Monday, November 17, 2014

Verbal or Non Verbal which is worse?

Do you follow Autism Daddy's blog? The link is here He has got quite a following, and I believe rightly so. I have loved reading his posts because they reflect the true struggle of being a special needs parent.

Until lately.

Now there is an US versus THEM thing going on. Or maybe Verbal versus Non Verbal.

When I worked as an ABA therapist my kid's parents would always say - if only he could talk. Things would be so much better if he could talk.

Except my kids could talk, and it did not make anything better.

My son started talking early and never shut up.

My youngest stopped talking, but she picked up the ability to mimic people early. She looked like she could carry on a conversation. That was enough for everyone else.

Now she can talk quite well. Except when she doesn't. Except when she just decides to stop. Except when she talks in Fruit Language which consists of the words "Pineapple" and occasionally "Apple."

My daughter being able to talk does not stop her from being overwhelmed at school. It does not stop her from trying to run in front of cars. It does not stop her from biting or hitting. It does not stop the Autism at all!!!!

 Sure she can speak very well. Yet, she cannot tell me why school is freaking her out. She can not tell me about the bullies. She cannot put into words emotions that she does not understand.

Because she is so verbal she is expected to be typical. She is not.

As a person with Asperger's I understand that the words coming out of my mouth do not explain the world that is going on inside my head.

This discussion would probably not piss me off so much, except I am tired. I am alone. I have to fight so much harder to get services for my daughter, even though she is not functioning in this world.

There is no room in the neurotypical world for individuals with Asperger's. Now parents of non verbal children are trying to push us out of the Autistic World. As an individual with Aspergers this upsets me. As a parent. . . well I pretty much guarantee you that I have had just as much sleep as you (which is probably none) and I have just as many worries as you do (which are uncountable).

When I see you and your non verbal child in the grocery store I will do everything in my power to be supportive. Are you going to be like all the other parents and give me "the look" because my verbal nine year old is riding in the cart with her tablet to survive the trip?

Friday, November 14, 2014

The Reality of Being a Special Needs Parent

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.

Thursday, November 13, 2014

Where We Are

The thing with having three special needs children is that you always fill like you are running around in circles trying to get things better. You move very fast, but you never accomplish anything.

We had an intake appointment with the Regional Center for L this week. For those of you who do not live in CA the Regional Center is a grant funded center that has services specifically for individuals with developmental disabilities. I was told not to bother with my children since they are so high functioning. However, with no where else to turn, and L's behaviors not improving, I decided to bother. It seemed to me that the worse that could happen is that I would be turned down.

I am actually very excited. L has a full evaluation scheduled. I have attempted to get this done before, and was resigned to having to pay the Educational Psychology students to do one next semester. Now she gets to have one by a professional who specializes in Autism. Even if she gets turned down for services the evaluation will be a helpful tool for us going forward.

Any tools are welcome.

I am really worried about how my children are impacting my work. My children come first. That is easy. But what part comes first? Having money to buy them food or picking them up from afterschool when L is trying to climb over the fences?

J is going through puberty. It is a very trying experience. The worst part is that I know that we are at the beginning. There are some humorous experiences. He is trying to learn about girls via girl books in the library. He is also hungry all of the time. J eats a lot. He eats a lot for a growing 13 year old boy. When he is not very hungry he still has three heaping plates full of food. When he is starving he eats EVERYTHING in our house. He ate a couple pounds of spinach in one meal. He goes through ten pounds of fruit in about three days. We use a twenty pound bag of rice ever week, sometimes every two weeks. (Yes, I know rice is not Paleo - but I have to do something!).

I have found that J has to eat before anything else. When he wakes up he has to go eat breakfast first thing. Then he eats a second breakfast when we get to my work. He usually eats before school as well. He eats when he gets back to my work, then nibbles while I make dinner, then he eats three full plates of food. Of course before bed he also has another meal. The scary thing is, this is how hungry he is WITH his stimulate ADHD medication suppressing his appetite. I am not sure how he would make it through school.

Then there is S. S is so predictable in her moodiness that it is so much easier to account for. She hates everyone at school, sleeps a lot, does art anytime she is not suppose to and does not do it when she has free time, and lives in a world that has no basis in reality. Every few months she has a week or two where she trashes my house in the morning. She currently has five A's and one B because I promised her 50 dollars to go to the art store if she had straight A's. I honestly never thought it would happen. She badgers her teachers every day about her grades. In a way I feel sorry, in another way I am proud that she is able to do so. Yet her social and emotional skills are closer to that of a six year old, even though her body screams teenager.

I am tired. As soon as I get rid of one set of bruises/bite marks I get another set. Nothing sounds better to me then a few days without my children, a week would be amazing. Can you imagine 24 hours of never having to leave your bed? I cannot imagine actually being able to relax, even when I sleep I have to be on full alert lately.

The really good part is that work has been very understanding. I still work hard, and I am about finished with a major project in the mist of my crazy home life. It also means that coming to work to relax has not happened for the last couple of weeks. Despite it all there is nothing else to do but continue on. I have to keep hoping that things will get better. In small ways I think that it has. However, I do not thing the struggle will ever end. In many ways I think that is the hardest part.

Friday, October 10, 2014

World Mental Health Day - Schizophrenia

Did you know that October 10th is World Mental Health Day? Every year a theme is chosen for World Mental Health Day. The theme for 2014 is Living with Schizophrenia.

Schizophrenia may not have a huge following such as Autism Spectrum Disorder - so I am thrilled that they decided to give this disorder the attention that it deserves.

As I have blogged about previously S was officially re-diagnosed as schizoaffective disorder - bipolar type(SA-B). Ultimatly the research suggests that individuals with SA-B are more similar to individuals with schizophrenia. Some research suggests that individuals with SA-B in truth have both schizophrenia and bipolar disorder. Other research suggests that SA-B is a subset of schizophrenia that also contains a mood component. For more information check out my blog post about SA-B.

What is it like to live with SA-B? The only perspective I have is that of a mother. Sometimes I just look at my daughter and wonder what thoughts are going around and around in her head. These are the times that she is the least connected to 'reality'. Then there are the times where she is mostly connected but she is twisting aspects of the world. During these times she just appears to be paranoid and fixated. These are when we have discussions about her having to do a homework assignment that never existed because otherwise something horrible will happen to her at school.

Other times she seems firmly grounded in the same world that I occupy (or a similar one, since my world has an ASD slant to it). The older she gets the further away these times come. I do not think it has anything to do with her condition getting worse. I do think it has to do with me being able to recognize it more as she is getting older and less sheltered at home.

What does the future hold in store for my daughter? Honestly I have no idea. Without outreach and programs to help her I am very apprehensive about the future. Although, I do know that my daughter's potential is unlimited. She can go down as the greats such as Picasso and van Gough. Yet neither of their lives were all that stable either.

Either way our family celebrated World Mental Health Day in style. My darling son decided the way to go was a metal rod through his door. Good thing tonight is our sparing class. . .

Hope you have a wonderful day spreading your own sort of awareness.