Wednesday, April 3, 2013
(Aleks & her BF Ellie - with the ears & nose! )
One child, one family suffering through autism is one too many. April is autism awareness month and Tuesday, April 2nd was the official Autism Awareness Day. The month of March was a frustrating month for many families dealing with a child or loved one with ASD. We heard for the first time in March that 1 out of 50 children currently are on the autism spectrum. We heard that ‘there is no relation between vaccines and autism’. It was VERY frustrating as a parent of a child that suffered regressive autism after a series of vaccines.
I would have a lot more respect for these so called researchers if they said that for some children the current vaccine schedule and the chemicals in vaccines are fine, but for some it may not be. Try this, if a doctor tells you that there is no correlation between vaccines and autism ask them to put it in writing. Ask that doctor or nurse to write you a promise on their letterhead and sign and date it. Trust me it won’t happen. I know this because after a healthy debate with a couple of doctors I said this to them. Let me just say that was the end of the discussion.
I can’t say that for every child vaccines equal autism. That’s not accurate and not at all what the numbers say. What is also impossible to say is that every child is healthy enough to handle the current vaccines and vaccination schedule. I’ve said this before and let me reiterate it; I am not anti-vaccine. I am against the current schedule and all the crud that is put into these shots. I also believe in this analogy; genetics loads the gun, the environment pulls the trigger. That is why some children can have the 30+ vaccines and never suffer and why some children don’t get past the MMR like my daughter.
Tuesday, November 27, 2012
It is easy to see what is wrong with the world, but today I chose to focus on the joy and blessings. There was a time when all I felt was angry and sadness over Aleks’ diagnosis. I admit too that I recently felt that anger while watching my daughter struggle to find friends and fit in here in TN. My heartache though has seen great moments of joy recently and I want to share them with you as a reminder that there is always hope.
One of the girls that my daughter has gotten to know from Girl Scouts has become a true friend. This little girl is kind, loving and accepting of Aleks. The other week when we had ‘flag duty’ at Aleks’ school, this little girl and her sister showed up to help. It was incredibly cold that morning and very windy since Hurricane Sandy had hit the East Coast the day before. Aleks and I were standing outside at the flag pole when this little girl and her family pulled up in their car. The girl rolled down her window, yelled for Aleks and said please come and stay warm with us in the car. Amazing act of kindness and love! A simple gesture not only changed my daughter’s day, but changed mine as well.
Today I am thankful for Aleks new friend. I am thankful that Aleks can speak her mind, laugh with her friends and go to school every day. I have a lot to be thankful for and I want to make sure and celebrate that. Life after our move to TN hasn’t been easy, but God is providing and healing.
Tuesday, October 2, 2012
Extending grace when life is good is easy…it’s the bad days that get me. Recently I’ve been really struggling with adults and children being unkind to my daughter Aleks. I have a knot in my stomach even as I’m writing this because I’m angry. I’m angry that adults have no tolerance for different and that children whisper about my little girl. I’m also struggling with the area we live in and how different it is from where we lived in MN. My grace tank seems to be running on ‘E’ and I’m trying my best to let God fill it up.
Having a child with Asperger’s Syndrome (autism spectrum) means having a child with some quirks. As her mother, I love that she has these quirks and isn’t concerned about always fitting in. As her mother I also struggle watching other kids whisper about her and parents judge her because of her quirks. My grace tank reached ‘E’ the other day, when at a Brownie event I saw all the other girls pick a buddy for a fieldtrip and her be left out. I watched as the Brownie leaders decided to assign buddies and still the other girls rejected her. Okay, now I’m angry and sad again!
I keep telling myself that none of us deserves grace and that I have to give it over to God to fill me up. I keep telling myself that it will be okay, but my heart hurts and I just want to hurt someone else for hurting my girl. At seven she doesn’t always see the rejection that I see. She gets angry that she isn’t picked but she doesn’t understand why. I get it and yet I don’t understand. Do mean girls really start at 7? Why are girls here more judgmental and mean when almost all the girls in MN were kind and accepting. Is this a geographical difference in kids or a socio-economic difference in the community we’re in? I’m not sure, but I don’t like it – not one little bit.
So now you see why my grace tank is on empty. I am tired of having to show grace to mean people. I am tired of trying to make my daughter fit in with girls who don’t like her because she is different. I’m tired of the gossiping of adults and the ostracizing of little girls. I’m tired and my grace tank is on fumes.
Friday, March 30, 2012
The CDC released new numbers on autism this week. Not surprising, they now acknowledge what so many of us as parents of ASD children already knew. The numbers are staggering; not just 1 in 88, but also 1 in 54 boys. The government has tried to downplay the severity of this epidemic and actually are refusing to call it an epidemic. What? We have heard the excuses that it couldn't be vaccines, environmental toxins or anything like that. It must just be better diagnosing according to the government. Right....we went from 1 in 10,000 in the 1960s to 1 in 88/1 in 54 boys - because our doctors are better?
