Tag Archives: Asperger Syndrome

I have no clue what i’m doing….

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So, I had to teach my almost 12-year-old how to shave her legs last night. Now, this would see to be exciting for most moms. Their little girl is growing up, making changes and so on. But my situation is different. My daughter is 95 lbs and I’m still bathing her, dressing her, helping her brushing her teeth and comb her hair….you get the point. Kali is special needs. She has made some of  the most remarkable changes in the last few years. I am overjoyed, everyday at a new accomplishment she has made. God showed me her healed and whole and that’s all I have left to hold on to.

Let me let you in on a little secret…..I have no idea what I’m doing. Little things pop into my mind, “What if I can never go on vacation with just my husband?!”, “What if something happened to us, who will take care of her?!”, “She’s off today, did someone hurt her at school?!”, on and on and on…This is real. I can’t remember the last time I had a night away with my husband, let alone an actual vacation! Shes easier to look after now than an adult version! So my need for rest and a break, leak. It leaks into every crevice of my home and life. I find myself exhausted at the simplest of days, short-tempered at the littlest things and unable to give anything else. I feel things unravel rather quickly when I get this way. I panic. People say things like, “You can do it, God knew you could”, “He wouldn’t have given you this if He didn’t know you could handle it!”. Are these comments suppose to be helpful?  If you have a friend going through anything, don’t say these things to them. They aren’t helpful. You know what is helpful? Hug them, cry with them, pray with them, laugh with them, just check in on them, offer to give them a break, pick up the kids, run some errands, pour them a drink…. those things are helpful.

So I find myself at a cross-road, I can spiral deeper or suck it up buttercup. Lets be honest here, I have like a small window to panic, cry and then I have to pick myself up and move forward. I don’t have the grace to just check out. it doesn’t work that way. I find my center. I read, I clean, I take a walk, workout, cook…whatever. I do something to remind myself of the air I’m breathing, the ground beneath me, the sounds that I hear and the fact that I’m okay. Maybe I paint or write a song. Whatever it is, I find my way back to the present. I reel in the thought process that can get out of hand. Take it one day at a time, take a deep breath and move forward. This is an ever evolving process. I can be good one min and then something can take me for a ride into the “what ifs”. It’s a fight at times and other times I laugh that I even let myself be swept away. But this is real. This is the battle that we have has moms or parents. Weather you have a child with special needs or you’re in the terrible two’s, the preteen, the teenager years, or whatever. We go through things, we believe we have no clue what we are doing, we would love some paid vacation leave. Find your center, find what aligns you, give yourself grace, grace and more grace, love yourself more, think happy thoughts, laugh at everything and nothing, cry when you need to, morn the perfect life you had painted in your head and celebrate the imperfect perfect life you have, play with your kids, imagine, dream and dream some more. Ground yourself in the present moment, remember to love life and when life beats you up a little, take a deep breath and find your center again. Most importantly, remind others to do the same. We forget sometimes…

We all need to be “Special Needs”….

Its been a while since I’ve posted anything. No reason really, just sometimes you don’t feel like writing. There has been a lot of shifting and changes that have happened in the last year. A lot of “stuff” going on. Stepping outside the whirlwind and looking at everything from the outside in can be helpful in order to gain perspective. I’ve had many conversations over the last few months about whats happening in Syria, Israel, Iran, Iraq, Pakistan,China, America, Japan, Canada, Mexico and so on. The one common thing I have taken away from every conversation is, when did we stop treating people like human beings? When was the decision made to “love” people from a distance? I’m guilty of this too. Not pointing fingers here, but if this does stir something inside of you maybe you should look at that….? I wonder what it would look like if we just loved on people with no agenda attached? None.

I watch my daughter get on the little short bus every morning for school. She has no agenda for the day but to just be in the moment. Every step she takes is another opportunity to see the beauty around her. She loves fiercely and without a second thought. She watches people intently and tries to communicate with them on their level, even if she doesn’t understand how exactly. She sings off the top of her lungs anywhere and everywhere we go. No, really, everywhere. She dances any time she pleases and doesn’t give a crap whose looking. When someone is sick, she is first in line to pray for them and is always asking about them until they are well again. When someone is hurt or in trouble, she cries with them or for them. If your heart broken, so is she. The interesting part about her is, we call her “special needs.”

Its funny that we call her a special needs child. She has taught me so much about how to treat people, how to slow down and how every person deserves a hug from time to time.  Now, there are bad guys in her world and this is reality, but she slows down enough to accurately see who is who. Kids do this. Kids have this way of loving with no agenda and seeing right through the crap. We get a hold of them and mess it all up.

I would encourage you, myself included, to slow down, take a deep breath and ground yourself in the moment. Whatever that may look like….at work, at a desk, in your car, at the DMV, at the park, at the grocery store, with your baby, with a sick relative, at Starbucks, wherever you are, just be ever present and watch how easy it is to connect with people around you when your agenda is checked at the door.

