diagnosed with a disability is overwhelming for any parent. Once you are over the initial feelings of shock, sadness, anger, and helplessness, it is important that you arm yourself with knowledge. Knowledge is power. The feeling of helplessness will lessen if you are doing something to help your child and research is the first step.

Get to know the lingo surrounding your child’s condition. There is nothing scarier than hearing professionals discuss your child and not being able to understand what they are saying. Learning the vocabulary will not only help you understand them, but will also enable them to share more with you and involve you in your child’s case.

In researching your child’s condition, the internet can be a tool, but it is important to note that not everything you read on the internet is true. Anyone can write anything on the internet. Be sure to cross reference what you learn on the internet with medical journals, books in the library, and with your child’s physician. Misinformation can be scary, so be sure that what you learn is accurate. Many parents are afraid of what they will find if they research their child’s diagnosis and therefore skip this step, but you cannot advocate effectively for your child unless you understand as much as possible about their condition, the treatment, and anything else that could affect the outcome.

Choose a good doctor. When our daughter Miss Optimism’s health started to decline a number of years ago, after doing some initial research about her condition, I began searching for the best doctor possible. I asked friends of mine who were nurses. I asked people who knew people who had children with similar conditions. I asked other doctors. I researched online. One name kept coming up everywhere and I knew that he was the doctor we wanted in our corner. Now, years later, I have never regretted that decision. My only regret was in not actively looking for the best doctor specializing in her condition sooner. She spent two years with a Specialist who was not the best and who did not truly care, and it caused additional stress in an already stressful situation. If you are not happy with the quality of care your child is receiving, do not be afraid to look for another physician. Also NEVER BE AFRAID TO ASK FOR A SECOND OPINION!

Ask questions. Don’t be afraid to ask questions. If there is something in the plan for your child that you do not understand, ask. Ask about side effects of any medications or treatments. Ask about alternative treatments. Ask about the research behind things and the reasoning behind decisions.

Stay current. Continue to research as medical breakthroughs are occurring all the time. Stay abreast of the latest research. One caution here though is to pick and choose which of those you present to your child’s physician. If you are coming into the doctor’s office every week with a new alternative treatment that you want them to try, you will quickly be dismissed. If, however, you sift carefully through all the information that you uncover and present what you consider to be the very best ideas, you will be given more respect and taken more seriously.

Remember that what works for one child does not always work for another. I had read a lot about the benefits some families had seen in putting their children who were on the autism spectrum on a gluten free diet and decided last year to try it with our son Einstein who has Aspergers. For us and many others, it has made a huge difference, but for some, there are no noticeable changes with this diet whatsoever.

Keep important documents with you at all times. Each child’s situation is unique and the documents will differ, but you should always keep a list of the medications your child is on as well as the dosage for each, important contact information for their physician, emergency contact numbers, and copies of any papers that outline the child’s condition. You may also need to carry things such as insurance papers.

You may not think that you need to carry these lists as you know your child’s medications, but if there were ever to be an accident and you were unconscious while your child were being transported to the hospital, this information could save your child’s life. Also, in situations of extreme distress such as if your child were to stop breathing, it may be impossible for you to remember the dosages of their medications.

In our daughter’s case, I have a letter from her Specialist that I carry with me everywhere. As her condition is rare, I have had to take this letter out several times at the hospital when they were going to release her as they did not understand the seriousness of the condition. As her mother, I was trying to advocate for her, but doctors tend to assume that parents overreact and were in the habit of not listening to me until her Specialist provided me with this letter. Once I pull that letter out, action is taken immediately and apologies are usually made. Her physician is so highly respected that his name alone carries weight and his instructions are taken very seriously. Having this letter saved our daughter’s life just last year.

We also have a letter that we carry with us when we travel and I carry insurance papers and a list of her medications. I did not used to carry the list of medications, but last year when we had a bad scare, I was so panicked that I could not remember even the most basic things in the Emergency room.

Follow your gut. Doctors and nurses have years of medical training, but you know your child best. If you know that something is not right, follow your intuition as a parent. If you are turned away or dismissed, continue to pursue it. Many children’s lives have been saved thanks to a parent who followed their instincts. I cannot stress this one enough. You are truly the expert when it comes to your child.

Ask the doctors “what would you do if this were your child?”  When faced with making a decision about treatment options for your child, do as much research as you can, but also ask this question of the people treating your child. Their answer may help you determine what to do.

Never be afraid to stand up for your child. There is likely no one on this Earth who loves your child as much as you do. Your child needs you in their corner ensuring that all is being done to care for them in the best and most effective way possible. If you are not happy with something, never be afraid to speak up. The stakes are high. Remember that any parent in your position would fight to see that their child was cared for.

Take care of yourself. Caring for a sick child or a child with a disability is exhausting and time consuming, all consuming really. If you do not take care of yourself though, you will not be able to take care of your child. If you get run down and sick, things for your child will only get worse. Give yourself permission to pamper yourself even with little things such as a hot cup of tea. As living under the strain of a chronically ill, terminally ill, disabled, or special needs child is emotionally taxing, consider therapy for yourself. If therapy is not something you can afford financially or with the time it will require, even just journalling your feelings will help. Acknowledge to yourself that the position you are in is a difficult one and try to make time for things that bring you pleasure.

Ask for help. No one should ever do this alone. There may be friends and relatives who are standing by feeling helpless about the situation. It will make them feel like they are actually doing something if you give them ways to help. Ask for people to bring meals to your family, to help with your other children, to do housework, yard work, or anything else that will free up your time and energy to be able to better care for your sick child. If your family is failing financially under the weight of medical expenses, ask someone close to you to organize a fundraiser.

Parenting is a challenging job already but parenting a child with medical needs or other special needs can put too much strain on any family. Ask for help. If you do not have family or friends living close-by, reach out to your church or community agencies and ask what help they may be able to provide.

I have also written on helping your other children with their sibling’s illness so if you are parenting more than one child, you may find it helpful to read that as well.

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Today is Autism Awareness Day and it carries very personal meaning for us because our son Einstein is on the autism spectrum. Today, we wear blue to show our support and to help raise awareness.

Last year, we had an autism awareness week in our homeschool and used the symbol of the puzzle piece, the autism logo to create activities including a sensory bin and a special lunch. Today, we talked about how autism has affected Einstein and how wearing blue shows that we support him and that we want others to understand him better.

As the mom of a son on the autism spectrum, it has been painful to watch him be excluded from social events and to see him be misunderstood. It hurts me to know that he is left out and that others are missing out on getting to know him. It’s also been hard to watch him struggle to understand why he is different.

We have had significant success by putting Einstein on a gluten free diet though not all families report similar results. Autism continues to be something that affects our daily lives but I would say that the impact is felt more in terms of the response of others to Einstein than in challenges that we face with him. That is why awareness is so critical. Please show your support and wear blue today. But more importantly than wearing a particular colour, educate yourself, ask us questions, learn and spread the word so that by the time he is an adult, his condition is better understood and he can be better accepted.

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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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