As special needs parents, we often find ourselves at the receiving end of well-intentioned advice from well-meaning friends, family and acquaintances. And unfortunately this advice can be unasked for, unwanted,and bring up strong emotions. For many of us, each day is a struggle to survive. So, rather than criticism, what we really need is compassion and maybe even a friendly ear.
I remember being admonished by a mom friend many years ago, because I did not dust my light fixtures often enough. The brought up some very strong emotions. Apparently she was under the impression that I actually had the spare time to complete this very unnecessary activity. You see, I was spending each day making sure my kids had everything they needed, and I guess that meant that I had to neglect my light fixtures. So lock me away, and send my light fixtures to a loving home, right?
I laugh at this moment now, but back then, it really hurt. She tended to present herself as a mom who had it all together all the time. She often had opinions on my life, my parental decisions, and of course my children. If I tried to vent, she would come back with all of the reasons that I was being unreasonable and greatly over reacting. And since her children were perfect, she must have all of the answers to help me with mine, and she loved to offer that advice whether I asked for it or not.
It is not surprising that we are no longer friends, but I did learn a very valuable lesson from this friendship. The only one that gets to judge my life – is me. I get to decide what a success is for my child, I get to decide how I parent my child, and I get to decide how I feel.
Many of us feel guilty for having any emotions other than elation and joy when we think of being a parent, but this simply isn’t reality. So why is it that we have to hide the ugly in our lives? Why does our Facebook page need to show that our lives are well put together? And why, when we get real with people on our Facebook page, is it met with judging comments and unwanted advice?
I recently met a mom who had just received a special needs diagnosis for her child. She was feeling very guilty for grieving over this diagnosis. But why? Isn’t that a normal response? Would we tell this mom not to grieve if her child had received a diagnosis of cancer? Probably not. I am not comparing a special needs diagnosis to cancer, because I know they don’t compare. What I am saying, is that the mom in either situation should get to decide how she feels about it without judgement.
Very often a special needs diagnosis is met with many different emotions, and they are all normal. Parents should not have to feel guilty for having them, and the people in their circle should support them. If we take the time to fully understand why a parent may be feeling a certain way instead of putting our own judgments on them, we may find ourselves being the kind of support that they truly need.
Many parents suspect that there is something going on with their child, and very often, the diagnosis is much less than what they feared. Some parents blame their parenting skills for their child’s special needs, and it can be a huge relief to find out that this is not true. Finally being able label what is happening can help parents stop feeling guilty over not being able to provide the help they know their child needs. It is at this point parents can begin to understand their child’s disability, and learn to cope. Parents may no longer feel alone, as the diagnosis may open up a world of support, and if school has been a struggle, the new diagnosis may mean the child will also get the help they need in school.
The important thing to remember, is that even though the parents are feeling relieved, it does not mean that they don’t need support or that they are okay. All special needs parents need support.
2. Grief/ Loss
It is perfectly normal to feel loss when your child is first diagnosed. Every parent has a vision of what their child’s life will be like when they grow up, so it is only natural to feel loss when those dreams come to a halt. Parents should be allowed time to grieve this without having to feel guilty. The facts are, their lives are about to change due to the diagnosis, and they should be allowed to grieve over that as well. This may mean many trips to the doctor or to therapy. It may mean many adjustments to family life and even work life. These things all deserve to be grieved.
The best thing to do for a family experiencing this loss, is to listen. Most parents in this situation aren’t looking for answers, they are looking for a supportive ear.
Usually by the time a parent is able to get a diagnosis, they have fought long and hard to get it. Parents know their children better than anyone, so they know when there is something not right with their child. Finally getting that diagnosis can be so validating.
Years ago, I remember sitting in an office having an eye doctor tell me that my son was very smart He just needed vision therapy to help his eyes translate symbols more effectively. I wanted to march into the numerous doctor’s offices I had sat in over the years screaming this news! IA doctor had told me that my son would never amount to much, and now I had the proof that this was not true. I felt so very validated in that moment, and I am certain there are other moms and dads out there that know exactly what this feels like.
