Friday, September 2, 2011


I have mentioned how hard it has been with Akila lately. Over the past year, her rages have intensified. Over the last month, they have gotten out of control. She wakes up mad, and is mad all day. The meds don't seem to be phasing her. She fights with Michael and I, her siblings, the neighbor kids. She gets mad at the piddliest of things. We are about at the end of our rope. We have seen her raging starting to take a serious toll on the other kids.

A few weeks ago, I called our social worker and asked what our options are. Michael and I are seriously thinking that we might have to look at out of home placement soon-it is that out of control in our house right now. Since Akila is not on a waiver yet, our options are limited- hence the hoop jumping I mentioned in this post.

Our social worker did call this Monday and say that she was talking with our behavior specialist and they were wondering if we would want priority placement on a bed at a crisis home. I said yes. Didn't know this was an option. She then called on Tuesday and said there would be an opening at the end of this week or beginning of next week and wanted to know if we wanted it. I said yes, with some trepidation in my voice.

When I received this call, I was on the way to pick Akila up from a teen dancer's house where she had spent the day being babysat. I had to pull over on the side of the road to cry for a few minutes and gather myself. I also sent out a couple of texts to some friends- in particular to Dorothy and Julie. Dorothy asked if we should get together that evening. I said I couldn't til after bedtime as I can't really leave Akila home alone long at all with Michael and the kids she is so out of control- and is really bad if I'm gone. So we decided to meet at the hospital where Julie has been living for 45 days now with her sweet son Elijah who has undergone a bone marrow transplant.

Akila was suppose to go out with Angie bowling that evening, but when we got home and Angie was waiting, Akila was not in a good mood (I did not tell her about the crisis home looming of course). I had to change clothes as I was going to a memorial service for a wonderful doctor I have worked with at Children's Hospital who died last month. I had it all planned, that Akila would be out with Angie while I went to the memorial service. Akila had other plans. I just left. Eventually, Angie was able to get Akila to leave to just go and get dinner, but I don't think they were gone too long.

When I returned home, Akila was standing on the sidewalk in front of our home, with her hands on her hips, a chip on her shoulder and a scowl on her face. It went down hill from there. Not too long after that, over some piddley thing, she was trying to attack Hezekiah, and we ended up having to restrain her as she was completely out of control. It basically turned into an "epic" rage. Two hours long.

We videotaped a tiny part of it as the behavior specialist asked us to do this awhile ago and I keep forgetting to. By the time I finally got her to bed at 10:45, I texted Dorothy and Julie and asked if it was too late to come, they thankfully said no. I flew over to the hospital and had a great time hanging out with moms who get it. Even better, I brought the video of the rage to get their input. These are moms who are both parenting challenging kids, really challenging kids. They both watched it, and said you can't live like this. That was really affirming. Thanks ladies, I needed that. As it is in my nature as a mom to wonder if I am doing the right thing. We hung out til 1:30 am. In a hospital. Now you may know why I call myself psycho mom. Lots of other reasons. ;)

Wednesday, I received the call that Akila could go to the crisis home on Thursday. Apparently, this is all much faster than is normal. Usually, you are on the waiting list for a long time, several weeks at least. So then, I had less than 24 hours to get her to the Dr. for a physical, get med orders from the psychiatrist, get some laundry done so I could get her packed, etc. Thankfully, I work so closely with my docs at Children's and the special needs clinic, they were able to make the physical happen. Akila and I spent the last evening, Wednesday, at the hospital watching Elijah so Julie could go home and take some of her kids (she has 11!) to their school open house. This was perfect, as Akila loves going to the hospital and guaranteed if we were at home, she would be raging.

Spent Thursday, getting her to the physical, then she hung out with the PCA while Michael and I went to the crisis home for a 2+ hour intake. We came home, told her we were taking her somewhere to stay overnight and once in the van and driving explained where it was that she was going. We have been telling her for months that if she continues to be violent, that she will not be able to live at home. That she cannot keep on hurting her siblings and parents, and still live here. We have had family meetings, where we all individually declare our love for her, and our desire to keep our family together, but tell her that she has to stop hurting everyone. So, we explain what this house is like, what the staff are like, etc.

She says a few things like she doesn't want to go, and this sucks. We also tell her that they will bring her to school. She says that she wants to ride the bus. We tell her that in a week or two, she will ride a bus and I tell her how cool this since she has always wanted to ride a different bus. She then gets really excited. We get to the house, which is less than 10 minutes from our house. She gets out of the van, walks up to the front door, goes in when they open the door.

They introduce her to the other 3 kids that stay there currently, and some of the staff. We go downstairs to where her room is. She meets the program director and manager. She is giving them nice smiles, her shy smile. We bring her in her room. She is not fearful acting at all, or scared. We tell her we are going to leave, give her a hug and a kiss, tell her we lover her and will miss her, and leave.

Any of my other 3 kids would have been terrified and melting down. But not the FASD brain. It was like an adventure all of a sudden. She called last night, and was telling me about some of the things she had done, that she had watched the Disney channel, swung on the swing set, etc. Didn't ask to come home, didn't cry, or any of that stuff. This doesn't make me sad by any means, as I know it is classic FASD. I also know at some point, it will all wear off and she will hit the point where she will want to come home.

