Author: Natasha Boskic

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Introduction

Introduction

Many parents have told us that raising a child is like going on a journey with that child. There are many steps along the way as development happens. Some of these steps can be predicted and some cannot. Like a road, child development can take many twists and turns. It can bring parents surprises and joys, as well as frustrations and disappointments.

When parents are concerned about their child’s development and whether he or she is progressing as they believe it should, their journey with that child can be difficult and challenging. Sometimes children are not progressing as they should because of an identified developmental problem or disability. For other children, a disability may be very difficult to identify early in life even though it may be suspected because of a delay in development or behaviours a caregiver notices. Some young children are at higher risk for developmental problems. They may be progressing well, but their parents need to keep track of their development. Many of these children will continue to do well. Some will have learning problems or other developmental concerns. These concerns need to be identified as early as possible so the child may be referred for early developmental support in order to reach his or her potential.

Parents have told us that it can be very difficult to address their fears and worries that their child may have developmental challenges or a disability. It is hard to accept that your child may need extra help in achieving the developmental milestones compared with their brothers and sisters, or children of the same age. Parents have told us that they need information and support to help them understand their child’s needs better and to help other family members and friends understand as well. Parents want to know that they are not alone and that there are many other parents and service providers that are available to help them in this journey.

We know from recent research in brain science, from early childhood intervention literature, and from family stories that detecting developmental problems in young children early and support for the right interventions can make a very positive difference for children, their families and for society at large. Children thrive with the right kind of support and their families can address challenges as they come and manage family life with joy. Society benefits because early childhood intervention money in the long run. Less intensive and expensive interventions are needed when a child’s need are identified early and get the help they need in a timely way.

In this module, you will find help for parents, including information that may reduce unnecessary frustrations and concerns and lead them to resources that help them and their children.

During your journey as a parent you may go through many steps to learn more about your child’s development, why he or she is not progressing as it should, and what you can do about it. Every journey is unique—as unique as you and your child and family are.

Here are common steps that many parents have taken in this journey of discovery. You may pass through some or all of them.

This long road could (Fig. 1) resemble the long journey you are about to embark upon:

path through the forest

Figure 1. A long road

At times, your journey will involve smooth sailing. At other times it will not be easy.

It may involve tears, anger and moments of doubt. But the journey is worth taking.

The picture above does show a somewhat bumpy road, but the road leads somewhere, and it is surrounded by trees and greenery. The tree branches, on both sides sometimes interlock, and we see that as arms that are protecting those traveling on this road, or at least offering them shelter, at least temporarily. The arms could be your family (nuclear or extended), your friends, or your soon-to-be community partners. We hope that this course is one of the branches on this tree, offering you shelter and support.

There will be many stops along this road. Some points you will enjoy, others you may not. It is important to note:

  • You may not have to stop at each junction;
  • You may spend a long time at one junction and a very short time at another;
  • Some junctions will require your entire family to be present, others won’t;
  • Some junctions will have a lot to offer you and your family, others will only offer you one or two services.

It will be up to you to decide which junctions you would like to stop at, and how much time you would like to spend at each one.

It is our intention that this course will help guide you towards the right decisions you will need to make, that are right for yourself and for your family.

road

Figure 2. On a journey

The stops you make along your journey (Fig. 2) can be seen as steps towards reaching some of the goals that you have set for yourself, your child with special needs, your other children, and your entire family. The following is a list of some of the steps that you are likely to take.

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Step Seven

Step 7: This is my New Life

parent

Figure 1. A parent

Once you have found the professionals who will be working with you and your family, you are able to breathe. You may start to adjust to your life. You will start to realize that your journey will have positive and negative aspects, just the like the journey of any parent. You are likely to encounter a few more difficulties along the way, but you may also experience more rewards. Many parents of children with special needs state how having a child who is “different” has taught them to look at the world in a new way.

Please take the time to read the very well-known article ‘Welcome to Holland‘ that Emily Perl Kingsley wrote, a long time ago, about the experience of raising a child with special needs.

parent

Figure 2. A parent

Finally, we have heard from many parents, like you, that some people just do not understand how difficult your life can be. They wonder why you sometimes do not show up (or are late) for meetings. A parent wrote this wonderful article that we would like to share with you, having heard someone ask at a meeting “where are the parents?”

