When most people think about ‘additional support needs’ and ‘additional learning needs’, they usually think of two things:
1) support 2) children and young people
This may be because the word “educational” tends to be associated with school and or university, and again – young people. However, behind every child there is some type of primary caregiver, whether that be biological or not. And whilst having additional needs can be distressing and difficult for the young people experiencing them, we must not forget that their caregivers will also have support needs. This is because unfortunately, these support needs are often overlooked in place of the needs of the child they are caring for.
When looking into the support needs of parents/caregivers of children with additional needs, we came across a whole heap of challenges and considerations that impacted the experience of caregiving. These challenges and considerations often made the process of caregiving quite complex, and differed depending on the type of additional need, and the family’s circumstances.
Today, we are going to take a birds-eye view of the support needs of parents/caregivers raising a child with additional needs. To do this we have engaged in lots of conversations with parents and caregivers of people who have additional needs and separated the key themes that arose into three sections (beginning, middle, and end).
Now, we know that care and support doesn’t typically fit under such headings, but to help make the information digestible, we have categorised it in this way.
Keep reading to find out more:
The beginning:
Many of the parents/caregivers we spoke to were in a position where they had found out their child had additional needs, shortly after their child was born and some had found out years later. Most described having a hunch that something was not quite right with their child’s development.
For example, realising that things were progressing slower than they did in the parenting books, or than they had with other children in the family. In terms of support, they mentioned the first need as being support for coming to terms with the fact that their child may have additional needs. Following this, many identified the need for support in convincing a health professional to take their hunch seriously.
One parent described it as being like going into an “election campaigner mode”. She explained that it can feel like there is no light at the end of the tunnel, and can feel just as exhausting as a physical fight.
The next need for support that stood out was the need for support around the decision to get a diagnosis or not. Some parents/caregivers expressed their worries and concerns about “labeling” their child, and worries about any negative future impacts on their child’s life. It seemed like (for some) this was a very heavy and potentially life-changing decision, that they did not feel comfortable making without more support.
The Middle:
The themes that came up around support in “the middle” seemed to be around settling in and supporting others. A lot of parents/caregivers reported using their struggle and information/experience gained in the beginning stage, to help others entering the beginning stage. And to help people who were also like them, in the “middle stage”.
Another common theme in this stage was life centering on the support needs of the child, and there being little time for respite for the parents/caregivers. Some even reported feeling guilty when taking time for respite.
One parent told us that he often spent his time away from home, worrying about how his child was doing. So, he ended up being there mentally rather than physically. This meant that he didn’t feel like he had had a break when he got back
Then there were mentions of the strains that the journey had on “normal couple behavior” such as spending time together or being intimate. And in some cases, there had been arguments about what school the child should go to once they reach school age.
The End:
This title is a bit of an odd one, because for many of the parents we spoke to, there wasn’t really an “end as such” to the care needs for them or their child. Many reported this part of their journey as a place of routine and or stability. A place where they had got used to the intricate complexities of their child’s needs, found ways to incorporate time for their own needs, and the feelings of being an “election campaigner” had largely subsided.
However, for some of our parents, there was an “end” in that their children had been able to learn how to fend for themselves, or got to a place of autonomy where they could live alone/start to engage in activities by themselves.
In both of these cases, the support needs may have been less than they were at the beginning, but they were still there. Parents reported difficulties resisting the temptation to fall into old habits, and not keep an eye out on how they were doing emotionally, physically, and mentally. They also reported having to remind themselves to keep an eye on their own needs. And mentioned roping in friends and family to help them remember.
As you can see, there are so many aspects to consider when it comes to supporting parents/caregivers raising a child with additional needs. And because of this I am sure we have not been able to cover them all. However, we hope that we have been able to highlight at least some of the areas where support is needed. Keep an eye out for more articles on this topic as we delve deeper into the support needs of these parents/caregivers..
