Author: Natasha Boskic

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Conclusion

Conclusion

And in conclusion…

In an article called “Where are all the parents?” author Sue Stuyvesant, herself the parent of a child with special needs, heard from a friend that some official at a local school PAC (Parent Advisory Committee) meeting was wondering why there weren’t more parents of children with special needs at the meeting. In response to this insensitive remark, Ms. Stuyvesant wrote a marvelous article about where the parents of these special children are. She lists a number of places and situations that keep parents like her from attending school PAC  and other meetings. She listed examples like diapering a teenage child who is still not toilet trained, waiting in emergency rooms while their child tries to overcome yet another medical crisis, and trying to keep their family together. Basically, what Ms. Stuyvesant said was that parents of children with special needs are busy just trying to survive in a world that is not very welcoming of their children and most children with special needs.

The feeling that children with special needs are not welcome in society, at least not totally and certainly not by everyone, is echoed by many parents of children with special needsBetsy, the mother of a beautiful boy named Samuel who has cerebral palsy, also stated in the video “Including Samuel” that she sees a world that is not very welcoming of her son and other children with special needs (Fig. 1). One parent of a child with special needs, Tina Yows, wrote a disABILITY prayer, in which she prayed for those who are truly disabled: those who only see what is “wrong” in others and those who can only hear what is “wrong” with others instead of seeing and hearing the good and ability that is in all of us.

Including Samuel

Figure 1. Including Samuel

The truth is, children with special needs are still not fully accepted by society. They are more welcome in some parts of the world than others, but it seems that there is no society anywhere on this planet that is fully welcoming and supportive of children who are different. So we must work harder to ensure we do everything in our power to make these special children and their special parents feel welcome in society, where they rightfully belong. It is our hope that this course will be a first step towards a greater understanding of special needs, and a greater acceptance of those who have them (the children) and those who take care of them (the parents) (Fig. 2).

inclusion

Figure 2. Inclusion

THANK YOU! The “Including all Children and Families” team.

References
Ferrell, K. A. (1985). Reach Out and Teach. New York, NY: American Foundation for the Blind.
http://ricklavoie.com/
http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/deblesson.html
http://www.tsbvi.edu/seehear/summer99/parents.htm
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Step Nine

Step Nine

Your rights as a parents: here is what Kkay Ferrell (and others) have said

In her excellent book, Reach Out and Teach (1985), Kay Ferrell listed a Bill of Rights for the parents of children with specific special needs. Although the list was developed for parents whose children have vision loss and/or multiple handicaps, we feel that parents of all children with special needs have these special rights. These special rights include the right to seek a second opinion, the right to keep or stop trying to intervene with a child, and the right to just be parents.

You also  have a right to choose which intervention technique or method you wish to use with your child. You also have a right to stand up for yourself, your family, your children with special needs and your typically developing children. You also have a right to take good care of yourself. This could mean something like going away for the weekend without your children. It could also mean something such as getting a pedicure or playing a game of golf with your friends. As one parent who posted her story on the Bandaides and Blackboards website stated: running yourself ragged will not help anyone, not you and not your child with special needs.

Finally, you have a right to do whatever you feel you need to do  to keep your family together,   to help all your children the best way you know how,   to maintain your sanity, and finally,   to be ready for the next step in the life of your family!

family

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Step Eight

Step Eight

What kinds of resources are available to me?

It is important that you know that there are resources available to you, both within British Columbia and in the world. Most of these resources are available online and they can really help you understand your child’s diagnosis and the treatment options that are available for this diagnosis. You can also connect with parents support groups either online or through websites dedicated to specific disorders, such as cerebral palsy or epilepsy. Here are a few resources that are available to you:

in the office

This modules are part of a website that contains a lot of information that you may find useful, either because your child has a diagnosis, or because he or she does not have a diagnosis but is still struggling in school or with his or her social skills. Here is what the website has to offer:

We have compiled these resources to make your life a little bit easier and it is our sincere hope that they will!

