The subject for today is deep truths of special needs parenting.

Parenting in general is something that is different for every child and parent.  The way I parent my kids may not necessarily be the approach that works for another child.  So parenting in itself is already a complex subject and there are so many different unique aspects to it.  When you add another layer of special needs children it just makes parenting more unique.  Parenting is already a challenge but this new layer just makes it a little more challenging.  Parenting is already a change in your life but this new layer just has more changes.

Here are just a few things of which many I think any parent would experience but I guess the special needs child just intensifies it more:

1. Guilt – In the beginning I struggled with this more so than now.  Feeling guilty for what they were having to go through, feeling guilty that I had a part in bringing them into this world.  When I do anything  fun or relaxing for myself I feel guilty too because I think all my “free” time should be dedicated to them.
2. Hurt – Seeing our kids in pain is hard for any parent but I guess the extent of how much I have to see this is what makes it different.  I am not only seeing them hurt for normal things like falling and scraping their knees or getting a cold or getting in a fight with their friends.  Since birth I have watched them get poked with needles, I have seen them go through surgeries, I have seen them in fear of noises they can’t adapt to, I have seen them struggle with transitions or I have seen them get picked on for being in special needs classes which leads me to the next one…
3. Mean – Wow kids can be mean at all ages.  I have heard it all walking through the school.  I think a little over a year ago is when I really realized it though since it was directed at my child.  I saw how mean kids could be and I watched it happen but Melodie fortunately didn’t pick up that they were being mean and laughing and just laughed with them.  I think it hurt me more than her because I realized I could not be there at all times to protect her from people in this world.
4. Fear – the fear of the unknown is the worst kind of fear.  Not knowing what the developmental delays will impact in their lives for the future.  I know it is silly but I start thinking about their future and whether they will be able to survive on their own, if they will be able to have a job, if they will get married or if they will have children.  I know it is silly for me to think of all this right now but nobody knows the brain.  Nobody knows if these delays they have will eventually cancel out as they get older or if they will always be delayed, etc.
5. Learning – Just as you figure out one thing either that one things changes or you have to figure out the next thing.  It is a continuous trial and error of what technique works best and sometimes it could be a daily change or even a minute change.
6. IEPs – You will have to sit in sometimes 3 hour meetings to discuss the best plan for your child in school.  It takes lots of planning to make sure your child is getting the most each year and luckily I have an amazing school that has always had my back.
7. Plans – You may plan something for months and when it boils down to it that event may end up being a disaster.  You just never know what the reaction will be because as mentioned above transitions are difficult.  This can be disappointing when you anticipate what you think it will be like and how excited you think they will get.
8. Insurance – You will spend many hours talking to insurance companies because they deem the procedure or test that was done on your child as experimental or something is not covered or the claim was submitted wrong or this or that. Yes I like to experiment with my child getting poked in the veins, really it’s a blast!
9. Doctors – You will meet lots of doctors.  You will most likely have to switch doctors at least a couple of times because I have learned that some doctors have no bedside manners and should probably not be pediatric doctors.  Also be prepared because many times you will know more about your child than the doctors; you will become a doctor haha
10. Worry – I know all parents experience this but I guess I worry about those things and more.  When I am not with them for example I can’t help but to worry are they going to have a seizure, will somebody notice and help them, will they get bullied at school and it goes unnoticed, will they have an accident at school, etc.
11. Exhaustion – You will be exhausted and get the feeling that you just can’t do it anymore.  You will feel overwhelmed and you will want to give up on everything.

At the end of the day though all of that just goes through my mind in the background and I carry on with my life.  I find the strength within to move on and think about the good things.  I don’t let it stop me from cherishing every moment I have with them.  You have to accept it and make the best of it because it’s just different.  It is your unique life and being unique is what makes all of us interesting…

“Today you are You, that is truer than true. There is no one alive who is Youer than You.” ― Dr. Seuss