Raising a child with developmental disabilities is often overwhelming for parents and they need all the help they can get. I know. I am one of them.
My son is 3 1/2 years old. He has profound Attention Deficit Hyperactivity Disorder, Childhood Apraxia of Speech and Autism Spectrum Disorder. I have often been guilty of trying to parent in isolation. I don’t like asking for help.
Before having my son, I had already raised three kids so I thought I could handle this on my own. I was so wrong. It actually does a disservice to you and your child if you try to parent without a village. You need the support and so do they. Building your village requires specific goals and everyone’s village will look different. Some families have nearby grandparents that are always available, some don’t. Some parents are on this journey without a spouse or significant other. You may not be able to fill every area of your village, but you can fill most. Follow the guidelines below and you’ll be off to a good start!
When thinking of creating your village think of a target diagram with you as the center. You are the most important part of your village. Self-care is what I am talking about here. Take care of yourself. Get enough rest, exercise, take a day and meet a friend for lunch, read inspirational books, take walks. Find what helps you reset and make that a priority. I attend fitness classes in my community and I love my instructor’s unique approach. Her classes focus on not just exercising our bodies but also our brains. I am so dialed in when I am in one of her classes that I am thinking of nothing else and it’s a wonderful and welcome break! Remember, you can’t pour anything from an empty cup.
The next ring in your village is your home. I mean the people AND the place. Is your home cluttered, disorganized and messy? That can affect your ability to be the best you, which is what your child needs. Your village needs a space that makes you feel at peace. If you have them, are you leaning on your immediate family members in the best way? My husband is my rock in this parenting journey, but I am the one usually doing the legwork in researching the best ways to parent our child. I constantly share what I learn with him. I need his buy-in. I also have older children. While I don’t lean on them in the same way I do my husband, I do need their support. I share what is going on in their little brother’s life. I need them to understand that their brother is developing differently than they did and how to best interact with him.
The next ring in your village is your extended family. This is where grandparents, aunts, uncles, cousins and more come in. They need to know what you need. Ask for help. Invite them to therapy appointments so they understand your child better. Make frequent phone calls and share the struggles and challenges of this special parenting. My husband’s parents live in Vancouver, Canada and we are in Orlando, Florida. We don’t see them often but that doesn’t mean they aren’t part of my village. I call, text and email and try to keep them as up to date as possible on how things are in their grandson’s life. They must understand his special needs and the unique way we need to parent him. When we are lucky enough to get together they know how to interact with him and what to expect. My parents do live nearby but aren’t able to look after my son, however, they still are part of my village. Emotional support is just as important as having a family who can physically offer help.
The next ring in your village is your friends. Being the parent of a child with disabilities may mean your opportunities to visit friends personally may be challenging. Social media makes it possible to have close relationships despite limited opportunities. I have a small group of women I met through a parenting group that lives all over the United States. We were lucky enough to meet up a few months ago and we still keep in touch almost daily through a group chat. We tell each other everything. Sometimes it is about our children and sometimes it’s about shoes. Do your best to lean on family or find sitters to offer you respite so you can visit friends. Even if that means only an hour here and there. It is important.
Your Professional Support System
The next ring in your village is your professional support system. This is your child’s pediatrician, other doctors, teachers, therapists, support groups, online groups, etc. Many parents leave this group out. It is a MUST. You cannot successfully fill your child’s needs without knowing HOW and this is where you are going to learn. You need to educate yourself from the very best. Every single day I listen to a podcast about ADHD or Autism, or read an article, or watch a YouTube video. Your child is constantly growing and changing so their needs are going to constantly change. You have to keep learning. My son is only 3 1/2 but I already have been learning what to expect when he starts school and then becomes a teenager. To be successful, I need to be multiple steps ahead. Being busy isn’t an excuse. Your child NEEDS you to do this. They NEED you to become an EXPERT in their needs. Join online groups moderated by experts, reach out to the professionals in our child’s life and ask them for help and feedback. You MUST make this effort on your own. No one is going to come to you and invite you to do this. Make it a priority.
Volunteer and/or Non-Profit Organizations
The final ring is volunteer and/or non-profit organizations. Before having my son, I had no idea how many volunteer organizations there were in my community, and even in the country, for families with special needs children. And no one told me. I had to uncover this hidden service on my own by doing internet research and asking around. I found that a local university had an Autism center that provided free parent training on a variety of topics and had a smaller division that hosts family events. I’ve taken full advantage of both. I also found another organization started by a local family that offers free respite care monthly in addition to events and activities for special needs kids such as holiday parties and birthday celebrations. You can often locate volunteer and/or nonprofit organizations at the community, state and national levels. Find them! Reach out to them. I have added so much to my village this way!
I hear parents, especially those with children with disabilities, say how hard this can be and I get it. But if you purposefully look for ways to build your village, I promise it’ll be easier. If you need any help, please comment below! If you have other suggestions on ways to add to your village that I didn’t mention, please share!
It takes a village to raise a child. – African Proverb