Monday, September 2, 2013

One Step at a Time

Oh...this face...

I can't begin to tell you how much I love this face...and how frustrated I can get with this face...

Faith's first meeting with her new speech therapist went well. I didn't really get any ideas or information from her, as she was redoing the evaluation that Idaho had flubbed up...but I did get something I haven't had in a while- reassurance.

I had been told in Idaho that we couldn't start any therapies until we had a diagnosis, and our new speech therapist Ms. Carrie said that is absolutely NOT true.

She said that, after hearing our concerns, watching Faith, and completing her evaluation that she can definitely see a diagnosis that goes in one of two directions- no surprise- the directions were either hearing loss or Autism Spectrum Disorder.

She said that Faith exhibits mannerisms that are common in kids with ASD (sitting with her back facing the people she is socializing with, not wanting to play with other kids, not wanting physical contact unless she instigates it, etc.) however, she has seen in the past kids using these behaviors as an adaptation for help to feel some control in their world when they have hearing we're still where we were a few weeks ago...

But- back to the reassurance- the hope.

She said that the beginning therapies that she would use for a child that has ASD and hearing loss are the same. She has things that she can do with Faith to help her RIGHT NOW as opposed to waiting until we can find a diagnosis to get more targeted therapies.

She is coming Wednesday and I can't wait.

I don't know if I'm just getting impatient because I FINALLY feel like we have the help we need or like we're going to get somewhere or if Faith is getting more impatient and frustrated, but it seems like in the past week her tantrums and anger have been bumped up a notch.

Today I got the joy of dealing with a full on tantrum for 20 minutes because she wanted to put on a dress up dress... I had NO CLUE why she was freaking out all of a sudden. One minute she was fine the next she was running to me in tears, pinching me, flailing her arms, arching her back and just being all around nasty...Finally, I sat her down, she clung to my leg like a boa constrictor to its prey and pinched, digging her nails in as she screamed... when she realized I wasn't going to pick her back up she ran over and grabbed the dress and threw it at me...I picked it up and she pulled herself into my lap...still in tears she raised her legs waiting for me to pull it on...

and then...the tantrum was over...the tears stopped, she smiled, babbled and walked off to continue playing and I was left stunned thinking, "WHAT.WAS. THAT!?"

We've had similar tantrums over the last week, but this is the most recent and freshest in my mind...the worst one was last week when she brought me a sippy and I jokingly acted like I was drinking out of it instead of running to the kitchen directly to get her a drink...she melted into a pool of tears that didn't stop for nearly half an hour...she wanted a drink not for me to play with dare I patronize her! Yikes!

For the most part, I try to ignore the tantrums or, when they're bad, I take her back to sit on her bed until she is done...but I'm not sure where the line is- the line that separates the point of being understanding and helping her to understand that she doesn't need to act out and the line of not spoiling her- and I'm not sure where that lies with her. With other little ones I've cared for, the line has been simple and easy to find... you know when they're being melodramatic and when you should scold them for their tantrum, ignore the tantrum, or be understanding to get to the bottom of the tantrum...but with Faith, I have NO IDEA how much gets through and how much she understands so its hard to know how to handle her thrashing, arched back, flailing arms, pinching, etc...

So...I let her have her tantrum, try to snuggle her and then excuse myself to go into another room to breathe or cry...or both...

I have noticed that she WILL respond to physical cues (i.e. If I tell her to "Come here" she won't come, but if I say "come here" while gesturing to her with my hands, she comes.) but I really don't know how to use physical cues to stop a tantrum...

I finally had enough today after our dress up dress tantrum... and decided that I can't wait for someone to tell me what to do, I need communication NOW, and spent the rest of the afternoon while the girls napped, while I should have been cleaning to get my house ready for voice lessons tomorrow, researching American Sign Language teaching aids and looking up the signs for basic words... I have a vague idea of how to teach them, but I need to wait until we've had another paycheck before I can fully implement the plan that is cooking in my brain...

In the meantime, I'm going to start using hand over hand reinforcement to try to show her the signs for basic words that we NEED her to be able to know and I'm going to try to push the envelope a bit when it comes to waiting for her /forcing her to use the signs before she gets what she wants.

When it comes right down to it I know her physical cues when she wants something, but not everyone does...and I would hate to think of what would happen if I left her with someone who didn't know her cues...she needs a more universal cue system and ASL would be a helpful way to accomplish that...Yes, not every sitter is going to know ASL, but with enough advance notice I can let them know what her basic signs are and she can get what she needs without a meltdown... and, most importantly to me, her daddy will be able to understand her too... I think he gets really frustrated with her, followed by being frustrated with me because I tell him what she's asking for but I don't realize I need to tell him until she is already starting to melt down.

