It’s Been A While…

Hello again, Friends 🙂 It’s time for an update on my DD’s progress and the journey we’ve been on. As some of you may know from my meltdown on FB yesterday, we had an appointment with a pediatric neurologist. It didn’t really go as I had hoped. What did I want to happen? Well… anything. I was hoping the doctor would say, “Ah, yes, this is a case of Blankety Blank Blank. We are going to help her by trying x, y, and z.” But that wasn’t how it went.

After driving 70 miles to get to the appointment, Emmy and I sat anxiously in the waiting room. She brought a shirt from school to help keep her calm. I thought about how interesting it was that she grabbed on to that shirt when we left and held it all the way to the office, then chose to bring it in to the appointment. She sat very still in the waiting room chair until all the patients had gone back in to see the doctor. Once everyone was gone, she got up to play with the shirt she brought. The door opened and she quickly got in her seat. That was the nurse. She just called us back. I took a deep breath and waited for Emmy to begin the usual hide and seek while the nurse coerced her into stepping on the scale. But that didn’t happen. As we stood up, she followed closely behind me. We got to the nurse’s station where the nurse would take her vitals and other information. The nurse asked Emmy to have a seat in the chair and she slowly and reluctantly sat down. I gave her a reassuring wink. The nurse then asked her to step on the scale and she did it! I was so excited. (It’s the little things.)

Anyway, the nurse brought us into the doctor’s actual office. Not a patient room, but where his desk was and where his credentials hung. I started going over in my head what I would say so I didn’t sound silly. What terms would I use so it sounded like I knew what I was talking about? Then I remembered all the information from the past year that I had in a yellow folder I laid on the floor as I waited. Then I stopped and began to pray, “Lord, be here in this office. Fill this office with Your presence.” Emmy was playing Dots on my phone so she was content for another moment.

I heard the doctor coming. He was here. This is it. We are going to have answers and we are going to figure out how to help Emmy deal with all that’s been going on. Here we go….

The doctor opened the door and came in to greet us. He asked me how old Emmy was and after asking her a few questions with no response, he asked me if she talked. I said, “No, not here.” He checked his phone, responded to someone, and he began his exam. Very quick… nothing special…. he gave her a lollipop and went behind his desk. Checked his phone, responded, typed a few things in his computer. Wait? That’s it? He says, “The exam is normal except she doesn’t talk.” Um…..really? “She’s fine,” he says. Uh…..ok….. No questions about past history? No questions about how long we’ve noticed these things? No questions about other therapies? *Checks phone again and responds, Types a few more things into the computer* I’m getting a little annoyed at this point. Did we really drive all this way for that? Did we really wait six months to hear that? My mind is going blank because I’m just in awe that that’s all he had to his visit… He asked me a little bit about the mutism. “Does she talk normally at home?” Yes. “Does she talk to visitors?” It depends on who they are and under what circumstances. I don’t know how she picks and chooses who she talks to. “She has selective mutism. She’ll grow out of it.” ….. ….. I’m speechless. I ended up finding the words to ask him about a few other things and he suggested anxiety. He said she’d probably need medication if it didn’t get better as she got older. His answers seemed to be sharp knives piercing my heart with quick sarcastic jabs. I honestly don’t know what diagnosis I was expecting to hear but just a few “un-rushed” moments of a caring doctor who wanted to know about all we had been through and a kind and reassuring “It’ll be ok.” would have sufficed. Then he ushered us to the check-out window. I felt like we were tourists with a guide leading us through a place he had been a thousand times. “Hurry along. NEXT!!”

I held back the tears as Emmy and I went to the car. Would anyone be able to help her? Am I crazy? Am I just being a bad mom and all of this is going on because I don’t really know what I’m doing? How will she get through this? Even if it’s only anxiety, how do I help her? How does she learn to cope with stressful situations? How does she learn to cope with her fears?

I vented on Facebook, which probably wasn’t the best idea at the moment. I had a dear friend remind me to keep my faith strong and remember that I’ll love her all the same no matter what. I prayed as I went to sleep that night and thanked God for keeping us safe on our trip. I prayed for forgiveness for being angry. I prayed for answers and God’s will to be done.

I woke up this morning and felt like I was going to take on anything. I am Emmy’s mom. I am her voice when she can’t speak. I am her advocate. I will fight for her when no one else will. I will figure out how to help her, even if I have to do it all on my own.

I called her pediatrician and asked what’s next. Where do we go from here? Do we do nothing for a while? Do we need to go somewhere else? What do we do?

