Setting Limits for Your Child with Autism

One of the things I learned in hindsight is the absolute necessity of setting appropriate limits for your child with special needs. My special child is now sixteen years old and I would like to share with you something I learned about setting limits and expectations.

In retrospect, I learned and would like to share with parents the need to have the same expectations about manners, saying hello and good-bye, saying please and thank-you that they would if their child was developing in a more conventional way.

I think that I made excuses for my son not saying hello or good-bye because of his “shyness” that I deemed as part of his autism. Only looking back can I say that I should have pushed him to say greetings despite his initial discomfort. He would have become used to saying hello and goodbye and this would have served him well as he interacted with his classmates at school when they attempted to greet him. After giving several talks at my son’s school to his classmates, they were eager and willing to say “hello” to my son and to attempt a conversation with him. Because I had never insisted that he say “hi”, he was not accustomed to saying a greeting back. Sure enough, after several weeks of trying to no avail, my son’s classmates soon grew tired and gave up trying to greet him or interact with him. As a result, my son missed out on opportunities for friendship, or at least opportunities for a friendly interaction from many of his fellow students, which could have enriched his school experience immensely.

I also realize, again in retrospect, how many opportunities I had over the years to ask my son to be helpful and participate in being part of our family by doing simple chores and increasing the complexity over time. Yet again, because I “felt sorry” for my son, thinking that he had been through enough in a day at school, I did not put any demands on him once he got home. Now, at sixteen, he gets very affronted when I ask him to do almost anything. I think it was very telling last summer, when we didn’t give into a demand, that he said “Don’t you know I get everything I want!” This could be humorous if it wasn’t true. By not asking him to do simple household chores over the years and increasing my expectations over time, he has now developed an entitlement attitude that everything should be done for him but that he does not have to do anything in return. Obviously, I am trying to turn this attitude around and have my son realize the importance of being a contributing member of his family, despite any challenges his autism may present. But honestly, at this age, it is a little like turning the Titanic around versus a speedboat.

So, my advice to you in this month’s blog is to teach your children to say “hi”, “good-bye”, “please”, “thank-you”, and if they cannot speak, teach them to sign it or use a PECS symbol. In addition, teach them to do small chores at home – set the table, clear the table, put away their clothes, make their beds, any chore you would ask another child to do. You may have to take extra time to teach the skill, but it is well worth the effort you make. Our children will grow into teenagers and eventually adults. They need these most basic skills to get along in life. Children with autism have challenges, definitely, but please don’t do what I did and make excuses. Have expectations and stick to it! You’ll be glad you did. What sounds passable and even cute out of the mouth of a child is down right rude and unacceptable coming out of the mouth of a teenager or adult. Keep the long term goal in mind. They grow faster that you think.

Toilet Training Your Special Needs Child

Parents often experience difficulty with toilet training their child with special needs. Many children with autism do not learn to use the toilet until much later than their conventionally developing peers. One of the reasons that special needs children may take longer to transition from diapers to the toilet is because of sensory issues. They may not understand that the full feeling they get in their bladder is a signal for them to go and use the toilet. This is a connection all children must learn to make, but for children with special needs this connection often takes longer. Parents need to be patient and implement additional strategies to encourage their child’s success.

For some children with special needs, there are sensory issues regarding the toilet itself. Some children have depth perception difficulties and the toilet looks like a tunnel with no bottom; understandably the child fears falling in. It is hard for many of us to imagine this perception but the fear is very real for the child. Some children are afraid of the loud flushing noise. Some children may be fascinated with the toilet but not for the purpose it was intended. They enjoy flushing, splashing the water and playing with toilet paper. Some may be fascinated with the bowel movement itself. These children need to be taught with sensitivity and patience and not be made to feel shame because of their lack of understanding.

All children have to learn to associate the sensation of relieving the full feeling in their bladder with going to the toilet. Children cannot make that association as long as they are wearing diapers. They cannot make the cause and effect connection without seeing the connection. Most parents who have success in toilet training their child with special needs will agree that they had to take their child to the bathroom consistently and frequently before this association was made.