When we left, we had to bolt home, pick up the other kids, split up and go to two different open houses for school. I went to the downtown school where Akila and Zeke will go and Michael went with Imani and Hezekiah to the Crystal school. I really needed to connect with Akila's teachers to let them know what's up. I had talked with her 1:1 aide on Wednesday and updated her. I also ran into the Associate Principal in the hallway and let her know. She stopped and thought for a moment and said, "so maybe I shouldn't have her with a shared aide, I should have her with a 1:1 aide." Evidently, she had been planning on having the aide shared with another student, which I know they did last year and it worked, but was not ideal. I said I think that would be a good idea to do 1:1 as I anticipate it being a rough year, with it being the first year of switching classes and all that stuff. .She said OK, she would take care of it. She also said she remembers me saying a few years ago that kids with FASD get more challenging as they get older. Wow, people actually do listen to me!!! Phew, glad I ran into her.

Then I ran over to the Crystal school as I really wanted to meet the middle kids teachers also since they are going to a new school and learn more about it. I also ran into a friend of Akila's. Doesn't that sound funny. Akila has a friend. This is a sweet girl, I will call her Ellie, who use to got to school with Akila and until 3rd grade. This is back when Akila was easier to play with and she did kind of have a few friends. Then Ellie went to the Crystal school in 4th grade and we kind of lost touch. But we connected a little bit this last year and Ellie came over once or twice in the past 6 months or so and they had Akila over for a sleep over.

Here is why I love Ellie and her family. First of all, Ellie is awesome. One of those kids that any parent would want to be friends with their kid. Sweet, smart, funny, polite. All around awesome. And she is really patient and understanding with Akila, which is extremely rare with 12 year olds. Second, Ellie's mom had a brother with FASD, and totally understands Akila and the struggles our family is facing. She knows how to deal with Akila, and she knows how to help her daughter be patient with Akila. How cool and rare is that? I know, God is good.

So I ran into Ellie and her mom and dad last night and shared with them the news. My mind was in a fog last night. We dropped Akila off at the crisis home at 4:15, open houses started at 5:00. I was talking with the mom about the therapy and stuff that we will be setting up and doing in the near future, and she shared with me how she remembers being very angry as a kid and going into her room and hitting her pillow. She said the therapy was helpful for her and some of her family. She said it made no difference for her brother, which is something I referred to in my post that I linked to up above. She said she also remembers going to bed at night scared, and wondering if he would kill her.

This was also so affirming to hear, as part of why we are doing this with Akila, a big part, is for the other 3 children. God has been faithful and bringing messages of hope and affirmation when we need them throughout the week. He has placed the right people in the right places at the right time. I know for sure that we did the right thing, but that doesn't make it easier. It still feels really yucky. It stills leaves a void and a hallow feeling.

She can stay there for a max of 45 days. She will still go to school. One thing that I am hopeful for, is that they will be looking at her meds and helping us to evaluate if she is on the right meds. We can visit her anytime, but won't til next week to give her time to get settled. She called last night and I just got off the phone with her. She once again this morning seems happy and like she is at camp or on an adventure. This is a much needed respite. We don't know what will happen next. We are focusing on one day at a time. We will meet with the staff every two weeks. They will email me updates every other day. I can call them anytime.

We do appreciate all of your support and prayers. This has been a roller coaster of a week. Of a month. Of a summer. Of a year. Of 12 years. But God has been good and we are feeling some relief.


GB's Mom said...

So glad you are getting a break! Respite and hospitals were all that kept us sane during MK's teen years. {{{Hugs}}}

Blessed said...

Wow, God is so good. How awesome that everything fell into place so quickly--it must have been the right time for it. And to have those affirmations when you are feeling so low--but Ellie sounds like the cherry on top. I am so sorry your family is struggling so much now, and poor Akila. . . Most of all I pray for you, Barb, since the mom always takes the brunt of everything. I hope this 45 days helps restore you in spirit.

DynamicDuo said...

we didn't find out our girls had FASD until they were 15, we knew they had RAD tho'. We survived the constant rages and physical violence only because we knew deep within that there was more to the story... their story. The RAD/FASD combo is the hardest, all logical thinking and response must be thrown out the window. I hope you can refresh and rest, will be praying for you and yours.

dorothy said...

Great - horible- overwhelming - relieving...all rolled into a single day.
love you all to pieces

Kristin Dieng said...

BIG HUG Barb. We sure all get our challenges, don't we?

Please feel to bring Hezekiah over for play time at our home (or a sleep-over) if you're in the SW suburbs. Noah would always LOVE to see him. Both of the boys really. We can always feed them pizza and they can play their games. And then hopefully that'll give you a bit of breathing space.

Kari said...

You are in my prayers. Please let me know how I can help beyond that, OK?
♥ to you all,

AKBrady said...

The feeling of waking up in my bed without worrying about my son was the most liberating, ever. Now we are re-entering a new crisis and are exactly where you were three days ago. It is crucial that we remember we are caring for not only our other children, but ourselves. We must honor that. Bless you. Bless your whole family

Donut Diva said...

I know how hard this must be for you as you want what is best for your other children and your mental state, but you also still want to mother her as much as you can. Although I can't compare what I go through with what you go through in any way I understand. This weekend my mom has Ivy and I am able to breathe and think clearly for the first time in months. I didn't even call to check on her. I know she is ok, and she never has issues when all the attention is on her. But what parent doesn't even check on their kid when they are away? So I play the guilt trip with myself but know I need a break just as much as she does.
I wish you peace in your heart and your home and will pray for your family during this time.

Megan said...

Oh Barb - I'm so sorry and so thankful that this option was available and so quickly. Praying for a time of healing for your other kids at home, and for refreshing for you and Michael. Praying for Akila, too, for wisdom from her medical team and the staff at the crisis home. Know that we will continue to pray!