These are things this Special Needs Family wants all others to read and understand. We are not Superheros we are just a regular normal family dealing with sometimes extraordinary circumstances. Our children are the superheros....yours and mine alike.
1. Just like all parents, we want the best for our child, no matter what. That is why we work so hard and strive to give all that we can. We aren't trying to change something that can't be changed or in denial we just want to make sure our child can reach his fullest potential and life his life the happiest it can be. We really are just a different form of every other regular parent or human out there.
2. This is a huge one. WE ARE TIRED!! Being any parent is tiring some days, being a special needs parent is tiring most days. There are many sleepless nights, in our case the sleepless nights outweigh the well rested nights 4 to 1. Being a special needs parent and being exhausted isn't a different ball game it's a whole different league. Even if we get a good nights rest there is still a level of tiredness knowing or not knowing what the day is going to throw our way. Fatigue is something we learn to live with. We don't come with any extra energy or patience than normal people we just learn how to manage what we do have. We realize we can't give 100% of ourselves 100% of the time. We know that because of the emotional, physical and financial exhaustion we deal with on a daily basis we need to take me time to avoid burning out. We are so eternally grateful to the friends and family that understand our fatigue and don't complain if we just can't attend a social function because frankly a nap is needed. Sometimes just an hour to ourselves to have a hot bath in peace or a coffee with a friend is all we need to feel like ourselves again. We can't be our best if we don't take a little time for us. We often come back refreshed and ready for whatever is going to be thrown at us next. It is a good mental break for us to be known for the fun, energetic, kooky and sometimes crazy people WE are and not just being known for being a special needs parent.
3. We should be given a medical degree among all of the other jobs we do on a daily basis. More doctors, specialist, therapist and clinic appointments than you can count. Specialist appts are not just a few times a year but some monthly and some weekly. Therapies may be daily. I feel like some days when we are talking to specialists and doctors I may have done more research in my 14 years of being a special needs parent then they have done in their entire career. Making ourselves aware of medical terminology, how to read xrays, CT scans, blood work and MRI's is just part of the job. Once we learn how to read them and what it all could mean often brings us a feeling of accomplishment because then we don't have to wait weeks or months for answers. I sometimes feel I could work in the Neurology Dept of our Children's hospitals and do it with my eyes closed. I am sure this is not the case but it definitely feels that way some days.
On top of our medical degree we also deserve a diploma in Admin Assistant. The amount of paperwork, phone calls, scheduling and filing we do is insane. It could be a fulltime job some days. We could fill out 10 pages of paperwork just to be told an hour later our child doesn't fit the criteria and given a whole new set of paperwork to fill out.Phone calls are hard and we could spend an hour on the phone just preparing for a half day specialist appt to make sure everything is in place for when we get there. Only to find out something has been forgotten. Trying to navigate the specialists, resources and funding for our children is no easy task. We have "resumes" we give new professionals working with our children that include full medical history, dates of all surgeries, lists of all medications, names of all professionals working with our children, past and present.
We are nurses, caregivers, PSW, DSW, advocates, janitors, laundry machines, teachers, therapists, early childhood educators, researchers, bodybuilders (my arms are like rocks from lifting or transitioning our 14yr old), and most of all loving parents.
3. Please reach out to our children. We love it when people reach out or acknowledge our special children. Yes they are special but we also know they deserve to be loved and talked to/about just like other children. If it is not a good day to interact with our children we will let you know. Even our child who is nonverbal loves to be talked to and acknowledged. Just because they can't talk back doesn't mean they don't feel your voice and words. One of the happiest days I can remember was when a little boy asked if our son could go to the park and play with him. No he can't but from the mouths of babes our child sitting in his wheelchair drooling and not talking was just a normal child that looked like a fun kid to play with. That warms our hearts.
4. Some days we are jealous. Some days seeing other children do things our child never will makes our hearts hurt. It can feel like we will never feel those moments that other families feel. We will never see our son walk, play music, do sports, or even say I love you Mom and Dad. Sometimes we mourn for the things our child will never do or things that take so much longer for our children to learn to do. Sometimes we are jealous of even other special needs children, ones with more mainstream disorders, ones that have so much more research being focused on them or disorders that are more understood and accepted by the public. It is not easy to admit that but it is true. It does not take away from our pride in our son's accomplishments it just means sometimes we wish it could be different, not for us but for him. This point leads into my next point.
