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Friday, November 14, 2014

The Terrible Day and the "What Next?" Feeling

Yesterday was a terrible day with Janey, terrible from start to finish.

Janey slept very badly night before last.  She was up at around 2 for good.  By bus time in the morning, we were exhausted.  The bus aide told Tony before Janey got on the bus that she has been crying a lot the day before.  Tony said he hoped today would be better.  We all hoped that.

I slept much of the day.  At around 1 pm, I got a phone call from the school, from one of the program heads and Janey's teacher.  They said Janey's behavior was at a level they had never seen before---frantic crying and screaming.  They took her to the nurse, but as is almost always the case with Janey, she was physically healthy.  They wondered if anything had been different at home.  It hadn't, except that we too had certainly noticed Janey had entered one of her darker periods, after a long stretch of happy behavior.  I felt like I had little to offer them in the way of ideas.

Getting Janey off the bus, I heard the driver say to her "Maybe NOW you'll stop crying!"  I asked the drive and aide if she had been crying a lot, but they didn't answer---I don't know if they didn't hear me or were just too burnt out to answer.  Janey came in and was happy for about 20 minutes.  Then all hell broke loose.

Janey asked me for a video.  I put it on.  She evidently didn't like it.  She lunged at me.  She grabbed my hands and started bending back the fingers as hard as she could---a behavior that has showed up in the last few days for whatever reason.  I pulled away my hand, and she grabbed my hair and pulled it as hard as she could.  I pulled away and she lunged again, and tried to bite me.  All the while, she was screaming a scream so loud and intense her back was arching.  I could feel that her heart was pounding very fast, and she was breathing extremely hard.

I got away from her, feeling for the first time true fear that she was going to badly hurt me.  I called Tony, and as we talked, she again lunged at me.  I was in tears.  Tony said he would get home as quickly as he could.

I gave Janey a dose of her evening medicine early, as her psychiatrist has said we could do in an emergency.  As always, she took it willingly.  She knows it calms her down, and I think she wanted to calm down.  After about 20 minutes of screaming, she was calm enough to eat, and Tony got home a bit after that.

The evening featured off and on incidents, but the worst was over for the time being.  Tony and I were drained.  Janey was not.  She stayed up until 10.  Thankfully, she slept until 4---the 6 hour stretch was the best we've had in a while.

The morning from 4 on was tough but somewhat bearable, with the two of us here.  When Tony put Janey on the bus, both the driver and aide talked to him.  Unfortunately, there is a big language barrier, and with the loud bus engine, Tony was unsure what they were saying, but it involved yesterday being another bad day on the morning bus for her.  However, they let her on, and we exhaled and went to try to start today.

The feeling I keep feeling is "What now?"   I feel like we have crossed some point---we are ready for more help.  But there isn't more help.  We did the steps we could.  I wrote to her school asking for a meeting next week, to talk about how we are all going to handle Janey, and we will have that meeting.  Tony is going to call Janey's psychiatrist today to see how soon we can see him.  But except for those two steps, we have no idea what else to do.  There is no number to call, no magical number you can call and say "Okay.  I'm ready.  I'm in need of help.  Help me."

There is support.  There is a lot of support, and without that, I would be sunk.  I thank each and every one of you who reads this blog, and your support and kindness and compassion keep me going.  I am grateful so very much to Janey's school---I know she is cared for and loved there, and I know they want the best for her.  I am thankful for my family and friends.

But help, help in caring for Janey, help that will give us some respite, help that will make a long-term change in Janey's life, help that I could have called yesterday when I felt physically scared, the kind of help that would be available so easily if what Janey had was a physical ailment---that does not exist.

I thought a lot yesterday about when Freddy had a terrible asthma attack.  We knew what to do.  We took him to the emergency room.  Within seconds, he was being helped, by a large team of professionals.  He got top of the line care, which very well might have saved his life.  He was admitted to the hospital.  He got wonderful followup care.

Yesterday, in the horribly dark moments when Janey was attacking me, I had no idea what to do.  If I had taken her to the emergency room, from everything I've ever heard and read, they would have had no idea what to do either.  There is no team of professionals rushing in to help with mental health issues.

This is a long entry, a raw one.  Maybe an angry one.  I am starting to feel anger in a way I usually don't.  What happens when you are ready for help?   Is there any help?

Janey will get over this very rough patch.  But it will come back again.  It will keep coming back.  And I guess we will keep doing what we are doing, getting by any way we can.  What else can we do?  I think the answer is----nothing else.


Yuji said...

I feel for you, Suzanne. It is such a helpless feeling to think that nothing more can be done when things are so bad. Please continue to reach out to the staff at Janey's school and other professionals and press them for help. Perhaps there are organizations in your community that can provide respite services. Maybe you can find some support through other families in a similar situation.

