Regression

Aislin is 14 months. I haven’t written in awhile b/c she seemed like she was doing so good. She’s been smiling and laughing up a storm. She’s been pulling herself up and tries to cruise.

Today was a hard day. Early Intervention came and noticed something that I have noticed over the last couple weeks. Aislin isn’t really able to grasp onto toys anymore. When she eats, she picks up whatever she is eating, takes (or tries to take) a bite, and then drops whatever she is eating. She is constantly banging the table or flat surface with her hands and she always is playing with her hands. She stares at them like they are the funniest thing ever. And she clasps and then releases, clasps and then releases if that makes sense.

To say that I’m not scared for my child would be a lie. I am truly convinced she has Rett’s Syndrome. Even the Early Interventionist looked concerned today even though she really didn’t say anything except for ask if she can normally grasp onto a toy and hold it.

The last couple of weeks Aislin has been doing something too. She falls back onto her back and just lays there. She can’t get out of the position sometimes. She only rolls over to her left side.

I dont know if I just want to scream or cry or both. I love my daughter more than anything I have ever loved and it kills me that she may have something that is going to debilitate  her for her life.

I was doing so good these last couple months. She learned how to clap a couple weeks ago. But I feel like everything is being pulled out from underneath me today. Just the look on EI’s face concerned me. And I know she didn’t mean to look like she was concerned but you just know when someone is concerned about something by their facial expression as well as their body language. My heart sank. I shut down 10 minutes before she left. I don’t know what to do anymore.

I’m tired of people saying she is just doing Aislin time. Something is wrong with my child. I know it. My gut is telling me. She’s  14 months and can’t even hold her bottle for Christ’s Sakes. She was able to grasp things and pick them up, now it’s as if she really struggles with this.

I pray to God she doesn’t have Retts. I pray every night. But then what else could it be? I mean I know it’s “rare” but how rare is it. 1 in 10,000… This doesn’t mean she is not one of those 10,000 children.

I’m so concerned about what her future looks like. I don’t want my baby suffering and not being able to tell me what is going on with her.

No one ever tells you how hard being a parent is. I mean they tell you to an extent but they tell you in regards to a normal, healthy child. No one tells you how hard it is when your child is different.

I just feel sometimes all alone and carrying the burden on my shoulders. I think sometimes maybe I’m diagnosing her too soon or misdiagnosing her. But my biggest fear was pretty much revealed today b/c not only am I seeing it but someone on the outside is seeing it as well.

 

 

 

 

 

 

 

 

What MAY Come

I was doing really well this week until I started looking again.

Early Intervention came today and we did a 12 month checklist.

The girl that comes to the house mentioned something about lower muscle tone and my heart sank. While Aislin is pulling herself up, sitting, and crawling at 13 months… she does have lower muscle tone in which is a sign of Rett’s along with other things. I know I shouldn’t do this but then I looked again. I need to stop.

I need to stop diagnosing her.

But I am so worried about her. How can I not be?

I ran across this page jointeamblake.com and the little girl reminds me of Aislin so much even though she is older. The only thing that is not the same is that Aislin has been developmentally delayed all along but she does learn.

I dont know what is different about my daughter but I know it’s something.

I just hope it’s not what I presume it to be.

New Week

Today is starting off to be a good day.

Yesterday, I was still a little emotional but today I woke up in a better mood. I don’t know if it was because of the moon or not but something has definitely made me feel a little better.

Aislin was a little slow to wake this morning but once we got back from our drive she was crawling around, playing with some of her toys, and she actually ate a cookie with her hands.

I know this doesn’t seem like much but for her it is.

I guess I just have to accept what God has given me. It’s really not going to be easy if there is something truly wrong, but I guess I just have to realize I can’t change fate. I can make it better and more bearable but I can’t change it.

Depression and Anxiety… Good Grief

Ok so I was good up until this week.

I was strong always trying to be positive about my daughter. My husband has had a few meltdowns in previous months but I always tried to be positive about her. Hell, with Early Intervention she sat at 10 months, crawled at 11 months, and started standing and pulling herself up just this month. But I’ve also noticed many things.

She has always had something with her hands. They are constantly moving. She puts them outs if she is flying and doesn’t necessarily flap her hands but moves them in odd ways. She doesn’t respond to her name. She is not social. She has difficulty feeding herself. She mostly only eats pureed foods and yogurt exclusively. She rarely smiles and laughs and if and when she does… you have to force her too. She has been standing for less periods of time. Her crawling has become more and more clumsy. She doesn’t hold onto her toys for very long. She doesn’t seem to be interested in playing with her toys lately … all she does is scream and cry. She has always been a miserable baby and I thought the Prilosec was working but now it’s an angry scream and cry. She puts her hands in fists and screams angrily. She’s still babbling. She stares off into space and you can’t get her attention to save your life, she’s constantly in her own little world.

