I would like to share with you how I handle being a mom of an autistic child with special needs and have faith in a magnificent God.
“I give thanks to you that I was marvelously set apart.” – Psalm139:14 CEB (Common English Bible)
I just love that verse. It is from a different translation of the Bible. More common one is this,
“I praise you because I am fearfully and wonderfully made;” – Psalm 139:14 NIV (New International Version)
I always loved the verse and thought how amazing and magnificent our God is. In the chapter, it talks about how God knows us. He know’s everything about us.
He created us in our mother’s womb.
He is always with us.
When I wanted to write a blog I wanted a name that reflected how I felt about my son and others like him and families like ours. I felt this verse fit perfectly. God created my son the way he is on purpose. He created C the way he is. With his microdeletion, his ADHD and his Autism. And God created my family. He knew who I was going to marry and what children I was going to have.
Yes, it was difficult to get C’s diagnoses. First starting with speech delay, the microdeletion with unknown symptoms and characteristics, to ADHD and ultimately Autism. There are some days that are super difficult and I cry like a baby. I worry about my son’s future all the time!
But you know what? I never lose faith that God has it under control. And I have never been mad at Him for giving me this unique special boy.
I don’t remember if I ever asked: “Why?” Why did I get a child like this? Why did he have to be born with missing chromosome pieces? Why does he have autism? Why do I have to raise a child like this?
If I did it was probably only for a moment. I think it’s a normal human thing to ask a question like that.
These day’s I cannot imagine my life without C the way he is. He has changed my life, our life, in a way I didn’t know is possible. He changed me for the better. I am such a better person because of him. Every day he inspires me. How hard he has to work for everything. How much enthusiasm he has for life! So inspiring.
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My childhood, a hint of what’s to come?
As a young girl, I immigrated with my family from the former Soviet Union to the United States. I was 7 years old. Growing up in the United States but surrounded by the Eastern European culture I was not exposed to disabilities and families like the one I have now. I think it was partially because special children were hidden away and never discussed.
I even remember as a young woman thinking that these children were a punishment for their parent’s sins. I honestly don’t know and don’t remember where this idea came into my head.
I have to say I’m embarrassed for those thoughts, and I do not think this way AT ALL!
Never in a million years did I think I was going to have a special or different child.
I always had a heart for people who were different. I believed then and still do, that they deserved my attention and respect.
When I was in 6th grade we had a program where we got to tutor 3rd graders. I got the privilege to tutor a boy who was in special needs class. His name was Micheal. He was amazing and complex. I enjoyed tutoring him. I remember feeling so “cool” (I think that’s the work we used in the 90’s) that I was the one that got to work with Micheal. Now looking back I realize he most likely had autism.
When I told my friends that I started a blog about my special needs parenting journey, a friend reminded me of a conversation I had with her when I was about 17 years old.
I told her that families who have special needs children should feel blessed. Blessed because they are entrusted by God to be able to love and care for His creation. Since not every family can do that. God chooses special parents for those kids.
At that age, I had no idea what God was preparing me for!
Another moment in my life that I remember is a prayer I heard in church. Growing up I attended a Russian speaking church with a tradition to pray out loud (taking turns, one at a time). There was a woman in the church with many children. Most of the children have extraordinary gifts in music, art or both! But she also has a daughter with down syndrome. The prayer she prayed touched my heart and stayed with me.
She prayed a prayer of thanks to God that he gave her this amazing special girl to raise. And she asked for strength and guidance to love her, cherish her, and think of her as a gift from God and a privilege to raise her.
WOW! That prayer was so powerful and I think about it and pray a similar prayer for my son every day.
After the diagnosis
After C got his genetics test done and we got a microdeletion diagnosis I went through the stages of grief. I was sad and mad and at the end I accepted it. And I felt it all again with each new diagnosis.
I decided it doesn’t define who C is. I know him best. I decided to give him everything I could so he could feel good about himself and be the best he can be.
I have to say that having family support is so important. Especially from my husband. It means everything to me. To be honest I was afraid how he would react to our son’s diagnosis. My husband is in Law Enforcement. He’s a mans man. I was afraid he would think our son weak or not good enough. I know these are terrible thoughts but I know of families that this happened to.
I am glad that my husband reacted like the most amazing man and father ever! I have to say that he is even stronger than me and doesn’t see disability only ability. He treats our son like any other kid. And he is my biggest fan! He is such a blessing in my life. Best partner I can ever ask for in this journey.
I don’t know what the future holds. I pray each day for wisdom to raise my children. I pray for strength to get through the day ALL THE TIME! I go through everything that a regular parent does on a daily basis.
I feel that my job is to teach my children and give them every opportunity available to live their life to the fullest.