Learning Something New Everyday

Autism

I am so ever grateful for all that has been accomplished these last 6 months. I look back and realize how far we have come although there are still some things I wish we could make better. I’ve realized that my anxiety still plays a part in my life which can be quite unhealthy for my children as well. We have already gone through enough as a family and I wouldn’t dare put no more on them than I feel we could handle. I have even gotten so accustomed to what works out best for Harmonee that I don’t even make decisions to do things if I don’t feel like it will be a smooth experience. Anxiety runs through our blood. I’ve had anxiety my entire life. Ever since the first day I stepped outside of my home after my eye injury (age 5 years old) I’ve had anxiety, which turned into fear, which turned into insecurity, and ended with bipolar depression. I was also diagnosed with ADHD around the same age which didn’t make it any better because I acted on impulsive behavior. Growing up, with all these known disorders and disabilities led to years of taking meds to control my body, thoughts, and actions. I took these meds all the way up until I found out I was 9 weeks pregnant with Harmonee. Pregnancy was absolutely normal! The day she was born, she showed me the signs then that she would be different. The pediatrician, at the time, told us she thinks her hip was out of place and told us to double diaper her until we could get an X-ray. I thought it was a crazy idea and I didn’t because it just looked uncomfortable to me. The X-ray came back good and they said she just might have outgrown it. Then when she was around 2-3 months old she started doing this thing with her head almost like her head favored tilting backward ( I know you are probably thinking, well she is still a newborn, so of course her head isn’t going to be strong) this was obvious to be unusual. Almost like her neck muscles were weak. Some of our friends would even ask why she did her head that way and we thought it was weird but we just brushed it off. Well I realized after reading so many articles last year that both of those signs, leg and hip weakness and the weird neck thing, could have been signs of hypotonia which is defined by muscle weakness and it plays a role in the Autism Spectrum Disorder. I’ve always noticed she had a special look in her eyes, almost like she would transfer into her own world, a gaze off kind of look and she still does.

 

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She gets caught up in the moment and just shuts the world out sometimes.

She would cry so easily and a lot more than my youngest has ever cried. It would take hours to calm her down some nights and we eventually learned that she gets easily overstimulated, as she still does. It was always hard to go places or do things with her because she would have crying spells from anxiety or just getting overstimulated so easily.

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This picture was taken at my graduation dinner in 2014 and she had cried so much that a near by stranger eating at the table next to us whispered to me “there’s just too many people handling that baby” it was almost hard to enjoy that evening.

I built anxiety and doing things alone with her, I always had to have someone or my husband with me because I felt I would need the help while handling business. We were 100% done with daycare by the time she turned 15 months old mainly because I couldn’t work consistently enough to make money for bills because she was either always getting sick or I felt that being at daycare around so many different people was too much for her. Every other day I would pick her up from daycare with a swollen face from crying so much. I felt it was best for both of us to just stay home. Then when 18 months came around, I started noticing how DIFFERENT she was from other kids her age. Not just the nonverbal cues, but the way she walked, the way she didn’t play with toys, the way she literally fought us when trying to feed her new foods, the way she would completely shut out the outside world or people that tried to speak and play with her, just a whole lot of abnormal behavior.

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After the diagnosis is when her sister finally started growing her own personality and it all started hitting me.

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Paidyn is truly something completely different from Harmonee, I thank God for Paidyn coming when she did because she levels the entire family out. Paidyn shows me everything that I never got a chance to see in Harmonee. They are such uniquely matched up sisters. Harmonee adores her baby sister, even though it took a while for her to get use to the new annoying noises she use to make as a brand new baby (very challenging first couple of months) she really shows me she pays attention and knows Paidyn is someone who belongs to her. I love it and wouldn’t change anything about how my life has transformed. I learn from the both of them everyday. I’m learning to control the level of anxiety in our lives for the sake of our mental stability and health. If I have to cancel any plans I don’t hesitate. My husband has been away on active duty for 6 months and I have learned so much about depending on others. I only want the best for my children and I feel like every opportunity they have to be a kid I want to make sure they are involved. Sometimes that’s not so easy, being a single parent is hard enough but with two it’s even more challenging. I’m always stressing about one missing out because the other would need more attention. I would try my best to keep them involved but if I didn’t have the extra help, I don’t go. I’ve recently learned not to depend on extra help to do things, because if my husband ever gets deployed I will be far away with little to no help on my own with them anyway. I had to put my big girl panties on and just learn how to keep praying for more time to spend with my children while they are still young. I also pray that God provides us those sentimental times together to outweigh the times we have missed. I also pray that God continues to work on taking anxiety out of our family and to break that generational curse of fear, insecurity and depression! I pray that God continues to heal our family and to give us strength every day for the sake of our purpose! I also pray the same for you as well!

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A Day at the Zoo

Autism

 

Yesterday, my mom and I decided to take the girls to the zoo. It’s beginning to warm up but it’s not too hot or too cool. The kids were all in school so we just about had the zoo to ourselves which was very stimulating for all of us. Since the SLP gave her us another term to her diagnosis, echolia. Which basically means in regards to her receptive language delay, she doesn’t know how to process responding to a demand or much of anything, so her best way to respond is to imitate what she just heard, answering a question with the same question. I had read about this before but I kind of wanted to stop putting labels on her complications. So this day was very much needed. Harmonee loves this app on her iPad that names all kinds of animals with pictures and the animal sounds and I notice how she will spot out any of her favorites in real life. So I really expected this experience to be very interesting.

