When you have a child with special needs you find that you categorize people in your life based on their level of understanding. I have found that in my world, I have 5 such groups.
- The Clueless
The clueless are the people who are completely ignorant to everything you deal with on a daily basis. This isn’t always their fault, sometimes people are put in this category because we choose not to open up our world to them. The ones we do open up to, but still ignore our child’s challenges really frustrate me. These are the people who tend to put road blocks and obstacles in our way to trip us up. There are so many people who fall into this category for me. I have had family, friends, doctors and many teachers in this group. It would do our world a lot of good if this group could be eradicated by education.
- The Tolerant
I think we sometimes mistake the word tolerant as a positive word. It can be, to an extent, I guess, but if you really think about it, who in their life wants to simply be tolerated? How would you feel every day if you dealt with people who simply tolerated your existence? It’s not necessarily hurtful or harmful, but it’s not an enjoyable experience to be in the presence of ‘the tolerant’. To me the tolerant are the people who acknowledge my son’s illness, but disregard it or don’t make an attempt to understand it. A large number of people in this group for us have been teachers. Yes, it is helpful that some of them will read his IEP and follow the guidelines set, but if they don’t take the time to learn about my child’s diagnosis and how it affects his learning, they won’t be able to teach him.
- The Accepting
Acceptance is another one of those words that can sound good, but doesn’t make the impression on me that it used to. There are many people in this world that are accepting of mental illness. They are aware that there is a problem in the way it is viewed. There are even people out there that are fighting to change the stigma that is placed on people with any adversity. As great as that may be, and as helpful as that will be for us in the future, I feel that a lot of people simply consider us a cause to participate in. Don’t get me wrong, being accepting isn’t a bad thing. If I didn’t have a child living with bipolar, I would probably be in this group. It is wonderful to be passionate and fight for human rights, whatever they may be, but those who don’t live it, will never see it the way we do.
- The Understanding
The people in my life that fall into the understanding category, have been my cheerleaders. These are the people who have taken this journey with me and my son. These are the friends who have listened to me cry and were there to let me lean on them. These are the family members who took the extra step to learn my son’s needs so they could spend one on one time with him to give me some respite. These are the few doctors who spent extra time with us in an effort to find out what was wrong and how it could be treated. These are the people who, when I was at my wit’s end, would encourage me and tell me that I was doing a great job, even if I didn’t feel it. These are the people who help me find my strength.
- They ‘Get It’
The people who ‘Get It’ are in a very special group for me. In them, I have found kindred spirits. The people in this category are other parents and caregivers of kids with special needs. I have discovered them in the parents of my son’s friends and people in the N.A.M.I support group that my husband and I attend. I went for years thinking ‘Why doesn’t anyone get it?’. It made for a very lonely life. About a year ago we met another family who changed that and through them we met other families. It has altered our world. Yes, when you have a child with special needs it can place certain restrictions on your activities, but once you meet other families that ‘Get It’, you will find it is much easier to be social. In turn, that can help guide your child in social activities that they may find overwhelming. The fact that this category of people now exist in our lives has set me free.
I try not to pigeon-hole people the way my son has been over the years. Many of us fit into all of these categories, depending on the subject matter. However, on the topic of mental illness, I hope and pray that I can help people move up the ladder from Clueless to Understanding, simply because I think it would make the world a better place in general. Although it is nice to find people who are already in the ‘Get It’ category, I never pray for them to end up there. I wouldn’t wish the heartache and pain my son feels on any child or their parents.
For those parents who don’t have anyone that gets it, if you need to speak, there are many of us out here to listen. Whether it be online or in a support group, you can find others that know what you are living through. I know that we all create a type of safe zone for ourselves, but I found that if you take the time to step outside of it….just a little, you might find a whole different world for you and your child.
*** N.A.M.I is the National Alliance for Mental Illness. To locate a support group in your area, go to http://www.nami.org/.