5. Sometimes we are lonely. Not lonely as in we have nobody to talk to or have a coffee with but lonely as in nobody will understand so why bother. We can't go to Mom groups and listen for hours while other Mom's brag about what their child is doing or learning. We don't fit in if we talk about our child's new medication, feeding routine or a new theraphy they are starting. Yes I have been looked at like I have a third eye. We often feel isolated when in a group of other parents. We don't have the same experiences or feelings about "little Johnny" going potty as they do, do we talk about how our 14 year old son is still diapered because he can't go to the bathroom by himself. Some days it is easier to just sit and not say anything then to feel like we are aliens. Divorce rate is extremely high in special needs families because sometimes we even feel isolated from our spouse. We are not always on the same page as our significant other, we are humans and all feel things differently at different times. We still have dreams and aspirations of our own as individuals, sometimes they are hard to talk about because we feel they may never happen and sometimes we dream out loud hoping someone else hears us.
6. We have very real fears and they are never far from our mind. We have to ask ourselves the tough questions no parent should ever have to. What if I wasn't here anymore, who would care for my child, can I trust them to do it how I would want it done? What if my child wasn't here anymore, could I continue on a new life because there is no way it would be the same life as it has consumed so much of me for all of this time? We fear when they do sleep well that maybe something is wrong and we check on them often. We fear forgetting something, forgetting a medication, an appt we have waited months for, we fear others not understanding when we have a moody day. We fear mean or unkind words from others. We fear being isolated or forgotten about. Most of all we fear we are not doing enough, we can always do more right? What if that one thing we didn't do has a huge impact. We fear we will be financially strapped for our lives. We fear our other children don't get enough of our attention or they will be upset knowing any money we could have put away for their educations had to be used for special equipment, treatment or child care costs for our special needs child. My biggest fear is my so called normal children will resent me or their special needs brother because he got so much of my time patience and energy.
7. We feel your words much more than you know. Please choose your words wisely. We have heightened emotions from lack of sleep, fatigue, racing minds and good or bad we feel more than the average person. Some days I feel like an emotional mess. Someone can say something so touching it brings me to tears in the middle of a farmers market and 20 minutes later someone can say something that makes me so angry I am sure I could reinact a scene from a horror movie and not think twice about it. Your words like, retard, retarded, short bus are disrespectful, hurtful and mean. It is making fun of someone for being different in a mean manner not a teasing manner. A pregnant woman telling her friends she doesn't care what her child is boy or girl as long as it's healthy is sort of a slap in the face for us who didn't give birth to healthy babies. You might as well say well I don't care what I have as long as it isn't like their child. Right or wrong some days we do feel this way. I often said with my last child I didn't care what I was having as long as he was healthy and I hated saying that because I knew he would be loved and cared for even if he wasn't. I came up with a new saying that was ' we don't know what we are having all we know is it's a child" A very true statement we weren't having a baby monkey we were having a child. Healthy or not he would still be our child. Your kind words, how we make you feel or what our friendship means to you means more to us than we could ever put into words. A simple gesture or text message letting us know is all it takes to brighten our day. We try to show our friends how much they mean to us as often as possible. Choosing to send us an inspirational message or just a hey I hope you have a great day could mean the difference between a bad day turning good or a good day turning great.
8. We don't want you to fear us. My child may be different than what you are used to, he may look or act different from others but don't fear us. Ask questions we will answer. We love talking about our children, their struggles, their accomplishments and their needs. Don't be afraid to ask about his disabilities or his abilities. I will always want to share our son's life story with others. I hope he inspires others as he has me. Please if my child is having a meltdown or a bad day offer your assistance but don't be offended if there is nothing you can do to help. If my son has a seizure in your presence please don't be fearful, calmness and confidence helps much more. Understand I am confident in my abilities to deal with the situation and if not I am a great director and can tell others what I need to get through this. Seizures can be scary but if you remain calm chances are you will feel our son's strength as he battles through it.
9. We are human and sometimes we need help. Sometimes I get cranky, moody or just want to run away. Sometimes I need help and don't know who or what to ask for. Sometimes I feel like I should be locked up for my emotional changes and sometimes I feel like Wonder Woman. Some days we feel like we can't continue on like this 1 more day but most days we wouldn't change it for the world. I am a woman, a lover and a fighter. I would walk to the end of the earth to help a friend in need. I try to teach all of my children empathy not sympathy and to always help one an other. I can't remember the last time I told someone " No I can't help you" it's not in my nature. We have been challenged and pushed beyond our limits, we have fallen over the edge and come back for another round. We wait for those curve balls to be thrown our way and hit it out of the park. Not every challenge is met with the same intensity however we do strive for the same outcome in the end. Sometimes our children need attention from others because we have spent all of our time with our special needs child. It takes a village to raise a child the saying goes. Well my special needs child could use a village of his own and another village to make sure our other children are well rounded.
10. WE APPRECIATE YOU!!! Each and every one of you reading this, we appreciate you, we love you and we are always here for you. We may not be perfect and we may have to say "I'm Sorry a time or 2" but if you read nothing more from this blog post know we appreciate you and who you are. We love you and love your kind words, warm hugs and your time to read this.
Nothing in life is ever easy and everything worth winning is worth fighting for. This is our fight and we will win!!
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