I have been having meltdowns all week. Holding my baby close and just crying. I think about something and I cry. I am barely able to eat and I am so filled with anxiety that I can’t even sleep. Not to mention Aislin has been waking up in the middle of the night in crying fits like she used to up until 9 months old.

I have consulted a therapist and I am going to see her October 7th. My husband suggested it. I have to be strong for my daughter … for my family. I want to be strong. I don’t want to feel like this.

I talked to my mom and my best friend Lyz last night. They made me feel a little better. But the one thing they did ask is if she does have something seriously wrong with her would you love her any less? And the answer is consistently no. How could I love her any less? She’s my baby. Something that I have been looking forward to for so long.

Am I mad and scared? Yes. Did I think that I would have to be thinking about this? No. Did I think I would be bringing my daughter to her first dance class at 3 years old? Of course. Did my husband always laugh and still laugh that she is going to be an amazing snowboarder? Yes.

I am hoping that some of this grief and anxiety is because of what I have read about Rett Syndrome. I’m hoping that I am looking into it way too much. That maybe I’m seeing things that are not actually there. But in all honesty, you know your child and you know that something just isn’t right. November 2nd can’t come soon enough but then I don’t want it too. How about if I am right? How is this going to affect our lives? Our beautiful daughter’s life?

You know. I think there are reasons you meet people. I was looking for something to do since I decided to be a stay at home mom. I answered an ad to drive this girl with special needs to school. She is the sweetest girl and she has learning issues. Her mom is maybe the next sweetest and calmest person I have ever met. Granted I do not know her full diagnosis but I will tell you this, her mom is an inspiration. And if Aislin does have issues, I hope I can keep it as cool as she does. I hope I have the faith and the courage to handle this.

I’m not so sure right now. I feel like I am constantly going to break down. And my husband… he has been amazing through this all. I love him more than anyone I have ever loved. He is a great father, friend, partner, etc… And I never want that to change. This is why I need to get help. I need to be able to control these emotions that I am having. I need to learn how to understand whats going on and be strong for the ones that need me the most.

This journey made not be easy but it’s my journey.

8 Months

I don’t even know where to begin.

Let me start out that I love my life. I love my husband… I love my beautiful, beautiful daughter.

Around 6 months old, Aislin wasn’t reaching her milestones. I told her Pediatrician (who I don’t care for) and she told me that maybe I should reach out to Early Intervention.. In which I did.

Early Intervention has been great. By 10 months Aislin sat up, 11 months she started to crawl, and now at a year she is trying to lift herself up everywhere.

BUT there’s something wrong. She is not social.

We take her to group and while all the other children are laughing, clapping their hands, etc… Aislin sits there looking at the ground staring into her own little world. She is so cute (and I may be bias here lol) so a lot of people come up to her expecting this smiley baby when all they get is her looking at the ground not even engaging with them. It breaks my heart.

You see I thought I was STRONG. I thought I can handle anything. I thought. I thought. I thought.

I have been breaking down a lot this week and this is why I decided to start a blog. Maybe I am crazy. Maybe anxiety is making me see things, who knows. But have you just ever wanted to read something that someone had the same thoughts and worries as you did? I know I do.

I’m hoping this blog will not only help other mothers or fathers out there but also heal me in the long run. I want my journey, my daughter’s journey to help people that know that something just isn’t right. I’m sure you all are sick and tired of family members and friends saying that “they are fine,” “you are worrying too much,” “you are a first time parent.”

No, I’m not stupid. No, I’m not making this stuff up. No, she doesn’t act like other children. Ok?

So 8 months… why did I name it this? Well you see Aislin turned a year last week. We have reached out to a developmental doctor and are just waiting back. The paperwork has been returned twice now for missing info and/or not being able to upload it to an email. The wait if they accept Aislin will be for approximately 6-8 weeks. From what we know if she has any sort of form of autism, they won’t even diagnose it until she is 18 months. We are giving ourselves 8 months to try and not to worry about the outcome. Even though it’s hard, we have to try.

Then there’s the God Awful internet.

I have been doing too much research and I need to stop. I think this is the main reason I am posting. Because I really am scared. Aislin is very clumsy crawling, she recently has been holding her hands together in front of her, she licks everything, she’s been so irritable ever since she was born, she doesn’t make great eye contact, when she isn’t holding her hands they are out as if she flying… I first thought Autism but now that I read into things and see things I have this HUGE fear now of Retts Syndrome. And it breaks my heart.

Maybe I sound crazy. Maybe I sound like you. Someone that just wants answers but it’s been this huge waiting game.

I just know that whatever it is… I will love this child uncondtionally and try to make her life as easy as it can be. Am I angry? You bet. Am I sad? Def. Am I confused? The most confused I have ever been.

But in all honesty if you were to ask me if I would do anything different or if I had a chance to have a “normal” child, would I? I wouldn’t give my sweet girl up for anything. I love her so much it hurts sometimes.

I just want to know what is going on with her so the healing can begin.