When I was attempting to toilet train my son, he was already four years old and I was not having that much success at making the connection. I decided that the summer was an ideal time to master this important developmental milestone. It is socially stigmatizing for children to still be in diapers when their peers have been trained a significant number of months or even years before them. We are taking a risk that our children may be teased or bullied if they are still in diapers well past the age that children are typically trained to use the toilet.

I made the commitment to take my child to the toilet every 45 minutes, regardless of the setting. Most children with special needs benefit from visual aides. We used a picture script that showed the various stages involved in using the toilet and we posted this schedule right beside the toilet at home and at his nursery school. We also posted a picture schedule above the sink for hand washing. Picture schedules are simply photographs or picture symbols that show the sequence of steps that need to be accomplished. The pictures are numbered in the order they should take place and may be accompanied with words. Steps include: Pants Down, Sit on Toilet, Toilet Paper, Flush, Pants Up, Wash Hands. Hand washing steps include: Turn on Water, Wet Hands, Use Soap, Rub Hands Together, Rinse Hands, Turn off Water, Dry Hands.

Children who are non verbal can also be given a picture symbol card that says “go potty” on it. This enables the child to tell us that they need to use the toilet.

Fortunately, there are a number of books and videos that you can purchase or borrow from the library that teach your child about the toilet and its use. Some of these include: Once Upon a Potty (book and video), I Gotta Go! (music video), and The Potty Book. You can even create your own book using photos and personalize it for your child.

Please don’t stress your child about using the toilet. If you are taking him every 45 minutes to one hour, don’t let him sit there for too long, just a few minutes. If nothing happens, that’s okay, try again in the next hour. Eventually, you will have success. If you make it into a power struggle, if you scold when he has an accident, you may cause your child to feel shame which may be damaging and even extend the length of time it take for your child to use the toilet comfortably and proudly.

Using a reward system for toilet training is extremely useful. The child earns stickers or tokens for each time he sat down and tried to go to the bathroom. Whether he was successful or not, he receives a sticker on a daily/weekly chart. You can decide together what he is working toward as the big reward for sitting so many times that day. Sitting patiently and frequently should be noticed and that is where a sticker reward system is motivating. At the beginning, don’t reward too infrequently or the child will lose interest. At the end of the day, he adds up his stars/stickers and receives a small reward. As time goes on you adjust what you are rewarding accordingly. When the child actually has success on the toilet – let the party begin! Make a fuss, show him how proud you are. This is a big development and a big milestone. Don’t be shy about letting him know what an accomplishment this is for him. Persistence, patience, praise for trying will eventually lead to a child who is toilet trained. More importantly, it proves to you as a parent and to the child, that there are many other goals you can accomplish together and that this is only a beginning!

People for Education – A very useful website translated in 12 languages

In several days our children will be heading back for their second term of school. I wanted to share a wonderful website, People for Education, that I have found incredibly useful and I think you will too. People for Eucation is an independent parent-led organization, working to improve public education in Ontario's schools. Their suggestions for parents are translated in 12 languages and I think those translated tips for parents will be a real benefit to our families in St. James Town. Please see their web site. Examples include:

Special Education Tips for Parents – all students will have times when they struggle with schoolwork or with school life. But some students may need extra support from a special education program. Here are some tips of what to look for.

Parent Teacher Interviews – these interviews are held two or three times a year at the end of each term when report cards are sent home. They are opportunities for parents and teachers to talk together about how to help each child succeed in school. They are very short – usually 10 – 15 minutes. It’s important to prepare before the interview to make the best use of that short time. This tip sheet has useful suggestions to maximize the effectiveness of these important interviews.

Solving Problems at School – parents sometimes need to talk to the teacher about school work, their child’s relationship with another student or their child’s special needs. Most teachers are used to getting these kinds of calls from parents and want to help your child succeed in school. In Ontario, parents are encouraged to be key partners in their children’s education. But the system can be confusing or intimidating. Who should you talk to if you have a question or problem? This tip sheet answers these questions.

High School Courses and Choices – entering high school is an important time in your child’s education. The courses that students choose in grade 9 will have an impact on what they can study in later grades and after high school. This tip sheet is a first step to understanding those choices.

BENEFITS

I am very excited about this new opportunity to share with families in St. James Town information about resources and benefits that are available to families whose children have been diagnosed with a developmental disability including autism.