We would like to thank you for taking this course and hope that it has helped you, even if just a little bit. We developed it for you.

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Step Six

Step 6: Where do we Go from Here?

At this stage, you are likely to have a lot of questions:  about your child’s condition, where to go for help and how to find professionals who will help your child develop and grow.

Please know that you are not alone on your journey. Many other parents and families have gone down similar roads and are experienced travelers. They are available through websites, connections with Infant Development Programs and the Family Support Institute to be a guide by your side over the course of your journey with your child.

The website that is associated with this course has many links to resources created by other parents and professionals that are there to help.

There are a lot of support groups for specific conditions. There are also groups for parents of children with special needs in general. This  can help make this part of your journey easier to take.

The “general resources” section of our website includes a list of websites that can connect you with parents who have taken the journey that you are in the process of taking.

You can also visit the “Specific Disorders and Conditions” section of the our website, where you can find very specific information about your child’s condition.

child

Figure 1. A child playing

THE INFANT DEVELOPMENT PROGRAM  (IDP):

If your child is under three years old, your first experience with early intervention is usually through the Infant Development Program.

If you are Aboriginal you might want to check out the Aboriginal Infant Development Program.

If you get connected to the Infant Development Program or Aboriginal Infant Development Program, you will likely get assigned a consultant who will:

  • Help answer any questions you may have;
  • Visit your family every three to four weeks (on average) to monitor your child’s development;
  • Act as a connection between you and other professionals who will be working with your child (e.g. speech therapist, occupational therapist, physio therapist);
  • Help preschool or day care personnel accommodate your child into their classrooms
  • Lend you a variety of resources from their resource centers.

child playing

Figure 2. A boy

THE SUPPORTED CHILD DEVELOPMENT PROGRAM  (SCD):

If your child is over three and attends a day care center or preschool, your first contact with the field of special education could be the Supported Child Development Program, where you are likely to be assigned a consultant.

If you are Aboriginal, you might want to check out the Aboriginal Infant Development Program.

This consultant will:

  • Help answer any questions you may have;
  • Could visit your family every six to eight weeks (on average) to monitor your child’s development;
  • Act as a connection between you and other professionals who will be working with your child (e.g. speech therapist, occupational therapist, physio therapist);
  • Help preschool and school staff help your child in their classrooms;
  • Lend you a variety of resources from their resource centers.

toy

Figure 3. A toy

The process of finding the right professional to work with your child can be quite difficult and long. You will sometimes be able to choose those professionals (if your child has autism and/or if you are hiring them privately). Often, you will be assigned a professional from the agency that provides these services.

Your IDP and/or SCD consultants can be very helpful at this time. Their knowledge and connections in the field will allow you to make the right choice, for you, your family and especially your child, when it comes to deciding who will be working with your child.

When working with professionals, it is very important that you speak your mind about your concerns and what you want for your child. Research indicates that child outcomes improve greatly when parents and professionals work together, as equals, to help the child reach his or her full potential.

It might also be helpful for you to visit the “Professionals and Professional Associations” section of the website. There you can find information about how professionals operate in BC, and how they can help you and your child.

Many parents who are at this stage have said  they did not know where to go for help, or even if they should go for help. Many felt guilty every time they took a little bit of time off to take care of themselves or their other children.

Here is what one parent had to say, about this:

Debbie’s lesson to parents

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Step Five

Step 5: Is This Really Happening?

Now you know!

And you have mixed feelings about what you know.

Part of you could be relieved that you finally have answers. Another part of you could be angry or upset that your worst fear has now become a reality.

You may be very confused (Fig. 1) because you now know for sure, that you will need to make some changes to the way you and your entire family live your lives.

worried

Figure 1. Confused and worried

After you come to terms with your child’s diagnosis (something that could take a long time to achieve), the next big part of your journey begins.

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Step Four

Step 4: The Assessment Process

The assessment process can take several shapes. Whatever shape it takes, it is very likely that your child will be seen by more than one professional, from more than one field.

Some of the professionals you are likely to see are listed below. Please note that your child will not be seen by all of these professionals. Which professionals you visit and for how long will depend on the condition/disorder that your child may have.