 

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Step Seven

Step Seven

My other children sometimes seem to resent their sibling with special needs

sibling

If you have more than one child, you may begin to notice that your typically developing children may show certain negative feelings towards their sibling with special needs. Some of these feelings may include:

  • Resentment: they may resent their sibling with special needs because you may be spending  a lot of time with him or her. They may also resent this sibling because they may feel that he or she is allowed to get away with a lot of things that they themselves are not allowed to get away with;
  • Shame: they may be ashamed of their sibling with special needs. They may wish that this sibling went to a different school;
  • Envy: they may feel jealous of this sibling because of all the attention that he or she may be given by you as well as other members of your extended family, especially the grandparents;
  • Guilt: they may feel guilty because of the feelings of resentment, shame or jealousy that they may have towards their sibling.

It is important to remember that your typically developing children are children. They may have had to grow up a little bit faster than other children, but they are still children. What they may be feeling is a natural process that many siblings of children with special needs go through. This will pass and your typically developing children will most likely turn into extremely caring and empathetic adults. But for this to happen, they need your love and support. Here is how you can support them:

  • Acknowledge their feelings, whatever these feelings are. No one can control how they feel. We can only control what we do with our feelings. Explain to them that everyone has negative and positive feelings, and that all feelings can change;
  • Explain to them why their sibling is getting more attention from you and others. Let them know that this sibling is getting this extra attention because he or she needs it. Let them know that if need this extra attention, they will get it too. And most important of all, let them know that more attention does not mean more love. You may be spending more time with their sibling with special needs because they need that time, but you love all your children equally. They all have a very special place in your heart and nothing will ever change that;
  • Encourage them to attend support groups for siblings of children with special needs. Such support groups are available in person and online. They can be quite helpful;
  • Let them know that they can come to you with any feelings or questions that they may have. Let them know that no question is off limits, taboo, or forbidden;
  • Finally, keep telling them how much you love them. No one gets tired of hearing that they are loved even if they say so. It is better to hear children complain that they hear “I love you” too much, than to hear them complain that they do not hear it enough!

father and daughter

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Step Six

Step Six

What about the school-based team? How do i work and collaborate with them?

Working with a school-based team may seem difficult at times. After all, these are the professionals. These are the experts. These are the people who went to school for a number of years, and attended all kinds of workshops  to learn about the special need that your child has. You must always remember that you are an expert too. You know your child best, and that makes you just as much of an expert as they are. Another important thing to remember is that you and your child’s school-based team are on the same side. You may not agree on how to proceed towards the next step in your child’s educational life. You may not agree on what works best for your child. And you may not agree on how far your child will go in his or her educational or developmental journey. But you can all probably agree on one thing: you all want what is best for your child and you all want this child to succeed (Fig. 1). People who go into education, child development, early intervention and special education fields are a special group of people. They want to work with other people. They want to help children. They have chosen careers that may not pay well and that often go unappreciated.

girls in the classroom

Figure 1. Students

Sometimes we hear seriously uninformed individuals say that all early childhood education teachers do is “babysit” children.

But we know that this is not true. We know that the vast majority of teachers are extremely dedicated individuals who work very hard, and who often take the job home. Many of them are people who are under-appreciated. And yet many of them continue to do what they do, often with extremely limited funding, and even more limited resources. This is the group of people with whom you will be working and collaborating. They are your allies. They are there to help you and your child. You may not always agree on everything, but you all have one goal in common: offering your child the best that can be offered.

Here are a few ways you can make working and collaborating with the school-based team or any intervention team more successful, more effective, more efficient and even more enjoyable:

  • Try to keep in mind that the team is here to help you and your child. Listen to what they have to say. You do not have to follow through with what they say if it does not make sense to you. But do listen to them. See where they are coming from. They may offer you a solution or suggestion that you may not have thought of yourself;
  • Let them know how you feel about what they have to offer. Be honest. Communication is best when it is open and genuine. Do not be afraid to disagree with what they have to say. Let them know that you are not disagreeing with them, but you are disagreeing with what they are saying. In other words, this is not about them or you. It’s not personal. This is about what methods will work best for your child;
  • Come to meetings prepared. Make a list of everything you wish to discuss with the team. If you can mail or email them a copy of what you would like to discuss at the meeting ahead of time;
  • Be ready for disagreements. They are a natural part of any honest and open discussion. Disagreement often means real communication. Hopefully, you and your child’s school-based team will reach an understanding.

