Category — Introduction

As you may have read in the birth to six part of this course, we have heard from parents and read in the literature that raising a child with special needs can seem like going on a long and sometimes difficult journey. This road can have many twists and turns, some easy and others difficult. The twists and turns are sometimes expected and other times completely unexpected (Fig. 1). It is likely that you will continue to experience these twists and turns in your child’s middle childhood years. The important thing is that not all of these twists and turns are negative. Some can be positive. A negative twist could be discovering that your child has an additional special need or medical condition. For example, a child with ADHD can sometimes also be diagnosed with ODD, and vice versa. A positive twist could be discovering that your child who has been diagnosed with a learning disability is also gifted. He or she may have a learning disability when it comes to reading, but may be gifted when it comes to math or musical ability.

Figure 1. Unexpected

Not all children who struggle in the early childhood years get diagnosed with a special need or condition. Some show delays that are not serious or extreme enough to warrant a diagnosis. For these children, help and resources may be scarce. Access to professionals, such as speech therapists, may be close to impossible to get. That is because accessing professionals may only come after a referral from a family doctor or pediatrician. If the child is not delayed enough, medical doctors may not want to make such a referral. The family is left having to access professionals from the allied field privately. This can be quite expensive. A term that is sometimes used for children who exhibit mild delays is “children in the grey area” Some eventually catch up with their peers and do just fine. Others do not catch up with their peers and the developmental or academic gap between them and their typically developing peers keeps getting bigger and bigger. For these children and their families, the only help available may be through the internet and/or parent support groups.

If your child does have a diagnosis, your journey probably started when you suspected that your child was not developing typically. You have already gone through a number of steps along this long journey. This is sometimes referred to as “going on a trip to Italy and ending up in Holland”. You will likely go through a few more steps on this journey now that your child is in middle childhood. For instance, your child has now gone through the transition to school and may be starting kindergarten or grade school. We have heard from many parents that this transition is not easy. Getting used to the school system, working with school staff, making sure your child continues to get the services that he or she has been getting and making sure your family stays together as a unit is not easy. Most parents say that there are many obstacles on the road to school entry, but the effort is worth it because at the end of that road there is a child with special needs attending school. It may not be the school that this child’s siblings are attending, and the child may be in a separate classroom, but this child is exactly where he or she should be: in school, just like everyone else.

We have heard from parents and read in journal articles and book, that the middle childhood years are in some ways easier than the early childhood years. In other ways, they are more difficult than the early years.

In fact, at times, the middle childhood years can be easier because parents are now part of the special education “family”. They have met many professionals, such as speech therapists and occupational therapists that they otherwise never would have met. They have met members of the medical community, such as geneticists and orthopedists that they otherwise never would have met. They know what an Individualized Education Plan (IEP) (see full Glossary) is. They know what an SEA (Special Education Assistant) or EA (Education Assistant) is. They also know that they are their child’s biggest advocate.

The middle childhood years may be more difficult because your child may now be expected to learn difficult and abstract concepts such as reading and writing. At the same time, he or she may not be able to participate in certain extra-curricular activities, such as soccer, like other children (Fig. 2).

Figure 2. Playing soccer

Also, many children with special needs have more than one diagnosis. For example, in addition to having autism or an intellectual disability, some children also get diagnosed with a mental health condition, such as obsessive compulsive disorder, sometime during their middle childhood years. This means going through the assessment and diagnostic process again–something that no parent wants to do.

In this module, we hope to capture some of what parents of children with special needs between the ages of six and twelve go through or have gone through. We hope that this module will help guide you through the incredible journey that you have already embarked upon. We hope it will give you hope and confidence that your child is ok and will be ok, and that you are not alone on this long journey.

There are many stages parents go through during the middle childhood years of their child with special needs. Not everyone goes through all the stages, and you may go through stages that are not listed here. You may spend a lot of time at stage and no time at all at another stage. At some stages you may need all members of your family while at others you may not. Every family’s journey is special and it can never be captured, in all its intensity and uniqueness, by the words that are part of this course, or any course. All we hope to do is offer you some insight as to what some parents of children with special needs may have gone through, in the hopes that it will help guide you through the journey that you have already embarked upon.

Here are some of the steps or stages that parents may go through during the middle years in their child’s life.