In the end, I'm feeling frustrated and overwhelmed.

Frustrated because I have ideas but not the means to implement them right away and overwhelmed because I have SO MUCH WORK to do and so much to learn so I can be a better mom for Faith, the mom she needs.

Ms. Carrie is coming Wednesday to work with Faith and give us the complete results of her evaluation, in 2 weeks she will try to do the hearing test in our home and if she is unsuccessful, we have to go the route of taking her to an audiologist and having her put under general I'm REALLY praying she tolerates the test in our home.

In the end, I have to remind myself that slow and steady wins the race. Yes, I have a lot to learn and a lot of work to do, but I don't have to do it all at once... and the biggest blessing is knowing that I am going to have the support to do it here.

 I just continue to pray that God will continue to lead us to the right doctors and therapists to help Faith be a clearer communicator...whether that means we learn ASL as a family or she slowly starts to find her voice, I will be happy as long as she can communicate her needs and not be so frustrated by other's inability to see what she is asking for...

I know we're on the path...we're travelling that path a little more slowly than I would like but I feel at peace and know that we're there... sometimes you just have to look for the glimmer of light in the darkness and take a step at a time, but its better to take it one step at a time than to stand still...

In the end, Faith is still Faith. For the most part she is very happy and sweet. She loves to twirl and giggle. I couldn't be more blessed to have her in my life. I work hard every day to be the mom she needs because she DESERVES to have a mom that will work to be better. I love her so much, I just want to know that she will be healthy, happy, and have all the tools she needs to accomplish what the Lord has sent her here to do.

Hugs and loves until next time, darlings.


Lisa said...

My dear you amaze me! Although I don't have a child with ASD, we went thru the same annoying steps and felt like we were going over and over the same things, but eventually something works. Hopefully I'll have a great blog post on my answers in life this weekend (I have to get the notes from the RS teacher from Sunday!). Anyway - loves to you for being an amazing mother!

The Henderson Family said...

Hi, Brittany. I was directed to your blog by Heather Vickery, for you meal plans. Of course I'm a snoop, and have to read all the other stuff. :)
Maybe I haven't read enough to really know a lot about Faith and her situation, and I'm not an expert...But I thought I'd share a little about my sister. When she was young (18 months to age 8) she threw HORRIBLE out of control tantrums. You wouldn't believe them...Well, maybe YOU would, but most people never would. She quite literally foamed at the mouth. Hitting, kicking, screams, throwing herself on the ground, bashing herself into walls, weeping, wailing. They'd last 20, 30, 40 minutes...and she'd do it 3, 6, 9 times a day. I can't imagine how that must have felt for my mom.

So why did she throw these fits? Frustration. She couldn't communicate. She couldn't communicate until she was almost 4, which means her basic words didn't really start forming until she was 3. And she didn't have REALLY good communication until 6 or 7. So when all the other kids were speaking in full sentences, she could barely form DaDa.
And why couldn't she communicate?
She just couldn't. Or didn't? We don't know. She has NO Autism, although maybe someone would have thought she did, because it's hard to be socially "normal" when you can't communicate "normally". She had NO hearing loss, not tongue tied...and no developmental delays other than that. She just couldn't learn to talk.
Although once she started....:) LOL, there's no going back. Now at the age of 27 we wonder if maybe we shouldn't have pushed the talking thing with her ;)

I don't know if any of this is helpful, I just wanted to share that MAYBE there is nothing wrong, and she's just going to take her time. My sister was 2 weeks over due, and is late to everything. She just likes to do it on HER time.

But whatever you find for Faith, it sounds like you are going to be OK. We all have days, bad kid days, bad mom days, overly exhausted days. We all have kids with their own special needs (don't even get me started about my oldest!), and it seems like the really important things, you already have. You love her, and you WANT to help her. And you have the understanding of our Heavenly Father's plan and His help. Hang in there!

Sister Brittster said...

Thank you for sharing your sister's story and your kind words.

We definitely have our trials with my Little Diva, but she is happy for the most part so, fortunately, the tantrums aren't as frequent as they could be.

We're working with a wonderful speech therapist who has a plan and has dealt with many, many children over the last 20 years that have speech delay. We are definitely blessed that she was assigned to us through the Wyoming Infant Toddler Program.

I don't know when my Faith will start talking, but I definitely know that we are doing all we can for her at this point, and that makes me feel a little bit better.

Heavenly Father has a plan for all of us and who knows what lessons I am meant to learn from this journey with my daughter, and what she is supposed to draw from it that will help her in the future...what I do know is I'm just going to hold on for the ride and have faith that we will land where we're supposed to.

Thanks again for your kind words of encouragement and support! Feel free to snoop away. I have nothing to hide. :)