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Just as I expected she named a few of her favorite animals when we asked “what’s that?” . *sigh* the sweet sound of her voice I just wish I could hear so much more. Don’t get me wrong, I am truly grateful that she can expressively say a lot more but communication still takes a whole lot more to accomplish. Her receptive communication is our biggest setback. We still have to do hand-over-hand and walking her through things but sometimes it just doesn’t really stick as much as we would like it to. Some things that I get emotional about is the fact that she can name a lot of things but if we ask her to show us or point to something that she knows by name, she still wouldn’t have any clue what we are asking her to do. I can’t to her like I can talk to her 3 months older cousin about why she can’t do something because she may get hurt and other things that you can actually have a conversation about. She has 3 kids in her class that are always trying to hold a conversation with me when we come in and it just melts my soul that I can’t talk like that with my own daughter. The zoo really made a bittersweet moment for us, despite of the lack in communication I was absolutely blown away at how interested she AND her 10 month old sister were. At that age Harmonee was not as attentative or easy to please at all, but I’m so thankful for seeing so much growth on this day! To watch the full video of this beautiful day visit¬†A Day at the Zoo¬†!!

My Passion

Autism

“I hate autism” is what I see sometimes while scrolling through my Facebook groups. I’ll admit, I couldn’t possibly imagine dealing with some of the symptoms that come with autism on other levels that Harmonee doesn’t have. Every autistic child is different from the next. It hurts me to see that it affects others lives so much more than it affects mine and I am left speechless at times. “Stay strong mama, you got this” just doesn’t seem like enough but most of the time just hearing that “you are doing a great job” or “you are being a great mom” sets aside those negative thoughts. I have yet to use the words “I hate autism” but there have been times when I would get angry and frustrated with “it“. Before understanding any of it, I have to be honest, I yelled and screamed a lot and even had my own meltdowns. Oh how I wish I could take it all back. The fear in my daughters eyes towards me just crushed my soul and I just couldn’t apologize enough after needing a moment to calm myself down. I wanted to believe so bad that I wasn’t upset with her but more so with “it“. I want to ask “it” so badly, “why do you make it so difficult for my child to use her words; why do you make it so complicated for her to relax; why do you constantly wake her up in the middle of the night; why do you keep her from eating like a normal person; why this or that….just WHY?!” It’s so many things I can get so angry about but there is so much more to it than I imagined. Harmonee may not express emotions very well but she is super affectionate when she wants to be. That shows me, she is learning how to love and care. She is so adventurous and gets easily excited, that shows me that she knows how to live and enjoy life. Even though her communication is delayed that doesn’t stop her from being so smart and influenced by the things she has learned at an age that it is not common to know at. Like most people on the Spectrum, they have great minds like a genius and it is so amazing to watch. I’m so PASSIONATE about my children so much that I lost focus on myself to focus on them. The more I learn about my daughter’s disorder the more I look at how most people can take life for granted. We look at our circumstances and dwell in them and forget the most important things in life outside of our circumstances. I felt like I was a victim of imperfection. Here I am with a child who doesn’t talk like normal toddlers, doesn’t eat right, communicates through crying and screaming etc. Wondering to myself, was it something I did? Is it because of all the years I suffered from ADHD and depression from being terrorized by my peers for being so different. Constantly dwelling on being traumatized at the age of 5 from an incident causing me to go permanently blind in one eye. Taking all kinds of meds to keep my mind off of it all and of what was going on around me. Of course I stopped taking them all after finding out I was 5 weeks pregnant. But since I stopped taking them, were my emotions so high and low that it caused my body to stress during my pregnancy? Were the meds the cause? Were her vaccinations the cause? I stopped wondering how and why and decided to just deal with it. God has a purpose for everything. I am humble because of my flaws. Now I am humble because of my daughter’s flaws. So I’m determined to use what God has given us to be by the side of others. I was lacking support for a long time and still am in some areas but I have been dealing with it long enough to say “we have each other, and that’s all that matters” because who can do this job better than God and ourselves. Absolutely NOBODY.

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iAutism for Her

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All I can do is Walk Away

Autism

Some things are extremely hard to take lightly. Especially when it comes to dealing with people who are constantly bugging you about what THEY believe to be the solution to your child’s problems. I try to refrain from explaining everything in detail about her struggles and the issues that we are constantly battling but sometimes even if I do explain, it seems like it’s never enough to the non believers or the in denial ones.

PreLaunch for Valentine’s Day

Autism

Valentine’s Day is next week and since daddy is still away we won’t be able to spend Valentine’s Day with him. So I came up with a way for me and my girls to create memories together. Many people like to compare autism to puzzle pieces because not all autistic people are the same just like puzzle pieces are said to be different in all shapes and sizes. I know Monee has a heart that absolutely NO one can compare to and if we don’t fit in anywhere else, we can be sure that we fit into each other’s hearts. No matter how big or small our pieces are we always find a way to make each other’s heart stronger. I thought I’d share the love as well. Follow the link for details!#iAutism