Monday, June 17, 2013

Catching Up, Autism, and Understanding: A Little Advice on How to Help and What to Do

***Heads up: The following post is open and honest. I did not hold back, just spoke what was on my mind. Please remember that in no way is there a danger for my son, husband, or myself at this time. There is no need for "heroics" of any type such as anonymously sending "help." Feedback is always welcome as long as it is respectful. Thank you.

Hello all, and happy Monday to you! I know some of my regular readers are probably fainting from shock right now. Whoa! Two posts in two days? I know, right? It's about time i got back in gear with my writing. It's a beautiful hot day here in Gawgia, and both of my guys are napping. That means I can get a lot of cleaning done...or I can write. Guess what I chose? *wink*. Truthfully though, I have the dishes started and I've got a load of laundry out on the line, so I'm not feeling too guilty right now.
    It's been about a month before yesterday since I blogged. I think it was a blend of losing my muse and just being too overwhelmed to write. The autism battle rages on, ya know? There were some days that I was seriously ready to throw in the towel. In fact, there was one day that J woke up ready to fight, and by the time the Hubs got home, I was done. I told him, take him to the emergency room, I don't want to be a mother anymore. And I meant it. I was completely at the end of my rope. We took him to the E/R and told them what was going on. Although we had waited just enough for J to calm down to the point it would be safe to take him, he was still agitated. They ended up giving him a shot to calm him down further, and social workers from Behavioral Health was called in. By the time they got there, it was about two p.m. We had been there since about nine or ten in the morning. I had calmed down some, enough to no longer want to relinquish my son, but I was still simmering. 
     First thing we fired at the poor soul who came to help: He needs to be in a hospital so his meds can be regulated and they can figure out what works.  Pat answer back: The State doesn't do that. Here's what we can do: Yada yada yada. A lot of back and forth, questions asked, blah blah blah. End result? Baby Bear came back home with us with a new prescription to help the rages, a plan was put in motion to get some help (in 9 months to a year after the paperwork is completed, which is currently at a stand still while we wait to hear back from schools and doctors. In other words, red tape), and seven home visits to see what they can do to help. 
  That was about two weeks ago. The home visits are going well. I found out that yes, there are programs for J in this dinky little town --but he isn't eligible for them until he gets accepted for the help described above. Wonderful! And why for the love of all that's merciful, has this been a secret for the two plus years that this area has been aware of his needs??!!?? Aaaarggh!! Seriously, folks, we could have had this ball rolling ages ago, if someone had been nice enough to clue us in. We might could have avoided some of this frustration, ya know? 
  I've always been honest on this blog, especially when it comes to dealing with autism, because it might help someone reading it. I'm going to state here what I told the social workers, and please do not overreact to what I say: Why is there often no help for parents struggling with a child who has a severe case of autism, until the family ends up on the 6 o'clock news because either the parent or the child or both are dead or hurt or something to that effect? It's not all that often that it happens, but folks, it happens. For those about to say it,  NO, the pat answer isn't institutionalization. 
    These are our kids, not common criminals. Think about it for a second: You're in a foreign land and don't really know how to communicate what you need. Something is bothering you, and you have to get someone's attention. The frustration can build until something happens. It's not a pretty sight. 
   Don't worry, J is safe, and so are the Hubs and myself. He's a pretty amazing young man who is really very sweet. Unfortunately, we aren't sure what sets off the rages and this needs to be addressed. He's seeing a new neurologist this week, and we've been told that there is a good chance they will take him as an inpatient to see what can be done. We are hoping and praying that they do.  It will only be for a few days, but this is sorely needed.  If it doesn't go through, his psychiatrist is working on that end for a different hospitalization. Personally, I'm rooting for the neurologist on this one, but either way it needs to be done. And I'm here to tell you, a hospitalization like this shouldn't have to be a last resort, which is what I've been told it is in this state. Doctors, insurance and the state need to stop turning a blind eye to parents who need help.
  Now, those who have kids just diagnosed with autism or recently diagnosed: how does this affect you?  No matter where your child falls on the spectrum, ask questions. What helps are there? Are there programs available? When a child is first diagnosed, the first thing should be Early Intervention. It's like a pre- preschool. They will work with your son or daughter to help them function better in this world. If you'd rather not have them in a public school just yet or want more, ask questions. Read everything you can get your hands on. There are things you can do at home, starting with some of the things they do at school and therapy with the child. There are ideas all over the web for things to do with your child when they are young. 
    Also, ask about the Medicaid Waiver. It will help. There is a waiting list, but get on it ASAP. It cannot hurt to ask. It is better to be over prepared in this case. 
  Get in contact with others who have children or young adults with autism. There are support groups in a lot of cities, so ask your pediatrician or check in the local paper or local parenting newspapers. If none of those are available in your area or you want some one on one information and support, ask. I don't have all the answers obviously, but I've been in the trenches so to speak for nearly twenty years dealing with autism. Feel free to contact me privately if you need someone to talk to. 
   Number one on the list: Set up a support network for yourself. Family, friends, good doctors, websites, etc. Surround yourself with people who will pray for and with you, someone who will babysit for you now and again so you can breathe, someone who will just let you cry and scream and vent. I cannot stress how important a support system is. Trust me on this, I've done the alone thing (along with the Hubs) because it seemed like although some cared, they just didn't know how to help or what to do.  For friends and family of those with a diagnosis of autism, listen up: If you can, offer to give the parents an hour or two by themselves. They need this. If you can't, that's okay. Pray for them continually. Let them know you support them. Prayer helps. Dropping off a meal once in awhile so that's one less thing Mama has to think about is extremely helpful.  Or just plain listening. No judging needed, just being there with a shoulder to cry on can help. 
  While in some ways I chafe at the thought of "it takes a village to raise a child", it comes in pretty handy when you have a special needs child. Support is needed. The world can be a pretty lonely place at times, and when a child with autism is added, it can be even lonelier.

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