While this title can seem a bit funny or odd when you first read it, the idea makes sense when you think about it. What happens when you don’t know enough about a subject to effectively ask the necessary questions to get the answers that you need? If you’ve never heard of a particular type of therapy, how are you supposed to know enough to ask for it? If you don’t know that a particular piece of adaptive technology exists, how are you supposed to be able to determine if it would help your child? If no one told you that there is government funding to help you deal with the extra costs that come with many disabilities, how will you be able to apply for it?
Raising a child with a disability can be a daunting experience. It can be frustrating when it feels as if information is given to you only in bits and pieces. One of the most gut-wrenching questions that can be posed to a parent is “How did you not know about this?!?”. It implies that the parent did not do enough to obtain the information. If you are reading this, and you have felt this way, please know… you didn’t do anything wrong. Please take a moment and read that again. You have done nothing wrong. You are doing your best. There is no way for any human to know everything about everything!
Knowing and accepting that human beings are not capable of knowing everything is an important fact to understand, but the reality is that it won’t help you to find the help you may need. Below is a list of ways you can learn more about opportunities that could help either yourself or your child.
- The internet – This may seem like the easiest of all the options, and yet there are times when each of us becomes so overwhelmed that we can’t get ourselves to actually do it. When we search, we come up with so many results that it can be hard to sift through everything. However, the internet can have information that could help you. Instead of sitting down for a long marathon of research, try to build 5 minutes of internet search time into each day. Take those 5 minutes to make yourself as knowledgeable as possible about your child’s disability. You may not immediately find information about specialists, or therapies, or services, but you will become more knowledgeable about the terminology that applies to your child’s condition. As you become more knowledgeable, you can use the terminology in your searches. Once you have a good understanding of your child’s disability, you can try moving onto Google Scholar where you can search for peer-reviewed research pertaining to your child’s disability. If you filter your search you can check for information that is newer rather than old information. One thing of note, it is best to stick to peer-reviewed research. Anyone can write a research paper, and they could advise anything they wanted. A peer-reviewed research paper will give you information that has scientific evidence for its claim.
- Be Open – Admitting you don’t know something is the best way to get answers, so be wide open! Tell your child’s doctor/therapist/service provider that you want to know what else you could be doing for them. Tell your friends that you would like their help in finding sources of information. Post on social media and ask friends to connect you with other parents they may know who have been in a similar position. You’re not asking others to place the burden on them, you’re asking your community to keep an eye out for other ways to help your child. They say it takes a village to raise a child, and when it come to a child with a disability, this old adage becomes even more true.
- Join Social Media Support Groups – This has been a huge help for me. I was never able to find a social media support group for my child’s diagnosis because her diagnosis was too rare, so no support groups existed. However, I was able to join multiple support groups that pertained to many of the different aspects of her disability. In full transparency, sometimes the advice doesn’t pertain to her and sometimes the advice is completely wrong, so you need to remember to listen to all advice with a critical ear to determine if it would be helpful to your particular situation. However, on other occasions, the advice helped immensely! After one particularly difficult surgery, the doctor left us with our post-op instructions and we went on our way. Within the first hour, we realized that we had a ton of other questions that we hadn’t known would pop up! I have never been so grateful for the social media support group that I had joined just weeks prior, in anticipation of the surgery. I posted one of my questions, and within moments the answers started to flow in. This myriad of complete strangers not only answered all my questions, but they also gave advice for issues that I hadn’t even known were likely to come up! The doctor did his best to give us the information that he thought we would need, but he had never lived the experience. These people had lived the experience and they had come up with ways to make the experience more tolerable. They had also come up with home remedies to fix smaller issues that popped up to avoid having to go back to the hospital. I currently belong to 7 social media groups that pertain to my daughter. I don’t spend time on them often, but when I see a question come across my feed that is about an issue we have experienced, I make sure to respond so I can pay the kindness forward.
- Therapeutic or Connection-Based Support Groups – These groups are different from social media support groups in that they are designed for you to be able to discuss, in real-time, the difficulties you face while trying to help your child. Whether they are in-person or on a video platform like zoom, these types of support groups are great for learning about what you may not know! These groups also have the benefit of helping you to feel less alone. Let’s face it, having a child with a disability can be lonely at times. When you have the opportunity to listen to the stories of others, you can hear about how they have worked through problems that may be similar to your own. You can find tips and tricks and different ways of doing things that could make life easier. You can also get feedback on therapies, specialists, and programs that could be helpful to you. The hardest part is finding the groups, as many of them tend to be specific to a diagnosis. One support group is run by The Arc of Cumberland & Perry Counties. It meets in Camp Hill from 6-8pm on the last Tuesday of every month, except November and December. For more information click here.
- DIY Support Group – Sometimes if you want something done you need to do it yourself! As you move forward on your parenting journey you will meet other caregivers. You’ll meet them in the waiting rooms of the therapists and specialists. You’ll meet them at the schools your child attends. You’ll meet them at programs you find. And the one thing that each of you will have in common, besides being the parent or caregiver to a child with a disability, is a lack of people in your life who understand not only the demands and difficulties of your life, but also the intense joys that others may take for granted. When you come across these people, consider being bold enough to ask if they would like to help create an informal support group for local parents to share in the burdens and the triumphs of everyday life. I was invited to join one of these DIY support groups when my daughter was 4 years old, and it made all the difference for myself, my daughter, and my entire family. If I hadn’t had access to this group I would not have known about many therapies, activities and resources and I will be forever grateful for all that group has given to me throughout the last 14 years.
- Parent to Parent – If a support group sounds too intimidating to you, never fear! There are other resources out there for you. Parent to Parent of Pennsylvania is a group that works to support parents of children with disabilities by matching them up with a volunteer parent who had similar experiences. These volunteers take the time to share their stories with you, and work to help support you in your parenting journey. For more information, click here.
- Local Service Providers – Here in South Central PA, we have a wealth of service providers who offer different services for families that deal with disabilities. If you don’t live in South Central PA, it is likely that there is another branch of many of these providers that works specifically in your area. Take the time to look through the resources listed below but remember that they aren’t going anywhere and there is no rush to access all of them right away. Set up a goal for yourself. Maybe you contact one resource per month? Maybe it’s one resource every two months? Maybe you don’t contact any of them just yet, and instead you take some time occasionally to look through their websites and learn some things you didn’t already know. Maybe you’re so overwhelmed right now that all of this seems like too much, and that is ok too. There may come a time when it is a bit less overwhelming, and then you may be able to move forward with learning. You can choose whichever path works best for you.
Resources:
The American Academy of Pediatrics
The Autism Services, Education, Resources, and Training Collaborative (ASERT)
CPARC-Cumberland Perry Arc of PA
Connect Information Services for Early Intervention
Department of Human Services – Children
HUNE- Hispanos Unidos Para Nino’s Excepcionales
Intellectual Developmental Disabilities County Contact Information for Pennsylvania
Office of Developmental Programs
Parent Education and Advocacy Leadership (PEAL) Center
Community Stakeholder Groups:
Early Intervention Connections-LICC
State Interagency Coordinating Council
In the coming months the Community Links Blog will showcase different support services, therapies, and activities that you may not have heard of before. Make sure to check back often to read about new opportunities and ideas! Let’s get educated together!