Hoping that there's some relief for you soon.

Roxy Simmons said...

Wish I could give you a huge hug right now - what an awful day for you guys.

I am wondering... and I hope this doesn't offend... but have you considered some kind of anxiety medication for her? My daughter (6yrs old) went through a similar violent phase and I could see that the reason was mostly because of overwhelming anxiety. I had to do something and so we went to a child psychologist who recommended a low dose of SSRI. My daughter is now on Zoloft and I have to say that it has helped hugely with her anxiety. She still gets into tantrums/rages, but they are short lived.

I felt that there was so much 'noise' from my daughter's anxiety, that I couldn't get through to her. The Zoloft quietened it all down.

I know these meds for kids are controversial. It was not an easy choice for me, but having suffered from anxiety myself, I saw the pain my daughter was in. Anyway, I just wanted to put it out there. Might be at least an idea to make an appointment with your child psych.

Much love to you and Janey, and your family. Just know that I've been there too and I know how you feel xxxxx

Unknown said...

Wish it could be said it will get easier at time and there is help. We are still learning with Age everyday. Just in the past years found a way to calm her aggression.what helped Age was get some of her extra energy out. We got her enrolled in martial arts. We eliminated a lot of sugars and all known food allergies. We took walks more. Age wouldn't just lunge after us she would go after people too. She had all this energy and anger and just had to get rid of it. It was so scary. As you can understand you don't know what to do and you can't just run or hide either. The academy she goes to for martial arts had no idea if they can handle her. She's was violent. Strong. Aggressive. Nonverbal. Bit. Scratched. Spit. Had more energy then the energiEr bunny. They took the job on and worked with her. We paid for 1:1 training to get the basics of punching and kicking down. They have become autism trained themselves ha ha. She will still have moments of just aggression and energy building up and go after one of the professors or teachers, they just block her and redirect her to the bags, encouraging her to work. It feels great when she's angry and strong, I bring her there and it's like I don't have to worry for anybody's life or hers. Try looking into karate or maybe getting a punching bag, redirecting her to take the anger out on that. Anything is possible. Age can also do special Olympics now. She was horrible getting her to do it at first. She just attacked everybody and screamed. Still to this day many years later the same team who has grew with her is afraid of her. Though she follows commands better and is more apart of the team. I mean it was bad. We would show up and people would cringe. She would not follow directions. Spun constantly. Ran off any chance she got? Went thru people's bags and tried to eat in edible objects. Bite people(helmet was important with face mask). Scratch then. Climbed everything in sight. Yelled. Screamed. Hit people. Pinch them. Break random stuff for no reason. It was bad. Special Olympics is for kids higher functioning though were lucky and they accepted Age. And now she's much better. Still will yell or scream. Still grab or push or hit people. Still will run off. Still climbs. Though isn't lunging after people. Isn't biting everybody. Isn't full of anger. I'm hoping once we fix her seizures she will even be better. Who knows. Point of this long post. Don't give up just yet. And hope everything gets better.

emvelez said...

Eileen Velez: When I worked at DCF, we or the parent would be advised to call 911 and get an ambulance out for an emergency evaluation if a child was that out of control for that long. You do have a magic number it is the BEST Team: 1-800-981-HELP
and it is 911. You cannot manage a child in that condition, even trained professionals have a difficult time. I worked with many kids like that over the years. They needed a much higher intensive level of services that a family home cannot provide under even the best of circumstances. You do not even have any help like a PCA or a VNA. It's terrible that you have to do this alone. It is very dangerous too. It is not being noble or anything else to ask for help. It is for her and your safety and in Janey's best interests. Please get DDS involved again for case mgt services ASAP.

Angel The Alien said...

If I lived near you I would help... even if all I could do was be in the room with you to help you weather the storm. It must feel awful for Janey to not be able to communicate what she's going through, and awful for you guys to not know how to help her.

Freeyoke said...

My daughter has been getting more violent by hitting, kicking, spitting and biting teachers, kids, our family members and strangers. My wife hit a low point when my daughter hit another kid at the Burger King playground. That family got up and moved to another table in the restaurant. My wife apologized but didn't tell them our daughter had autism so they had no idea what was going on. Now, my wife wants the behavior issue addressed in the IEP. I wasn't surprised as my daughter is in a class of all autistic boys and is the only girl. I think she has picked up some aggression from them as they seem less verbal than my daughter (not that she can speak spontaneously that much).

Sabrina Steyling said...

I am SO SORRY to hear about this, and although I wish I could offer some type of advice all I can offer is prayers. Prayers that you are able to figure out what needs to be put in place for Janey now and in the future, and peace to know that the decisions you make are the right ones for all of you.