Please remember that these parents aren’t angry with the previous doctors and reports. Frustrated, maybe. They are actually thrilled that someone finally believes what they have known to be true all along. And, they are happy that they can actually put a name to the problem.
For some of us, the new diagnosis brings up feeling of guilt. Maybe they too have that diagnosis and feel like it is their fault. Or, maybe they feel guilty for being hard on their child for their annoying behaviors only to find out they could not help themselves. This is normal! Parents are not perfect, and feeling guilt is part of that.
The best way to help these parents is to help them realize that they are doing the best that they can. They are imperfect parents just like the rest of us, and that is perfectly okay.
5. Isolation/ Embarrassment
Many special needs parents feel isolated. While countless parents go out with other couples or go on family outings with other families on a regular basis, this can be challenging for special needs families. Very often these families may opt to stay at home because of the worry over their child’s medical or behavioral needs. Let’s face it. Who wants to venture out to the noisy park when it will cause an embarrassing meltdown in front of judging eyes? And who wants to leave their child with someone who is not experienced enough to safely watch their child?
Many special needs parents find themselves working odd hours to make up for lost time due to medical and therapy appointments. And, when they can find some free time to spend with friends, it can very easily be interrupted by an unexpected crisis moment.
What these parents desperately need is understanding and patience. Yes, it can be frustrating when the evening with the girls is suddenly cancelled because of yet another crisis. However, if we think about it from the special needs parent’s point-of-view, we will easily see just how disappointed and embarrassed she is too. This is when we need to be even more supportive. Make sure this mom knows that she is not being judged if her child has a meltdown, and maybe even suggest a girls night in once in a while.
Being a parent is a tough business, but being a special needs parent can be even harder. There will be many days that parents dealing with special needs will feel completely overwhelmed. Like I mean throw in the towel, call social services to come take my child, I cannot do this anymore, overwhelmed. This is very, very normal! No one should look at this parent and rebuke them for feeling this way.
People living on the outside of a special needs home do not see the long hours, the multitudes of laundry, the hours of crisis counseling, the numbers of medications, the hours of doctor visits and therapy appointments, and the lack of self care that most special needs families go through each and every day. If we could actually peer into a special needs mom’s daily life, we would be truly amazed. What these parents need is a shoulder, and an offer of help.
Being a special needs parent means that there will be many days where your child will bring you so much joy your heart is ready to burst. This makes the overwhelmed days worth it. We all need to celebrate these moments with our special needs parent friends. It might seem like what is being celebrated is really pretty small. Celebrate anyway.
I was so proud when my 8 year old learned to tie his shoes. He had worked on this skill for so long. When my daughter finally signed “more” without prompting, I did a happy dance. Its small moments like these that can be so exhilarating for special needs parents, and we need to be there cheering with them.
People often tell me that I am my child’s best advocate. And of course I know this is true, but it can be very frustrating to be an advocate. When I have done more research and know more about my child’s diagnosis than the professionals that are supposed to be working with my child, it can be extremely frustrating. Special needs parents learn to dig and search and dive into any information they can to help their child Often times they become the expert. So, when these parents seek help, it can be frustrating to find that there really isn’t anything out there that has not already been tried.
These parents don’t need advice. Please know that these parents are way beyond the usual and customary treatments and therapies. What they need is a listening ear, a strong shoulder, and a supportive circle.
10. New Normal
With every new diagnosis comes a new normal. A year ago, I could not have imagined that I would be where I am today. There is not an outing that I don’t pack special food. I also have to figure out how long we will be gone so I know how much of that special food to take along. I don’t even think about it anymore, because it is part of my new normal.
Each special needs family is amazing at adapting to their child’s needs and finding their new normal. It is not because we are somehow special people with an extra special dose of patience or parenting skill. We just do what all parents do. Parent our children to the best of our abilities, and we simply do whatever that means in our homes. It becomes as normal as putting socks on before shoes.
If you find yourself feeling guilty for feeling a certain way, stop right there. Remember, it is okay to have any emotions you want, and please do not let anyone tell you differently. And, if you find yourself in the circle with a special needs parent, get to know them, support them, and know that when you do support them, it means the world to them.