I stopped posting on this blog because I realized that I was whining. . . a lot. who wants to read all this constant whining?
Then I realized that no one reads it anyway so I might as well write what I want.
Besides, writing is therapeutic, and I can use all the therapy that I can get.
Today I am going to share the reality of being a special needs parent. It is HARD.
Sure, there are good times. There are times where it is not as hard, although even then things still take much more effort then other parents seem to have to put out.
No one can understand the demands of being a special needs parent, except another special needs parent. Even if your child does not have the same type of needs there are basic concepts that everyone can relate to.
Special Needs Parents Never Get to Stop
From the time your child is up to the time they are asleep a special needs parent does not get down time. I am my daughter's ABA therapist. I do behavioral intervention all the time. When I get off work I put on my therapy voice. I use the voice until my daughter crashes from her medication. I use it for my son's midnight fridge raids, and I use it when my oldest daughter is in her not sleeping at night phase. I use it until I am so tired that I snap and yell at my kids. Then I pull back and use it again. During the day I even find myself using it on my boss.
I wonder when I will actually get to play myself. I wonder if I have lost who I am completely. Maybe all I have left is this shell of an exterior and the inside has completely disappeared.
There is always more to buy
Yes, all children are expensive. However not all children have the extra expenses that special needs children have. In our house this is medication, doctor's co-pays, special food, and rewards. Our therapist recommended our daughter have a tent over her bed so she can have a place to distress. Forty dollars later she had one. Then we need to start a behavioral chart and use constant reinforcement. We took a trip to the dollar store - another forty dollars later she had a book, stickers, and prizes. Then I have to figure out how to replace all the food my son eats that was suppose to go towards replacing meals. Then there is the cost of fixing holes in the walls, buying lights that get broken, and purchasing my chocolate - which is the only vice I have left to deal with the insanity that is my life. Yes, I am a stress eater and it will have to stay because I have given up everything else.
Nothing will ever truly be ok
When things were getting really hard a few months back I pasted the motto "Everything will be ok" all over everything. I saw it on the background of my computer. I had it taped to my wallet and my kindle. I did everything short of tattooing it on the back of my hand.
The truth is everything will not be ok. Everything will be hard. Life will continue to be one step forward and two steps backwards. When you are lucky it will be two steps forwards and one step backwards.
The reality is that my oldest will not suddenly loose his impulsive nature and shed the autism. My oldest daughter will not stop cycling her moods, live firmly in this reality, and love people. My youngest will not stop having panic attacks, will not be constantly overwhelmed, and will not fit into a perfect little mold so I can actually get her the services that she needs. Most importantly I will never get to stop fighting, even when I am to exhausted to think.
No one will ever be able to care for our child(ren) like we can
Yesterday I got yet another call from my youngest's afterschool program to pick her up early. When I got there she was trying to climb the 15 foot fence and moved on to doing bar tricks on the top of the awning. We are on the verge of loosing yet another afterschool program.
I have tried to help them learn how to read her moods. I have tried to explain how to keep her safe. I have tried to explain what I do every single day. The truth is I do not even think that I KNOW what I do, I just do it.
In my daughter's ideal world I would be able to pull her out of school, let her shut down and get out all her stress, and then gradually reintroduce her to the world. I have long since realized that we do not live in the ideal world.