Parenting is difficult; it has its highs and lows. There is no one way to parent and when you have a special needs child requiring complex care it’s challenging and often frustrating. Though it is rewarding and there isn’t anything I would change, that doesn’t change the fact that it’s not easy.
There are days when I am a super parent juggling millions things at a time like a pro, ecstatic about the new milestones achieved, and then there are days when I am hiding in pantry crying my eyes out, feeling depressed and discouraged.
Some days I feel I can take on anything thrown in my way and other days I feel worthless. I need a community of people to help me feel better and to support me. Community plays essential part to overcome anxiety and help tackle the daily stress and struggles of modern life. Here are my tips on how to build a special needs community of your own:
Some diagnosis are not very common and there aren’t local support groups for them, but with Facebook and Instagram I am able to connect with so many families going through the same emotions with valuable advice to share. These groups are places where you can vent freely without fear of getting judged, and also hear about motivating stories about others that inspire hope. These open discussions, forums, and groups can bring about realistic, logical solutions – exactly the type of support that families need!
Some groups offer scholarship programs for therapy and some plans yearly retreats where you and your child can make friends and have some fun. Some groups also have regional subgroups where you can connect.
This group gives me a fresh breath of air. Every once in a while I want few hours in a week where I am not talking about my child’s diagnosis or listening to another child’s. I want to go for a run, or have coffee and bagel with meaningless chat about what we saw on TV. It allows me to remind myself I am more than just a special needs mom. There are many meetups that you get to go and allow yourself to feel like every other mom once in a while. Watching a movie once a month with these mom friends can be a stress buster.
Sometimes we exclude them from the lists of our support system, but I have found myself time and again going back to them for advice about how to help Kyra better. Sometimes I vent to them about a difficult day and sometimes we celebrate together about the new milestone that was achieved.
Sometimes keeping faith and being surrounded with people who have similar faith like you can help keep the spirits high. Getting involved in some of the religious festivities or taking part in cultural activities can give the mind needed break from the routine activity.
Sometimes it’s difficult for extended family members to understand each medical jargon and they do not know how to help, or what to say, I believe that they do want to help. Allow yourself to be open and let your family in; Let them know what’s acceptable in terms of help and how they can help. It is okay to rely on people for support and know that there is no guilt in it.
Having diversity in the community you form is also important, it keeps you from having same conversations over and over again. Hope you already have the community to support you, and if not hope you try to make one soon and as they say “The best thing to hold on to in Life is each other.” Let’s help and encourage each other.