My daughter was born healthy. She was developing at normal rates until she received a certain set of vaccines. After that, everything changed. She lost language, eye contact and her appetite completely changed. We(my husband and I) believe that there is a genetic component and an environmental one. Just as not all people can have penicillin, not all children should have the toxins and the load of vaccines that are currently part of the schedule. How can one size fits all be good for any person, let alone a child? After much research, we believe that an overload of toxins coupled with an auto-immune disease is what triggered our daughter's autism.
That being said, our daughter didn't fit the normal autistic definition. She was a happy, smiling baby even after we noticed changes. Here are some signs that we noticed, that we have found is common in some children with autism. I share them not to scare anyone, but to offer that the face of autism is changing.
Possible early symptoms of autism:
Covering ears when noise levels are too loud
Lack of eye contact - especially with strangers
Stomach/bowel issues (leaky gut syndrome)
Tactile (extremely sensitive to textures/fabrics both good and bad)
Very limited in what foods they like
Repeating what you say to them instead of answering the question
No fear of dangerous situations
Walking on their tip toes
I hope that this helps you. If you have a child that you suspect is on the spectrum, don't wait to get help. Children can recover and get better. After spending 5 days a week in therapies at Children's Hosp. in MN, going to see our DAN! doctor and completely changing her diet she is now defined as Aspergers vs. regressive autism.
Healing can happen...autism isn't a death sentence although it feels like it the first time you hear the words connected to your child.
Faith, Hope & Healing-
Tuesday, January 10, 2012
We are now here and living in Nashville, TN! We were fortunate enough to sell our home in MN and buy a home close to a wonderful school for Aleks. My hope was that when it came time to update this blog that life would be settled down and Aleks would be well adjusted and happy. Well...have you ever heard the saying, 'Want to make God laugh?...Then tell him your plans.'
I think that I had forgotten that saying until just now. This move and our adjustment remind me that life happens in God's timing and his schedule.
What this move has taught me is that for a child with autism, a major move is more difficult than any of us (especially me) ever counted on. I thought I understood how difficult a new school and leaving her friends would be. What I didn't realize is that for her, the friendships were her family. For Aleks the friendships she had were vital to her stability and happiness. She had cultivated these friendships for the past several years in MN and leaving them left a hole in her heart. She talks about her friends all the time and she misses them every day. A lot of autistic children have trouble connecting and make true friendships. A lot...but not all autistic children. I remember her teacher in MN telling me that Aleks has real friendships and to make sure her new teacher knows this. She had read the opposite and wanted me to know that Aleks opened her eyes about this subject.
My hope and prayer for her is that she makes those same kinds of friendships here. I worry that the move was too much on her. I worry that I somehow failed her by making her leave all that she knew. I am scared that it is taking so long for her to make friends and feel connected. I'm scared of her acting up in class because she is nervous. I don't share these fears with many people because there is part of me that feels like by saying them out loud they'll be more real. The problem is that my fears have kept me silent and I've promised to share the good and bad in this blog. As always I hope that by sharing the truth of what we're going through it will help all of us grow and learn.
Blessings xo Melissa
Saturday, September 17, 2011
Whenever I look at this picture, it makes me happy and sad all at the same time. Why? Well, because this picture is everything we've loved about living in Minnesota and what will make it so hard to say good-bye as we move and leave for TN. We had to tell Aleks recently that we're moving and leaving behind her friends, which really are our family, to go someplace unknown.
It is with great sadness and joy that we are leaving. We're sad to leave behind our friends and we're filled with joy at what God has ahead for us as a family in Nashville.
Telling an autistic child that a major change is ahead was scary for us and for her. We weren't sure how she would handle it and whether she would totally grasp the changes ahead. The good news is that she got it, she totally understood that TN would mean leaving MN and moving away. The sad news is that since she got it, she has told us she doesn't want to leave. Besides the reasoning of leaving friends and her school, she said that she doesn't want to leave because, "Mommy, Minnesota has all of my favorite letters in it....M...N..."! She also said that we have to tell our real estate that we want a new house, but in MN, not TN! Pretty funny stuff. She is getting better about moving. What I've learned is that she does understand more then I give her credit for and that she really needs this extra time to process and deal with the move.
As we're preparing for the move, it also means finding the right school and teacher. That for me is the scariest part and hardest part. I know that we really get one shot at moving and getting the right school. We can't ask her to keep making changes so we need to move from MN into her 'forever' home in TN. We also need to make sure that the school is right and can provide for her. She will need the stability of having a home and school that won't be changing anytime soon. For that reason, I ask for your prayers in selling our home quickly so that we can give that to her. BTW, I will continue our blog in TN.