“Until you have a kid with special needs you have no idea of the depth of your strength, tenacity and resourcefulness”Anonymous
From the minute I found out that I was pregnant with my daughter, I had all types of visions of what he or she would look like, how tall they would be and whether they would have brown or blue eyes. My thoughts were innocent and pure, as they should be. I never imagined that things wouldn’t go as planned. But from the very first ultrasound I had, I was keenly aware that something was wrong.
My daughter will be eighteen years old next month, which is miraculous because they didn’t even think she would make it to birth. But what is sometimes a blessing has also, at times, been a curse. And within that statement lies an underlying hurdle to special needs parenting, guilt.
You feel guilty that your child won’t have the same doors and potentials open to them. You feel guilty that you resent them for stealing your unencumbered world. Yet you also feel pity for them, especially when others look at you, or both of you, with that sad look on their face. It is difficult to know that most of the world around you not only feel sorry for you; they are glad that they are not you.
Why People Pull Away
Humans are predictable in some ways and entirely not in others. When my daughter Tayt was born, it was almost as if I had suddenly developed a virus. People stopped coming by to visit. They stopped inviting me to things; they really just stopped having contact with me. I can imagine that I was in a bad place and they didn’t know what to say to make it better.
But at the time; it felt like pure abandonment. There I was at the most challenging time in my life, and I felt as if I had no one. I looked around at everyone else’s life and thought about how easy they had it. And the worst part was that they took for granted what I wish I had and never would, freedom and normalcy.
Special Needs Parenting is a Round the Clock Job
When you have a special needs child, it isn’t just that you are a parent; you are a parent 24/7 for the rest of your life. It is like having a baby that requires all of you and never grows up. The demands are both physically and emotionally punishing. And no one has a clue how you feel. I am sure my friends and family didn’t have any idea what to say.
They were awkward around me, afraid to hurt my feelings or to stare at Tayt too much. They simply thought that it was easier to turn a blind eye, convince themselves that when I was ready and over it, I would reach out. But the thing about having a special needs child is that there is no “getting over it”.
It is a life condition that you never get to escape. My child will never grow up, meet a significant other, be on her own. And I had to come to terms with the fact that the dreams I had for a developing baby were never to be.
It is natural to grieve the loss of a baby. But when you have a special needs child, there is no real “loss” to grieve. You can grieve the loss of what you thought your life and theirs was going to be, but not for long.
Any time that you try to make peace with what you lost, there is one more hurdle that comes along. There is one more specialist’s appointment, one more surgery, one more therapy session, one more something.
The day never stops for a special needs parent. Because they know that at any minute they could get another phone call about what they need to add to their hectic day or one more emotional thing to handle. It never stops, and it never ends.
Being Hardened by the Experienced
It is not uncommon for parents of special needs children to become hardened and bitter by the load that they have to carry. They see everyone around them enjoying family time, watching their children play soccer, football, or get straight A’s.
But for most of us with special needs children, we just pray that we make it through a day without a hiccup. But unfortunately, no one can really understand that unless they have been in that situation. It is also not uncommon to become defensive about your child.
Yes, they have special needs, and they might not act appropriately, but they are still your child. And when they are teased, made fun of, discounted or mistreated, it hurts no less.
Special Needs Parenting and Marriage
When you are dealing with a special needs child, both parents are tired, worn out, hyper-sensitive, and grieving. And some couples bond together while others spend time tearing one another apart. Since friends can become few and far between, sometimes it feels like it is just you two out on an island.
But you don’t have the energy to handle your despair, and you don’t have the energy to handle theirs. Which often results in a rift between two parents struggling to deal with their own grief and sadness. And once that bond is stretched too thin, it feels like it is just one more thing you are losing.
Since parents can handle it very differently; it can start to feel as if you are on opposite ends always fighting over how to handle things and what to do.
Dealing With Isolation and Depression
I went through many years of depression and isolation, without really even noticing it or feeling as if I had time to address it. I was upset with myself for having times that I wished my daughter wasn’t who she was and then other times just anger, but having nowhere to deposit it.
I found myself pulling away from people because the more that I hung out with “normal,” the more it made me feel sad. It was easier to sit and pretend that nothing was going on or to throw all my energy into “fixing” Tayt, as if one day she would magically be just like everyone wanted.
Depression can Sneak up on you
It is hard to feel depressed when you have a special needs child. You don’t get to stop. You can’t just lay in bed and feel sorry for yourself. You have someone who is depending on you to live daily. There is no you. You suddenly become “that parent” who has a special needs child, as if your life didn’t exist before it.
And also, as if the life you had will never return. The isolation is unbearable at times. But by the time you notice that the phone has stopped ringing, the invitations have stopped coming, and no one is stopping by anymore, you are so far gone you don’t even know how to rejoin the life you once had.
Hindsight truly is 50/50
After eighteen years and much introspection, I have a clearer perspective about how I probably could have avoided years of feeling so hopeless and isolated. As hard as it is to take these steps, they are necessary to try to find a new “normal,” reduce the anger and sadness you feel and to find “you” again.
