Parenting Pointers: Preparing for the Future for Your Special Needs Child

ANNETTE HINES is the author of Butterflies and Second Chances: A Mom’s Memoir of Love and Loss and a founding partner of the Special Needs Law Group of Massachusetts. She brings personal experience to her practice as the mother of two daughters, one of whom passed away from mitochondrial disease in 2013. This deep, personal understanding of special needs fuels her passion for qualityspecial needs planning and advocacy and drives her dedication to the practice. Recognized as a Distinguished Citizen by ARC Massachusetts and cited for public service by both the Massachusetts State Senate and House of Representatives, Hines works tirelessly on behalf of people with disabilities.

I had a chance to do a great interview with her.

What's something parents should do early on to help provide a secure future for a special needs child?

The first thing parents should do early on to provide a secure future for a special needs child and for their entire family is to start pulling together their team. First, they should look to their trusted professionals and advisors such as attorneys and financial professionals tohelp guide them. Then they need to pull together their clinical and technical team to advise them on specific special need s issues relevant to their child so they can learn to be the expert in their child. Next, they need to pull from their community such as the girl scouts and boy scouts, after school and library programs, church and synagogues and so much more. Last, but so important, look to their families to develop strong team members, remembering that sometimes it’s difficult for grandparents to accept special needs in the same way that parents do and they may need more time and flexibility to do things in their own way.

By following these guidelines you’ll assure yourself of having a strong safety net and of not feeling so alone – a feeling all too common for parents of young special needs children. And if disaster strikes your family, you’ll be ready.

Where are good places to go to stay up to date on the latest medical or educational research and legal issues regarding special needs children?

Parent groups are always the best places to go for resources and sometimes disability specific organizations can be very helpful as well. For example, www.thearc.org, is a national organization that has great information about their state chapters that serve people with intellectual and developmental disabilities. Since my daughter passed away from mitochondrial disease, I spent lots of time working with www.mitoaction.org. Their website was very educational.

But because I was very lonely, I sought out many in-person meetings and conferences as a way to connect with other families that were going through similar experiences like mine. It can be very difficult to get out for an evening or a Saturday morning, never mind a whole day or several days! But if they have child care, or stipends or scholarships, and if you can make it happen, it can really be worth your time to go to an event that both families and professionals attend together. You learn the latest information and you are able to get those human connections you need to keep from going crazy!

Why is it important to have a plan for transition from child to teen to young adult?

Educational services are an entitlement in our country. That means that if our children need certain services to access their education (and we can prove it!) then our state needs to provide those services no matter what the cost. However, that is not true of adult services once our children age out of the educational system and become legal adults. It is true that as their parents we no longer have a legal duty to support them, house them, feed them, or physically care for the them. But in many instances, if we let them become a ward of the state, there are just no good options anymore and there is nowhere for them to go. That is at the very basic needs level of the pyramid.

But who wants that for their children? We want our children to thrive! All our children! Special needs or otherwise. And that requires very careful planning and very diligent advocacy because personal and governmental resources are scarce. We have to start thinking about this early and build on it from year to year as our children grow. Just as you don’t suddenly say in your typical child’s senior year, “hey, let’s start planning for college”, you also don’t start planning for transition to adulthood for special needs child when they are in their last year of school.

How can families make sure that other children in the family aren't overlooked?

This is truly a tough question to answer and it will be different for every family. But it lies in the fact that every family member is an individual and is important to the family and the whole family cannot serve one person. Each kid needs to have their thing that makes them special. Maybe its ballet or kung fu or soccer. But the thing that makes them special can’t be that they are great to their special needs brother. They have to have their own identity. And mom and dad need to have their own stuff that interests them too. You still have to take vacations, even if modified. You still need to do holidays, even if modified. You have to live – it’s really important to show your kids that your family has traditions and customs just like every other family does.