A long way from home….My journey as a mom having a child with special needs (Part 2)

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Like I had said before, this is going to take me some time to write because of the tender nature of the subject for me. With that being said, this is part 2 of my journey with Kali girl.

After the initial scare with Kali when she was a newborn had passed, the next few years were what I would call, normal. Anyone knows that no 2 children are alike. We are all so different and so perfect in our own ways. Well, that’s how I looked at my girls. My oldest was extremely bright since birth. She was always that happy child and overly creative. Kali was a little different. Not different bad way, different like every child is from one another. She was such a happy little girl. Always smiling and loved the camera. My little poser. She has always had the sweetest spirit, very loving and always had these eyes that when you looked in them, you knew that she was a deep well. Lets fast forward a few years.

We are now at age 3 and my sister and I are both coaching girls soccer for both Kali and Chloe, my oldest. If you want to learn patience, come from competitive sports and coach 3 and 5 year old girls soccer. 🙂 We were hosting a team party for both the teams in order to talk to all the parents. There was about 25 kids in my house at one time. Kali didn’t want to go hang out with the kids, she wanted to be around the adults. Ok, fine. No big deal to me. At the time, my sister was a teacher and was originally going to be teaching special education. While we spoke to the parents, Kali walked around fixated on a soccer ball, but only having one sided conversations. She was what we call, “Stuck in her own world”. My sister turned to me and said, “I think you may want to get her tested…”. Now, I’m not the type of parent that’s in denial, I realized there was something going on that day that didn’t seem “right”. We took her into her Dr.’s to get evaluated and they diagnosed her with Asperger Syndrome. Now, I didn’t know a thing about this. Being me, I dove in, read everything and studied everything I could get my hands on. Autism wasn’t rampant then, there wasn’t a lot of information about it really. it was still considered a newer diagnosis. I soon realized that she in fact, did not have Aspergers but they really didn’t know what was happening. Fun fact, Aspergers can not be properly diagnoses til the child reaches at least Jr high….So there you go. She was 3, not 13.

After this first diagnosis, things started to spiral down hill fast…Kali was then diagnosed with Pica and started eating dirt, glass, rocks and other non edible substances. She would take the glass balls off the Christmas tree and eat them like they were apples. Glass everywhere. She ate my Best of Sinatra CD…like chewed it up….such a good CD too. (shes was never hurt, don’t worry) She was now in preschool and was tested in. They had her under the Autistic Spectrum. She had also been diagnosed with Sensory Processing Disorder. Basically, this means that when we need to move our arm for some reason, our brain signals our arm to move. This is a process that happens without us having to give much thought about it. Kali’s brain wasn’t working that way. If she needed to move her arm, she would study the other children on how to do so, then, eventually her brain would send a signal to her arm to move. This is the easiest way for me to describe it. Nevertheless, this was extremely difficult to get Kali to respond to anything because her brain wasn’t processing it quick enough. So, I have a soon to be 3 1/2 year old who has (according to the Dr.’s) Aspergers, ASD, SPD and Pica. This was a lot to chew on, fast. I didn’t have time to sit around and feel sorry for myself. Early intervention is key, so I got to work fighting for Kali. We thought our life was beginning to get some kind of order to it. Then, everything changed….

I remember the day like it was yesterday. I went to go lie down, I had been in my room for maybe 30 minuets and I hear my husband yelling Kali’s name. I knew something was terribly wrong. Its that sense you get as a mother that something is very wrong. I flew out of bed and ran in the room. My husband had Kali standing straight up. Except her feet weren’t touching the ground. She was stiff as a board, non responsive, not breathing, jaw clenched and eyes rolling back in her head. My husband was panicked, absolutely beside himself. “She wont breathe! She wont breathe!! Come on baby girl, come on!! BREATHE!!”  I immediately called 911. This went on for what seemed like forever. Everything slowed way down. I could hear the ambulance in the distance and ran to go open the door. They rushed in and she had  finally come out of it. They took her, again, by ambulance to the hospital. I was in the back of the ambulance with her. She was really out of it. Very tired. The paramedic tried asking her questions and she wasn’t responding. They rushed her in, she was on oxygen and a very scared little girl. She had a seizure. A very large one and this may have not been her first. My brain was scrambled and I couldn’t breathe. This is not how I envisioned my life! What did I do wrong?! Its funny how we think situations like this are a punishment. Its easy for our brain to think that this child was “broken” in some way, that I did something to “cause” this to happen. I was only just 23 when I found out how strong I was, when Kali first stopped breathing and 26 when I found out how completely wrong my thought process had been…then started my journey….

Kali girl age 3

This was Kali right before everything changed. I have yet to see her that smile like that again. Change is comin though!