Resources: Multicultural worker support and translation services are available for most districts – Canadian Ministry of Education

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Step Five

Step Five

The assessment process is over, what do I do now?

Once the assessment process is over, you may not have to start from scratch this time around. Your child’s school-based team may already be in place. There may already be a team of professionals working with your child. The professionals and school-based team will read the reports sent to them by the professional who assessed and diagnosed your child. The school-based team will hopefully incorporate the professional’s recommendations into your child’s existing Individualized Education Plan (IEP) (see full Glossary). The professionals who work with your child may also include the professional’s recommendations into their intervention plans.

It is important to note that none of this can possibly happen without you and your input. You have built an equal partnership  with all those who work with your child. It is made up of a team of experts, each in his or her own way:

  • The professionals who work with your child (for example, the speech therapist) are experts when it comes to their area of expertise;
  • The clinical psychologist who assessed your child is an expert when it  comes to diagnosing children and when it comes to the condition that your child has;
  • The school-based team has experts when it comes to how children learn, how the classroom can be adapted to accommodate your child and how instruction can be modified  for your child to learn;
  • Finally, and most importantly, you are an expert when it comes to your child. No one knows your child better than you do, not now and not ever!

If what is happening with your child is medical rather than developmental or educational, here are a few points to remember:

  • The “intervention” plan could mean placing your child on medication, either temporarily or permanently, or modifying your child’s diet  to avoid allergic reactions;
  • You may need to hold a meeting with your child’s school-based team  to inform them about the medication(s) that your child will be taking and any possible side effects that this type of medication may have. For example, if your child must take his or her medication in the morning before going to school, and if the side effects of this medication are drowsiness or grogginess, the teacher will need to make sure that he or she does not schedule exams during the time that your child is experiencing these side effects (Fig. 1).Whatever you decide to do, it is our hope that you will know, through this course and through other resources, that you are not alone. There are people who are available to help you with whatever you need. Some of these people are professionals and others are parents like you. Please scroll down and visit the “what kinds of resources are available to me” section below to learn about some of these resources.

medication

Figure 1. Medication
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Step Four

Step Four

What will the assessment process be like, this time around? How long will it take?

In some ways, the assessment process you go through this time around will be very similar to the assessment process that you went through the first time around. In other ways it may be quite different.

It will be similar in the following ways:

  • You know what to expect for referral wait times. It may take up to a year for your child to be seen by the appropriate professional;
  • You may already be familiar with the paper work that will need to be filled out and filed  for the referral and assessment processes to begin;
  • You know about some of the professionals who may be assessing your child, including school psychologists and clinical psychologists;
  • You may already know what to expect from the report that will result from the assessment process. It will likely contain information that you may not understand. It may include words and terms you are not familiar with. But this time around  you will know where to go for help with interpreting the results in the report;
  • You may not know anything about the condition your child may have just like the first time around. You may have to conduct your own research  to learn as much as possible about this new condition.

It may be different in the following ways:

  • You may not know about some of the professionals who will be assessing your child. For example, this may be your first time seeing a psychiatrist, who diagnose your child with a mental health condition and prescribe medication for your child;
  • You may now have support from the therapists who are already working with your child. They may write a report that summarizes what they do with your child and why they may suspect that your child may have another condition affecting his or her growth and development;
  • You may have the support of the school-based team if your child has one, or at least your child’s teacher. The team, or teacher, may be willing to write a note detailing what their concerns may be and what they may have observed in the classroom. They may even be willing to fill out a few forms that may be sent to them by your child’s clinical psychologist or psychiatrist;
  • You may have the support of a parent support group. They can help you advocate for your child and fight for him or her if need be.