Next up: psychiatrist who specializes in Selective Mutism. I’m so grateful for the pediatrician.When she called me she had just finished looking up SM and trying to make sure she led us down the right road for the next assessment. She was so kind in giving me helpful hints on how to deal with certain things. Looking back on the last few days, I feel extremely blessed to have people in our lives who care. People who sincerely want to help. People who want what’s best for Emmy. If nothing else, God has shown me that though things didn’t work out the way I hoped and the way I would have wanted them to, He is still good. He is still in control. He is still God and He will be glorified.

Until next time, Friends 🙂

Mama Meltdown

Ever have one of those days when you wake up in the morning and say, “Today is going to be a great day!” You have a little bit of quiet time, drink a little coffee, do your hair and get dressed….All before the kids wake up. That’s how my day started. Then we begin our morning routine. Several attempts at waking up the kids. Mentioning to them that they only have x amount of minutes to eat breakfast. Reminding them to brush their hair and teeth. Finding jackets that match specific criteria for cold weather and each child’s taste and comfort. Tying shoes. Asking where their lunch money is. Motivating them to gather all of their school stuff before it’s time to leave. Hastening them out to the car before we are late. You know the drill. Then trying to deal with a “tween” and her hormonal attitude about someone looking at her wrong and her hair not looking right. (It’s funny because just yesterday she woke up singing praise and worship music and then this morning she was ready to bulldoze her siblings to the ground LOL)

I got the first child off to school without a hitch. Then the day morning excitement began. We get to the second school where my two youngest kids go and Emmy decided she wasn’t wearing her jacket (mind you it’s 45* in FL, so to us it’s FREEZING, not to mention the wind is blowing!) and she came to the conclusion she was NOT getting out of the car. I eventually persuaded her to get out. She ran to the front door of the school and kept turning around and sticking out her tongue. She stood at the door with her arms crossed, expecting someone to open the door for her. I kind of giggled because with Emmy, her attitude normally changes when she gets to school so I started to anticipate an about-face. She becomes a quiet, happy kid who always seems content (on the outside) even if she has had a rough morning. We arrived at her classroom, and on a normal morning she will go see the neighboring teacher, but this morning she went straight into her classroom.

After a few minutes of talking with her teacher, I told Emmy I was leaving and she started following me out the door. When I stepped over the classroom threshold I told her she had to stay at school. She bolted towards the door and attached herself to my oldest daughter’s leg. I picked her up and brought her back to class and she started biting my shoulder. As soon as I felt her teeth pinch my skin through my sweater, I knew this wasn’t going to be good. I brought her back to class and she fell to the floor and held on to my leg. Her teacher and I tried for five minutes to get her up, but we couldn’t. Then I managed to slip out of her grasp and make a run for the door.

I almost cried. Typically, this kind of thing happens at home. Rarely does it occur in public, which is why so many people tell me they don’t understand why she needs therapies, etc. I am learning to deal with it at home since we have created a “safe space” for her to go to when she starts feeling overwhelmed or irritated, or when her feelings start spilling over. She’s able to vent through coloring, play-doh, etc. But, we don’t have one of those spaces in public. I called her teacher when I got home and she said she was still laying on the floor with her face down. She wasn’t getting up. I guess that’s better than her full-on tantrums that include hitting and kicking…. 

On my drive home, I thought about how this was another step backwards. Then I began going over the things that have transpired over the last two weeks. First, the occupational therapist called me to tell me she wanted to cut back on therapy sessions because she felt like it’s causing too much stress on Emmy. Then, the behavioral therapist tells me there is no progress being made so we can discontinue services with her. As I’m reminded of these events, I start thinking, “Two people in the last two weeks have given up on her…. Is there hope things will get better? Will she struggle with her emotions and her anxiety for the rest of her life? Is there something I am doing to cause all of this? Did I do something to trigger these disorders? Why are we going backwards?” All of these questions kept coming and then I decided to pray. “Lord, give me wisdom and understanding. Let me see Emmy through Your eyes. Give me the patience and peace I need to guide her, all of my children, to be followers of YOU. Help me, Lord. I’m not asking You to remove these trials, I’m just asking you to give me strength and courage to deal with them. Arm me, and fill me, with the equipment and knowledge I need to succeed in Your will, not only for my life, but my children’s lives.”

When I was talking to Emmy’s teacher this morning, she said something that I keep hearing in my head. She said, “Sometimes I think God gives us trials to help change us (our hearts).” I think she’s right. I think struggles keep us humble and I think they give us an opportunity to minister to others through our pain and through our battles. I know God is good. I know God’s will will prevail. I will “lean not on my own understanding” and “trust in Him”. Lord, I thank you that You have entrusted me with these beautiful children. I thank You that You see a strength in me that sometimes I can’t seem to find. I want to ask that You bless those reading this blog right now. Let them know how much it means to me that they are supporting my family’s journey through this obstacle. Lord, pour Your love on them and bless them with Your goodness. In Jesus’ name, Amen!