It is important to note:

  • Your child will sometimes see one specialist more than once in order to complete the assessment process;
  • Some specialists will not have any answers for you, and they may end up referring you to “yet another specialist;”
  • Your child’s journey with some specialists will last beyond the assessment process, because they are likely to be the interventionists who will have an on-going relationship with you and your child.  

As stated above, this part of your journey can be the most painful because you will finally have your feelings confirmed (something you have kept hoping would not happen).

It may not always be easy to deal with these professionals. Some of them may even give you information that directly and completely contradicts the information that you were given by another professional.

Unfortunately, at this point in time in BC, and elsewhere, professionals who are part of an assessment team do not always work with each other.  This can sometimes result in mixed messages being sent to a family that is already going through a hard time.

We hope that this does not happen to you, but if it does, perhaps reading about the journeys of other parents could help you put see things in different ways.

Here is a websites where you can read about the journeys of parents like you.

  • Bandaides and Blackboards: This website is mainly for parents of children who are sick all the time, but what they experience could very easily be applied to the experience of all parents who have children who are developing in a different way.

worried

Figure 1. Worried
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Step Three

Step 3: Why is This Taking so Long?

The next step will likely involve screening and assessment. You may visit with a range of medical and health professionals to determine the cause of the delay. There are waiting lists for many health care services in BC for both children and adults, and these include many screening and assessment services. There are significant differences from community to community in terms of what is available.

Please remember that no matter how long the wait, the assessment process will start and that your child will be seen by a specialist. If you are able to do so, you might want to think of some questions that you would want to ask the specialists who will be working with and evaluating your child when the time comes.

line up

Figure 1. Waiting in line

Click here for help with a list of questions that you may need to ask those specialists

Sometimes a diagnosis is not needed in order to receive the services of many intervention programs like the Infant Development Program or the Aboriginal Infant Development Program. Staff in these programs will help you work through the screening and assessment procedures, and help you plan a program at home that will encourage your child’s development while you wait for investigations to be done.

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Step Two

Step 2: Why won’t Anyone Believe me?

Many parents describe this stage as being one of the most difficult things they have had to do. You may know your child needs extra help, but you may not being able to convince others. This can be quite frustrating and make you feel anxious. Some parents may even feel  that they are seeing a problem where none exists. When these parents do find the courage to express their concerns they sometimes are given false reassurances about their child’s development by family, friends and health care professionals. Sometimes they are even told that the child is fine, it is their parenting that is causing the child’s delay or behaviours. But for many children parenting has not caused the developmental delay or challenging behaviour.

The idea that a child is “fine” and that the parent is worrying too much for no good reason can be seen in the child who is exhibiting cognitive and/or academic delays. People notice behavioral difficulties very quickly, especially the externalizing type. They also seem to notice motor delays fairly quickly. But when a child has other “hidden difficulties”, such as difficulties paying attention or socializing, people, including doctors, often do not notice that the child is struggling, at least not right away.

You may feel that you are alone or that you are imagining things, even though deep down you know that you are not. There is a lot of research that suggests parents are usually right, when they feel that their child may not be developing typically (the Hebbeler report, 2007).

But you are not alone! There are child development questionnaires that might help you to gather information on your child in a way that may give you a clearer picture of his or her development. You can share this information with your family, friends and your family physician. This information can help you decide if there is a difference in your child’s development that needs to be looked at. This information can make it easier for your doctor and other health care professionals to recommend the next steps in finding out more about your child. If you do not know where to go, you can visit the public health unit that is closest to you.

Once your family doctor or your child’s pediatrician realizes that the concerns about your child’s development are valid and possibly true, the next step on your journey will begin.

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Step One

Step 1: Is my Baby OK?

If your child was born with a disability that is identifiable at birth (or prenatally) it is possible that you will not go through this stage. The diagnosis may have prepared you for the reality that your child may develop differently from other children.

You are watching your beautiful baby grow, but you have a feeling that something may not be quite right with the way your child is developing. You may get this feeling whether or not you have older children who may or may not be developing typically. It is possible that your concerns will be seen as “too much worry” by your family, friends, and even your child’s pediatrician. This will make you feel better for a while, but concern and worry may return.

This is the initial understanding or concern that your child may need extra help. His or her development is not proceeding as you believe it should and you are worried (Fig. 1).

worried

Figure 1. Worried

 

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