This is a ridiculously tough post to type, so please forgive any type-os. I doubt I’ll be editing this one.
I’ve got enough of my mom in me to want to avoid “airing dirty laundry,” as she would put it. But we’ve reached rock bottom here and I should at least explain why I haven’t been around to post. Because I just put Jonah to bed and don’t have enough energy to tell the whole tale, I’ll present a Reader’s Digest version of our tumultuous time on the ocean…
This past weekend Jonah had a very rough time behaviorally. A VERY ROUGH TIME. On Saturday he threw a toy from the backseat and hit Andy in the head while he was driving. Andy’s response was way over the top, without a doubt inappropriately so, and I had to take Jonah away from him. After going back and forth with Andy over the phone – I wanted him to take a break and leave the house for a week or so; at first he refused – Andy decided to check himself in to a hospital. This was Monday, I guess. I am so frazzled. I forget what happened which day. I don’t know what order things happened in, or how we got here, or how this is became my life.
Jonah continues to be in “random attack mode” and since Monday I have gone into “taking care of business” mode. I have taken many steps to mitigate the behavior and ensure our financial, emotional and safe survival, including applying for home behavioral support services, getting Jonah on a low dose of clonodine, arranging for a special harness seat on the bus, making a myriad of appointments and phone calls to schools, doctors, agencies, and coordinators to arrange for services so I can still go to work and care for Jonah as well…
…things I took for granted are now huge considerations. How to go to the grocery store. How to go to my therapy appointments. How to sleep. Eat. Breathe. Remain sane.
I’ll go into award-show mode now. I’ve won nothing but nonetheless am on the podium and have just been called to give credit to those who so deserve it: I couldn’t have gotten through this weekend without my cousins D and B, who dropped everything to stand by me & get me through this; they’ve helped with Jonah, incurred injury after injury from his attacks, and pulled me up from the waters that threatened to drown me. My mom has offered her home, also suffered injury at the hands of my out-of-control son, and come to my aid to help even when I am stark raving bitchy. My dear friend M has stuck by me through so much – rearranged his whole schedule to ensure my safety and ability to cope. My dad has been very supportive. My boss has been fantastic. My friends are caring and there if I need them. My cousin Brian is ready to jump to help me with whatever I need. Even the people I supervise at work. I am grateful. I am grateful. I am so incredibly grateful.
This is a trial by fire if there ever was one. Andy and I had already decided to separate, but I hadn’t said anything just yet; now I may as well tell that too and get it all the major shit over with in one post.
Sorry if all the dirty laundry is stinking to high heaven. I hope the meds and behavior supports and whatnot serve to bring my sweet boy back. I hope Andy is getting the care he needs and is okay. I hope I can keep it together.
If you’re the praying sort, I could use some of that.
We’re staying afloat…
The Never Normal 
i wondered what had been happening, and so sorry that you are going through such a hard time. i am the praying sort, and you are on the top of my prayer list of late. i’m sorry that is all i can offer, prayers and cyber hugs from across the miles. *gentle hugs*
LikeLike
I am glad your family is supporting you. There are several crisis teams in the area. Your Medicaid Service Coordinator should be able to tell you how to reach them when needed. There are holds you can use for restraint but you need to learn how to use them safely and be strong enough to use them. There s no reason why you should not get the behavioral team but in this current fiscal climate of cutbacks not everything happens that should. Your son obviously needs a one on one skilled aid at home, in school and on the bus especially. This is something that is justified but not automatically received. In the world of autism there is no such thing as dirty laundry. There are only unmet needs the service delivery system including agencies pretend do not exist.
Clonidine works for some and not for others. Trying clonidine with everything else you are trying is the only way to find out.
Children with autism can pick up on emotions and days when you are not your best. Moms are forced to choose between mates and the child all the time. Most Moms pick the child. Adults are responsible for themselves but children are not. Your son is commenting on your situation through his behavior which is the only way he knows
You are making the necessary choices.
LikeLike
Always here for you to listen, vent, cry and try to make you laugh. Whatever you need. Love you my friend.
LikeLike
So glad you have so many friends and family there to provide the support you most certainly need. Words can only do so much, another pair of hands is invaluable. I wish you all happier times very soon.
LikeLike
I’ll always be there for you ~ M
LikeLike
Autism Myth: People with autism are violent for no reason at all at random times that can not be predicted.
Reality: If you have trouble communicating with words to people whose behavior makes no sense, then you act to communicate and have a meltdown when your message is not heard and understood.
Example: Having a good time listening to video and being expected to leave to go grocery shopping in a place that makes no sense and is confusing, scary,boring or too much information all at once.
Understanding the message:
1. Look at what happened before
2. Look at the consequences of the behavior such as stopping the trip to the grocery store
3. Identify actions actions such as a look, statements or body posture that indicate start of action
4. Stop and think about alternatives that are acceptable, non threatening, meet a need of the person with autism
5. Write what you learn down to keep track of what happened, what works, what does not work, and improve ability to predict to act to avoid negative acts and achieve positive acts.
6. Keep talking in an interactive pattern with child to show you understand and demonstrate that words and speech are way to communicate so you are understood. You should always reward the use of speech instead of negative actions and to show you need words to understand the problem
7. Recognize that a consistent pattern of negative behavior in one setting such as a class or a bus ride indicates that the person involved is sending a strong message that there is a problem. You need to act to resolve the problem by observing, talking with participants, discussing solutions and removing the person if all the talking fails to make necessary changes.
8. Learn to accept that while you are the parent, the person with autism is also a person with likes and dislikes as well as dealing with autism. Recognize that you are both in a situation that is frustrating, enraging, uncomfortable, unsafe and boring or happy, calm, peaceful, rewarding, safe and interesting
9. Recognize that your child is learning and developing so change is a constant. You can direct that change in a positive direction if you keep listening, gathering information and looking for better alternatives.
10. Recognize that there are positives in every situation you can build on for positive change. Sometimes the only positive can be the lack of a significant negative event such as death and taxes or an extreme shortage of chocolate ice cream. So you can deal with it.
LikeLike
Hi,
I could tell from your recent posts that you were on a downward spiral. I considered writing but felt that might be out of line. Sounds like you are doing everything right – – and isn’t it amazing how family and friends will rise to the occasion when they know they are needed. Support, action and resolution seem to have gotten you to that good “Mary” place.
My heart is with you, as are those of many others I’m sure.
LikeLike