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Now, let’s dive into the interview…
Tell us a bit about your daughter’s special needs?
‘My daughter is now 17 years old, and she was born with a chromosome disorder which is not carried by either myself or my wife. While there are a large number of possible outcomes associated with the condition, my child is primarily affected by moderate learning difficulties, ADHD and ASD.’
How old was your daughter when you found out about her special needs?
‘We found out our daughter had a cleft palate when she was born. During that first year, we had to attend a lot of tests, and at the age of 2, she was diagnosed with a chromosome disorder which were likely to result in learning difficulties and potential health problems. Over the following years it became apparent that she had been spared some of the health issues that are associated with the disorder, primarily affecting the heart and immune system, but did have a learning delay. As she grew, this was better diagnosed as a moderate learning difficulty. She was also diagnosed with ADHD during her primary school years and, in her teens, with ASD.’
Do you receive any regular help and support?
‘Our daughter does not receive any regular support outside of her education environment. She does not have significant health issues and her level of learning difficulty means that she has some independence. She has support inside her education setting as required by her Education and Health Care plan. She does not have a social worker or, currently, any assistance with her future situation.’
Is this support sufficient, and how does it help you on a daily basis?
‘The support she receives in her academic situation is sufficient for her academic needs. However, it is becoming apparent that additional support is going to be required in order for her to find employment and to live, at least semi-independently. These areas are currently not addressed and we are concerned that there is little understanding of where this support might come from to deal with these areas.’
Realistically, what type of help would be really useful?
‘Social media coaching :). Our daughter spends a lot of time on social media but can struggle to understand how to manage friendships and when she might be in danger of being exploited.
Our main concerns now relate to her ability to find work and where she might live. She is capable of living in a semi-independent environment where she might receive support with budgeting and shopping. She would, however, be able to look after herself in a self-contained flat. Assistance with identifying and applying for this type of assisted living would be very useful.
Finding work without additional support is going to be a challenge. Our daughter will need to be placed into an understanding environment with sufficient scaffolding to ensure she learns the responsibilities she will have. We believe that, once she has mastered the basic requirements of a role, she will be able to undertake the work without close supervision. We do not currently see anywhere that can help in this way and she is not receiving this type of support through her college.’
Does your daughter have any future dreams?
‘Our daughter wants the same things most people want. A job, a home and a family. Given her needs the likelihood of her being completely independent is small. It is clear that she will always need help with money and budgeting for example.’
What are you most proud of and why?
‘Seeing our children stretch themselves further than others believe they can. Having two children with needs has meant a readjustment of expectations. With this has come a realisation that the effort required for them to achieve their goals is significantly higher than that for a typically developed child. It is a source of immense pride to see how they have overcome obstacles and how they maintain an optimistic outlook (most of the time!).’
Would you say there are any negative aspects of having a child with needs?
‘Accepting that there are limitations placed on what they can aspire to and having to make them aware of it. This can be a very difficult conversation to have because they only want the same things that other children want. Telling our daughter, for example, that she is unlikely to ever get a driver’s license is a very difficult conversation to have. After all, she has grown up seeing us drive and assuming that one day she will do the same thing.’
On the flip side, what are the positives of having a child with needs?
‘There are moments of great humour and, as I said earlier, immense pride in what they do achieve. It is also a fact that you have to learn and adapt a lot more, and more quickly, if you have a child with needs. In this way, your own personal development is tied more intimately with your child that is normally the case. And it’s not like it ever stops either, the shape and size of the next hurdle just changes.’
If you had a magic wand, what would you change in the world?
‘Everyone would automatically get the support they need to have the life they want. This sounds almost self-evident but the difficulties with achieving this are huge. The right level of support has to exist, and in today’s cash-strapped public sector, this is difficult to achieve. It has to be communicated, this is often poorly done, and it has to be a simple process to access the support, again, this can be more difficult than it should be.’
What is your one biggest tip to other parents who have just found out their child has a special need or disability?
‘Gain all of the information you can, especially about the help that you can get. Remember you don’t have to do this alone. Find out what is available to you – and there are many sources to choose from, government, local council and charity or non-profit organisations. Support groups can be a great place to learn about other people’s experiences and what they did to help their child.’
How would you, and your daughter, feel more supported by those around you?
‘It would be helpful to have family more understanding about my daughter’s needs rather than ignoring, being irritated or being overly optimistic about them. It’s been quite an eye-opening experience to see how our families have coped with our children’s needs and the outcome is really “not well”. It would be great if they could have accepted that our children have needs, worked to understand what those needs were and then decided how they might best support us. This has not been the case, however, and we have been largely unsupported.’
Looking to the future, what are your views on the prospects of your daughter getting paid employment?
‘Given the right role, the right support and the right environment I fully believe our daughter could hold down a paid job. She has demonstrated her ability to do a full day’s work by volunteering one day a week at a local business and has done this for the past three years. She appears to be well liked by the other staff and, when we have visited her, appears to have been performing her assigned tasks diligently. With the right support, and an understanding employer, I believe she could be successful in a job.’
Share your own experience with special needs
If you are interested in doing an interview with me on the subject of special needs, I would love to hear from you. There are various interview formats, and you can pick an interview style to suit your preference. Check out the interview formats and procedures here.
By Tina Elven
with thanks to guest interviewee