Find a Support Group
Sometimes it can feel like you are the only one going through a hard time. But many special needs parents would like to share their angst, frustrations and perhaps even learn from you and vice versa. You don’t even have to meet them. Sites like Friendship Circle and Bayada are just two online groups where you can read articles about other parents and also find resources regarding new therapies.
Get the Help You Need
When you are a special needs parent, you can begin to feel like no one else can care for your child the way that you can. And you start to take over their care entirely and wholly. What that leaves is very little time for you to be you. It is okay to take the time you need to do the things you used to or things that make you happy.
If you don’t take the time for yourself, you are going to burn out. And when that happens, everything seems that much more grave. Ask for help from friends and family. Or, if finances are slim, you can always turn to government programs to get a couple of hours of care a week. It is critical that you maintain a life outside of being a parent so that you don’t lose yourself and your sense of hope.
Try Not to Push People Away
It can be a really horrible feeling to know that everyone is pitying you or glad that they aren’t you. But try to stop and put yourself in their shoes. Although you are the one who is dealing with a special needs child day in and out, other people don’t know what to do or say. And if you are stressed out, upset and angry, then they don’t know how to handle your outpouring of emotion.
And they are probably fearful that they will say something to hurt your feelings or make things worse. Try to have an honest conversation with the people in your life who are substantial. Tell them how you feel and what you need from them.
A simple “I need you to treat me like you did before I became a special needs parent” is a good start. Just like you are trying to find your way as a special needs parent, the people around you are trying to find their way of being in your world.
Stop trying to hide how you feel. And if things suck, say “they suck!”. I found myself never wanting to admit the truth of how I felt. I hid the turmoil I was going through and tried to make it okay for everyone else. But I felt as if I was living a double life. Nothing was fine, but when people asked, that is what I said I was “fine”.
It is okay to say that you are overwhelmed, sad, or angry. Anyone in your shoes would be. And if that makes people uncomfortable, then that is on them. Is it worse to keep it all inside and pretend that everything is fantastic when it is not? Or, to be straight up with people? Perhaps it might make them a little uncomfortable, but you have to be true to you. Letting your real emotions out and being honest is an incredibly freeing feeling!
Connect With Your Spouse
Your spouse is most likely going through the same emotions as you. Maybe you aren’t expressing them the same or behaving the same. But try to remember that each of you is doing the best that you can. People handle things differently.
So don’t assume that your partner doesn’t care as genuinely as you do or that they aren’t feeling as sad as you. The truth is that we all think we know how we would feel in these types of situations, but until faced with them, we really don’t.
Give your significant other some room to come to terms in their own way. But also don’t make your special needs child the new focus and end-all-be-all. You are still a couple, and your marriage and relationship need attention too. If you don’t take the time to connect, it is shocking how quickly you can grow apart when under so much stress. Take the time to talk openly, share your emotions, and help one another. You are in it together, even if sometimes you feel very, very alone.
Stop Worrying About What Other People Think!
One of the hardest parts of being a special needs parent is the look that strangers, or even people you know, give to you. I used to get so upset when people would gawk at Taytem or stare. But she would look right at them and not care. It was her courage that made me see that it doesn’t matter what other people think of her.
I loved her, not in spite of her being different, but because she is. People aren’t trying to be mean; it is human nature to give it a second look. If they are being mean, turn the other way or point it out! But don’t let it consume you or ruin your day!
You are not perfect. You have been handed a super tricky lot in life. And, as such, it is okay to lose it once in a while. People used to say to me, “Things could be worse,” and I used to reply “Yes, but things could also be a lot better”. It is alright to have a pity party when you need one. We all feel sorry for ourselves once in a while.
Allow yourself to experience all the pity you want. Once you have had enough, pick yourself up, and start anew. If you never allow yourself to be human; it will begin to feel like you are a machine. And, as you will quickly learn, there is no joy in living your life on autopilot!
Don’t Try to “Fix” Your Child
My daughter Tayt has a minimal short-term memory, but socially, she is pretty age-appropriate. The administrators continually tried to put her into classes to teach her their objectives, which was to read at a particular level. I used to tell them that they were trying to take a girl in a wheelchair and ask her to run a marathon.
I always had one objective: for Tayt to enjoy the time she had here. I did go through periods where “fixing” her became the goal. But when I stopped trying to make her what I wanted her to be, or anyone else for that manner, I found peace. I don’t know how long she will be here on earth, but while she is, it doesn’t matter the list of skills she can accumulate. What is important is that she is happy and fulfilled. I don’t need to “fix” her; there is nothing wrong with her. She is perfectly “Tayt”.
Having a special needs child is a challenging role to play. It is not uncommon to feel anger, guilt, frustration, and sadness. And it is also very isolating to be in it alone.
Try to remember you are not alone. Those same people who loved you before you became a special needs parent, still love you. They might not know how to show their support, or might even be fearful of hurting your feelings. Take a step back, take time for yourself, and be honest. And if you are depressed, seek the help you need. Life may have handed you lemons, and you don’t necessarily need to make lemonade. But you do have to take care of yourself for you, and your family’s, sake.