special needs mother speaks out on some challenges they faced
I had made a few mistakes when I was raising my children. One was staying with their father as long as I did. It was only 10 years, but it was a long 10 years with a roller coaster of events I will never forget. It was rocky from the beginning, and I can blame it on so many things, but it was me that walked down that aisle and said “I do” I don’t regret having my children. I love my children with all my heart and would do anything for them. I was a great mom. God told me one time, “You are a great mom but not a responsible mom- you are not teaching them to me, men and fathers. You are not teaching them responsibility. I will teach them responsibility”.
After my divorce, I just wanted to focus on my children and doing what they needed. I never made a lot of money, never had enough to save, and never regretted my decision to get divorced. It was hard, really hard at times. We went one year without a vehicle. That is a long time when you own home daycare. Somehow we made it. We always made it with the help of God. He was my strength.
Some say I went to Los Angeles to get away from my boys, but that is so wrong. God told me to go so he could raise my boys to be men. It was the hardest thing I ever did. I know God was not joking when he sent a prophet to my church to tell me he was changing my path today. Man! That day everything turned around. The house and daycare I was going to buy fell through, the apartment I was in was rented out, my job ended, and I had nowhere to go.
I was focused on what I needed to do. I had taken a few wrong paths but was not in a totally new direction. My son was devastated by the idea of me going to Los Angeles. This son would be my heartache for years to come.
Lets go back to the day he was placed in my arms- ohhh what a day!
I had been in labor for over 24 hrs. Hard labor in the hospital for over 12 hrs. Funny how when things like this happen records get lost. Well, it was not great but Glory to God he had me and my baby. I prayed all night while my baby was in distress. My husband was down the hall sleeping and my doctor went home. The night nurse was young and arrogant. By morning I had a 50% chance to live and my baby had 25%. My mother came and called my prayer warrior grandmother and within an hour my son was born. No doctor’s help and when he saw the baby coming out, he ran to catch him. He called the emergency team to have him air lifted to Saint Louis. None of that was needed as God had a plan and my son was breathing, moving, and doing fine.
He grew to be so cute and funny. He was happy and easy to be around after the first few months. His clavical was broken, he quite breathing because of a milk allergy, and he fell out of the carrier. His food was home made for 2 years. No milk or milk products for this kid.
He spoke early and walked early. He did not crawl which was a developmental stage missed and could indicate he had some type of learning disability. I knew that much but did not know what it all meant. He struggled with a few things- meltdowns but did so well with others-riding a bike early. He could not do math or read but understood everything. I would teach him math with his action figures, and he was on mark every time. School was hard at first and his father was worse. He was in a public and later in a Catholic school which was not working for him, so I changed schools. Well I changed states- we moved to Texas. By this time, I had made the sandpaper letters, I bought magnets for the fridge, and read everything to him with oral reports and spelling words. The schools were not as forgiving or helpful. Texas school picked up on it right away. Moving to Texas was my decision because of school issues. My sister-in-law said to come to Texas and try it out for a while to see if the schools were better. My boys had such unique needs and skills, but all had one thing in common. Above average I.Q.
The schools in Texas were amazed that my son did so well until they realized his overall (full scale IQ was over 135). He was dyslexic which accounted for the ability to do oral reports and spelling but not written. Now I was relieved, however, saddened, and full of guilt. I knew it had to be the delivery and the lack of oxygen. I do not know what other mothers do but I went to the library and checked out all the books on dyslexia and called the numbers in the phone book for school who specialized in this learning disability. I gathered all the information I could while waiting on the school to decide their course of action. I even went to a museum that had a display of special needs exhibits one being dyslexia.
Not completely understanding what this new thing was that plagued my son I stood in the exhibit for an hour just looking and thinking. Mostly wondering how I will teach him to be in our world and succeed. How will I advocate for him when I don’t understand the need or issue? I stood and cried for a while. The woman I was with tried to console me, but she did not know what to do. Her children did not have this problem and she had no clue what to tell me except trust God. I love God but that is not really the thing to tell a mother who is struggling with something like this. She needs concrete advice or no advice.
My baby boy was drowning, and I had no way to help him. His father refused to accept it. My son was developing anxiety and panic attacks. He would go into distress and run around yelling or screaming rubbing his face while pacing. I had not clue what to do and would yell “stop, breath, stop” and he would take a breath and stop. My way was not the best, but it was all I knew to do at the time.
I decided one summer to go to my hometown. I missed something but did not realized at the time it was a friend of mine. I spend the summer and let my boys play and have fun. I tried to relax but it was hard. I wanted to get back to my house and start my life. I just did not know how to do it. I spent time in prayer and talked to others. I was being manipulated on all sides. I finally went home at the end of the summer like I had planned. When I got home by husband has left us. He took all our things and trashed the house. He even had our utilities disconnected. He was planning on marrying someone else. My children struggled to understand, and I had no idea what to do. I moved my boys in with my brother and sister-in-law. I tried to sell Avon and got a job in a grocery store. I borrowed money from my father and put us in a house- without water because I did not have the money for a deposit due to the last deposit my husband took from the utilities. I went to work and went home with no hot water. I set up my boys in their room with the things we were able to salvage from the trash my husband left. My son had a large train set and we tried to save that for him.