 

Cookies

Today was a make-up session with the Speech Therapist since Emmy was sick on Monday. Ms. K says she sees progress…. I don’t but she’s the expert. Plus, I think it’s because I know she can talk and use her picture book so when she goes in there and won’t communicate at all, I see it as a huge disappointment. Then again, I don’t really understand all of the symptoms and expectations of these issues she’s having.

We used a bit of bribery today. We had mini-Oreo’s!! Ms. K had been using them in other sessions but this time we didn’t just use them at the end of the session. We used them to get her to put a puzzle together. While we are in these appointments, it’s like Emmy won’t even communicate with anyone AT ALL. For example, we were trying to put a puzzle together. It was a simple animal puzzle that already had the spaces for the animals to go. She just had to put them in the right spot. Well, she would take my hand and make me pick up the animals and move my arm to put the piece on the board. At first, I was frustrated because I thought SHE should do it. She knows how to put that puzzle together. She does it at school. Why won’t she do it in here??? But, I guess because of her anxiety, it’s a problem just to interact with others she’s not yet comfortable with. So Ms. K said it was ok because we are focusing on the interaction. So she started putting the animal pieces in the wrong spot (or using my hand to put them in the wrong spot because she wouldn’t pick up the pieces). Ms. K told her that if she put the puzzle back together the right way, she would give her a cookie for every piece she put away. Well that worked great for putting the puzzle back together, but she was still trying to manipulate my arm to do it. I gave in and let her use my hands as tools because that was her way of trying to get comfortable in that environment. Now I can hear the comments already….”She’s playing you like a fiddle!!!” “All she needs is a good spanking.” I wish that was the solution to the problem, but it’s so much deeper than that. I know that we all like to cast judgement on people, but I ask that you reserve that criticism and know that this is different than just a kid who doesn’t get disciplined. Know that we are parents who don’t allow a lot of TV and violent video games. We love our children, but we are pretty firm when it comes to rules and what our expectations are of them (reasonably, of course).

Anyway, I always appreciate the support of our friends and family who read my journal/blog. I love you all and I continue to ask for prayers. Thank you ❤

2 in 1

This week has already been crazy. Five out of six of us had a stomach bug for 24 hours. That was NOT fun… Today, we had speech and occupational therapies. First was OT. Emmy was anxious about this appointment from the get-go. She had a small fit in the waiting room because she wanted to color on my phone (I have an app that she loves on my iphone for coloring). She didn’t want to give up my phone to go to therapy, but I think it was because she had anxiety about going in. Once we got in there, she was trying to be invisible. Ms. A said she needed to get comfortable and thought she’d be better if I left the room. I already knew that was not going to happen, but I have learned that sometimes the therapists need to SEE for themselves what I’ve been experiencing. So I got up and told Emmy I had to go potty and I’d be right back. She started screaming and clung to my leg. Ms. A tried to hold her and she screamed louder and started kicking and flailing every which way. Needless to say, I didn’t leave the room. Ms. A said that was true separation anxiety… After that, she completely shut down. She laid on the floor and didn’t want to look at anyone or anything. We let her calm down and just talked about a few things. In the midst of the anxiety at the beginning of the appointment, Ms. A said she could see signs of SPD. I told her she was the 4th person to tell us that. She suggested we look into seeing a specialist to make sure she is getting the treatment she needs to overcome some of these issues. She said the fits and tantrums Emmy is having are not age appropriate. Yes, four-year-olds have tantrums and fits, but they aren’t as bad and frequent as these. Ms. A said she would research a few things, but she also suggested a beanbag chair. She said it would help Emmy comfort herself. We also talked about a diet that included more protein to even out her energy levels during the day because some kids have these tantrums due to nutritional deficiencies. So during Christmas break we are going to try adding protein snacks every 2 hours. Forgive me ahead of time because I am using this blog as a journal so I’m probably going to post the results of the diet 😉

Then we have speech therapy. We are still trying to get her comfortable using pictures to communicate and Ms. K was showing her a few signs to see if Emmy would use sign language. Emmy made a snowman today by using the pictures to tell what she wanted to decorate with next. For example, there were pictures of a hat, a scarf, twigs (for arms), mittens… When she wanted to put the hat on the snowman, she had to point to the picture in order for Ms. K to give her the hat, etc. That went ok, Ms. K said she saw progress. I think Emmy is more prone to using the book without prompting or force, but when she wants to use it…

I could use some prayer for my mental stability. Every time we leave a therapy session I feel like I am going to have a break down. I feel overwhelmed and I’ve realized that this “disorder” has shaken everything I’ve ever known about motherhood. I’m praying that God gives me wisdom, discernment, peace, strength, and healing (for Emmy). Pray for Emmy to receive healing and understanding. Thank you for your prayers and listening ears. It means a great deal to me ❤