If what is happening with your child is medical rather than developmental or educational, here are a few points to remember:

  • The assessment process could consist of medical tests, such as blood (Fig. 1), urine and other types of tests, rather than tests or assessments conducted by a clinical psychologist;
  • You may need to visit more than one medical specialist to determine what is happening with your child, and to rule out other diseases that may have the same symptoms that your child is displaying.

blood test

Figure 1. Blood test

Whatever happens during this time  it is, we hope, for the benefit of your child. If your child does in fact have a secondary condition or special need, it is vital that this special need be identified and addressed. This will help your child function well in school, at home and in the community.

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Step Three

Step Three

What if people and doctors don’t believe me, when i say that there is something else happening with my child? It happened before, what if it happens again?1

Parents often state that their worries are sometimes dismissed by their friends and family. They are often told that they “worry too much” or that their child is “just fine.” They are sometimes told that they are just being over-protective of their child or may be told that it is “all in their head.”

We know parents are usually right when it comes to your children. The concerns that you have about how your children are developing are usually valid and legitimate. Professionals from both the allied and medical fields need to understand this. Some of you may spend a lot of time with your child. Some of you know your child inside and out. You may not know much about child development, but you do know your child better than anyone else. In fact, you are the experts in charge when it comes to your child. While some people may not have believed you, you still got your child assessed and diagnosed, and got your child the services that he or she needs.

If you are concerned there may be something else happening with your child, follow your heart. Do not give up. Some of you have been right before and chances are you are right again. We know that many children with special needs have more than one diagnosis. We also know that the secondary diagnosis often takes place sometime during the middle childhood years.

Here are some steps that you can take to make the referral process a bit easier this time around:

  • Read the Module 2 sections of this course: the birth to six part and the six to twelve part;
  • Talk to the therapists currently working with your child. They know your child well. They also know quite a bit about special needs and co-morbid conditions;
  • Talk to your family doctor or your child’s pediatrician. They were probably involved in the referral process the first time around, and they may be more inclined to believe you this time around;
  • If your child is already in school, talk to the school’s special educator or school psychologist;
  • Finally, and perhaps most importantly, talk to other parents of children with special needs, especially those who have older children with special needs. There are a number of support groups available to you so seek them out and talk to them. Other parents of children with special needs may be your biggest allies. As Rick Lavoie (2008) stated in an article , these parents “are a remarkably generous group”. They will be able to help you.

It is important to note that what is happening with your child may be medical rather than developmental or educational. It may be that whatever condition he or she has is a disease, rather than a disorder. This means that your child may need to be placed on medication. It can also mean that your child may need to be placed on a special diet because of allergies that he or she may have developed.

1 see https://blogs.ubc.ca/earlychildhoodintervention4/
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Step Two

Step Two

I think something else is happening with my child: am i going to have to go through the same process again?

Your child may now be displaying symptoms or engaging in behaviors that are new. You ask around and you realize that these symptoms and behaviors are not part of your child’s condition. You may do research or listen to the professionals already working with your child and  learn that many children with your children’s condition end up getting a secondary diagnosis sometime during the middle childhood years.

Here are a few examples:

You may not know what to do or where to go. You may not have been prepared to go through another phase of referrals, assessments and diagnoses.  You may also worry that professionals in both the medical and allied fields may not believe you, just like some of them may not have believed you when you were going through the assessment and diagnosis processes the first time around when your child was under six years of age.

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Step One

Step One

My life is slowly getting back to normal

You may now know what your child’s condition is and have an explanation as to why he or she behaves the way he or she does. For example, you may now know why your child does not like the sounds of ambulance sirens or the vacuum cleaner (Fig. 1). You may also know  why your child seems to be slower than others his or her age when it comes to learning new things.  Taking your child to therapy sessions and going to meetings with members of the medical field may now be part of your routine. Therapy sessions usually happen on a weekly basis, and meetings with doctors seem to happen once or twice a year. You may not know if this will ever stop. But it is now part of your new routine. Life goes onand therapy sessions become as routine as soccer or going to the grocery store. Your life is not the same as that of other parents but it is your life. You and other members of your family have made it your own and it has become the new normal.

covering ears

Figure 1. Covering his ears

Sometimes, just as you starting adjusting to the new routine something happens. Your child starts displaying behaviors that he or she has not displayed before. You are not sure if these behaviors are part of your child’s condition.  You may start to wonder if something else may be happening with your child.

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