Get Involved: The Special Needs Auntie's Guide to Making a Difference
You have a special needs niece or nephew and you've read our top 5 tips every special needs auntie should know, so now what? How will you apply all your knowledge and really make it count for that special angel in your life? Here are 5 things you can do to actively take part in your special needs niece or nephew's life:
Prepare
When others ask questions about your niece/nephew when you are with him/her, such as "What's wrong with him?", or "Why is he in the corner, is he okay?",it's a good idea to have a prepared response that you can whip out when needed. The first step in preparing such a response is to talk to your siblings, and seek to understand what they want said about their own child. Not only will they be able to tell you how they want their child to be portrayed, but they will also have ideas in how to handle these situations as they come up. This could be a subject that your sibling might not think of bringing up, so don't be afraid to ask. When you make your move and try to answer questions, try to gently explain to the person asking while off to the side and not in front of your niece or nephew, but you also will likely not want/need to go into a big long explanation with that person. You don't want your niece/nephew to be treated "differently" or excluded in any way, but on the other hand, in certain situation it's nice to have others aware of what's going on, so that they can have patience and understand that your niece/nephew is acting differently for a reason.
Understand
Challenge yourself every day to find a way to communicate with your niece or nephew and understand the little world in which they live. Know the struggles and obstacles that he/she has to come up against on a daily basis, and learn to be patient. Be cognizant of the difference between a child that is throwing a "normal" tantrum and having a bad day, and one that is simply unable to control their emotions, thoughts, impulses or body. Remember that your special needs niece/nephew likely has a hard time processing the world around him/her, so continue to ask your sibling question after question to ensure you are informed about everything your niece or nephew is experiencing in each moment, so that you can better care for the little prince/princess.
Advocate
Help your sibling fight for his/her special needs child, and support him/her along the way to finding and securing the services the child needs. There is a huge process that special needs kids and their families go through to get support and services to allow the child to develop, recover, and grow. Let your siblings add you to their arsenal. You can and should become well versed in the evaluations, IEP meetings and doctor visits which will likely be too numerous to count. Usually there is so much emotion involved in these matters when it is your own child that the process becomes overwhelming and often paralyzing. You can be the other voice, the other witness for your niece or nephew.
Visualize
You will likely find yourself wanting to give gifts to your siblings and your special needs niece or nephew, and it's important to think about the child and his or her parents when giving gifts. For example, it may sound like a wonderful anniversary gift to buy your sibling and his or her spouse a trip somewhere to "get away", but is this something that they could really enjoy? For many parents of special needs children, getting away would mean preparing the child for weeks prior to the getaway and working on the transition over and over, only to have the child completely regress from being away from his/her parents thereby making the getaway more grief and risk than it's worth. Or maybe you've been considering throwing your special niece or nephew a surprise birthday party, but you realize that maybe the child would be completely overstimulated and overwhelmed having such a big thing sprung on them without preparation. These things vary from child to child, so imagine and visualize what impact your well meaning gift will have, and give what is actually wanted or needed.
Accept
Let go of any expectations you might have of your niece or nephew to be that "perfect child", and accept them for who they are. This seems like an obvious thing, however sometimes we don't realize when our expectations are out of sync with what the child's actual abilities are. For example, you may get really excited and plan a whole day of "fun" for your niece or nephew, only to watch them have a complete meltdown in the car on the way, and you have to turn around and take them home to calm them down, ending your fun day before it began. It's easy to be disappointed and have wonder why it had to happen the way it did when you had the best of intentions. But it's important to remember that It's not really about you, its about the child, and there might be days where really fantastic plans get scrapped entirely. Don't give up trying to have your "fun" day, because there will be times when the special needs child handles excitement and surprises beautifully, but just know that you will likely have to be really flexible and patient.
The rewards that you will receive from this preparation, understanding, advocating, visualizing and acceptance will be abundant. Profound love and bonding with your special needs niece or nephew is sure to happen, and these connections will far surpass any bad day, week or year along your journey with your special needs niece or nephew. Never give up!