We live in a very big city and while that can be an advantage because there are a lot of supports available, it can be a disadvantage to know where to begin. I think a good starting place is for parents to become familiar with financial benefits that are available once your child receives a diagnosis. This letter of diagnosis is like a key – it opens doors to resources and funding that are not available to you or your child without it.

It is important to note that when you are applying for funding, or other agency support, a photocopy of the letter stating the diagnosis and signed by the doctor, must be attached to the application. Please remember to attach only photocopies of the letter of diagnosis to any applications. Keep your original letter of diagnosis in a secure place - you will need this letter for a number of purposes and it is not always easy to get another original letter from the doctor who made the diagnosis.

Once you have completed any application, always photocopy the application that you filled out and keep a copy for your records. Mark on the top of your copy the date you mailed the application. Keeping a photocopy is important for three reasons:

1) There have been instances where the application goes missing. If you did not take a photocopy, you would have to start all over again.
2)You may want to refer back to the application if you are speaking to someone at the Ministry or the agency about the status of your application. Your photocopy will assist you in referring back to what you requested.
3)The photocopy of your application will help immeasurably to refer back to when it comes time to reapply the following year.

What are you eligible for? This week I am writing about two types of benefits from the Ministry of Children and Youth Services (MCSS):

1)The Special Services at Home (SSAH) program helps children with developmental or physical disabilities to live at home by providing funding on a time-limited basis to address individual needs. With this funding, families can purchase supports and services which they could not normally provide themselves and are not available elsewhere in the community. Each family is unique. You will need to describe your family’s needs, establish your goals and indicate the type of assistance you need – whether it is personal development and growth and/or family relief and support. This time of funding is not based on your income – any family whose child has a developmental or physical disability can apply regardless of income.

2)Assistance for Children with Severe Disabilities (ACSD) – this is an unfortunate title because it makes parents feel that their child has to be “severe” in order to qualify for this funding. This funding is based on your income and not everyone will qualify. Financial and medical criteria must be met in order to receive this funding. This program provides help to assist with some of the extra costs of caring for a child who has a disability. The purpose of the benefit is to help children who have disabilities live as normal a life as possible at home and in the community. The extraordinary costs that are incurred must be as a result of the disability.

You are entitled to new funding every year. The SSAH and ACSD forms can be a little difficult to complete, at least the first time, so if you require assistance you can email or call Respite Services to find out when the next orientation session takes place. Knowledgeable staff will assist you in completing the forms.

Contact information:
For an application for Special Services at Home (SSAH) funding, call 416-325-0623.
Alternatively, you can go to the following website for further information:
http://www.children.gov.on.ca?CS/en/programs/SpecialNeeds/specialServicesatHome.htm
To download the application you go to:
http://www.children.gov.on.ca/NR/CS/developmental/1915.doc

For an application for Children with Severe Disabilities (ACSD) funding, call 416-325-0623 to see if your family qualifies for this benefit. As stated previously, this benefit is based on your family’s income.

For assistance in completing the application(s), contact Respite Services.com at 416-322-6317 or go to http://www.respiteservices.com
They will advise you of upcoming dates for orientation sessions to assist in completing your family’s application.

Next time I will write about the Disability Tax Credit another source of benefits for families whose child(ren) have a disability.

About Lee Steel

I am the parent of a wonderful fifteen year old son who has Autism. I am the Parent Liaison at the Autism Research Unit, The Hospital for Sick Children. In this role, I support parents whose children have been diagnosed with an Autism Spectrum Disorder. I have over four years experience working in the St. James Town Community supporting families whose children have special needs. I understand the many challenges that parents often face trying to find suitable support for their special children within the community and school settings. Parenting a child with special needs is an opportunity for growth not just for our children but for ourselves.

Supporting Families with Special Needs in Our Community

Families with children who have special needs require additional support within their community and schools. There is so much we can do for our children with special needs but sometimes it is difficult to navigate the many resources available. Sometimes we need to talk with other parents who have been through similar challenges and learn what they have found helpful. As parents we need to "speak for our child until he/she can speak for themselves". This does not mean our children cannot speak, it means that we must advocate and speak out for the services and settings that foster our children's social, emotional and physical wellbeing.