I received a letter in the mail saying my husband was filing for a divorce. He was taking my car and my children. He wanted me to pay him child support. He was coming to pick them up on Friday. I was in shock. Devastated I did not know what to do. I felt like I made a dozen trips on that long highway from Missouri to Texas. I did not want to go back. I looked at my children sleeping and could not think of what their life would be with their father. My baby boy all dark hair and light eyes smiled at me and told me he loved me. He looked at me smiling and sat next to me in the chair. He was so precious to me. All my children are but he had a special need that if not taken care of would wound him for life. His father would destroy him, and I could not have it. I sat on the couch and prayed. I prayed for peace to do what I needed to do. I prayed for the way to do it. That night I knew I needed to make one more tip to Missouri. I did not sleep that night.
The boys got up the next morning and I asked them to pack what they wanted the most. We were going back to Missouri. I paced a cooler full of meat and told my brother to take the rest of the food. ( I had just gotten food stamps so I packed the house with food they loved). I had a courage I did not know I possessed. I went to my workplace and demanded my check for the work I put in. They gave it to me. I am not sure who was more surprised them or me? I drove to New Mexico and we took a walk to the mountain. We went up the mountain and me and my boy stood looking over the horizon and just stood there. I gathered up the boys and off we went.
I remember knowing in my heart this was the right thing to do. I don’t know when I lost so much weight or when I realized I was afraid of men, but I realized it when my brother said something to my mother. He asked if my husband hit me. I never spoke of it. Me and my boy went for a walk and talked about the divorce and living in this town. We talked about school and getting him into boy scouts and church. He laughed and said it would all be ok. I went to the school and discussed what my child needed. What his IEP in Texas included. I told them he needed special writing equipment if they had it and if not, I could get it for him. I explained he had to have his test orally and he could not have spelling on paper. We discussed all the things I knew and what I expected from them.
I went to the other boys’ teachers and did the same thing. I went to the church and put them in programs. I also put them in boy scouts. They were all set. I was ok to leave them with my family. I knew they would be ok. Now it was time for me to put me in the hospital to gain some weight and make a plan. I did just that.
Once I was out of the hospital- a 7 day stay I found a job and began our life. I got the divorce and did not have to let my children move back to Texas. We began a life which had its ups and down and was a roller coaster at times, but it was our life. During those first few years I had a challenge which was to send my boy to his father for a week or two. I did not want to and he did not want to go. We finally set the date and their grandmother met us and took them to their father in Texas. She promised she would stay for a day so they were settled. She also said she would pick them up and we would meet to exchange them. The visit was devastating for my boys. It was a trauma I could not take away. They were hungry, cold, and scared. I was not allowed to speak with them when I called so I had no idea what was going on. They were in a car fire, given machetes to work in the field with, and left to sleep on the floor. They were 7 and 8. When I picked them up their grandmother said; “never send them back”. I never did. It was a fight but one I was willing to fight. My boy would not leave my side for weeks. He cried in his sleep for months. He lost what we had gained over the last year. We knew what to do this time, so we were not defeated.
My son learned to handle his disability and succeed. He learned tips and tricks to help with focus, memory, and recall. He was able to participate in sports and did great in school. He was a good kid who any parent would be proud of. He struggled with resentment and anger as a teen. When I had the opportunity to move to Oklahoma for school and complete my Christian counseling degree, I had to stake a step back and think of him again. What would be great for one of my children would be horrible for two. This one would never had made it try to start over again. At this time, he was doing well, really well. No anxiety attacks, no panic attacks, no fear of hunger or failure. He was doing well. He gained weight and made friends who were true friends to him. He was building things like a doghouse and he was managing his disability. I just could not give that all up and expect him to start again.
He made some bad choices for a while and it almost cost him his leg, but he moved passed it. We moved past it. He was not able to handle college the first time he went but when he was ready, he completed a double degree.
Making hard decision for your children is tough. It is so frightening and all-consuming you can’t breathe sometimes just thinking about what to do. If you find a peace- my peace and true north is always God. Jesus is my peace and long walks, quiet nights, and love will always guide me. Was it hard to do what I needed to do for my children? Absolutely! This one loved water and when he was 3 would take off to the swimming pool in the complex we lived. We had to move so he was safe. No amount of bolting doors worked this one was smart and would break out. His fears started as a toddler which made some things a little more difficult- bottle breaking, potty training, and visits. For all the struggles the joy was so much reward. He was sicker than most and when they all caught chicken pox, he had it so bad it was inside his mouth and he would shake due to the itching. He cried and I cried. One time he took an iron while I was outside, and his brother ironed his arm. Needless to say, that iron was in the trash. He was ran over by a 4-wheeler trying to save his brother who was on the 4 wheeler. He had so many bumps and bruises and was always on the wrong side, but he got it figured out. It was hard to put what I wanted aside to do what they needed. And knowing he needed extra help meant to put aside extra energy, prayers, and focus.
A child who has special needs takes a special kind of parent. It takes someone who can see past the need to the child struggling within. Taking the time to reach way down past the trauma, past the defenses, past the fear, past the abandonment and build a lasting relationship of trust. Our trust was shaken when he was a young adult. He was asked to move with me because of his brothers and issues they were dealing with- defiance and drugs. I had an opportunity to live and work in a residential facility. He was going to come with me. He was close to graduating and we were going to live in this place while he chooses his path for his immediate future. When the time came, he was so angry he refused to go. He refused to move with me. He refused to talk to me. It came time for him to move on and we patched things up. He was angry but began to make adult decisions and choices. He had a strong circle of friends whom he spent time with.
As much as I offered for him to live with me, he refused. That may have been God because he was 18 and graduated from high school. He was making his own path. When an opportunity opened for me to go to California, he closed the door on me for years. He finally came around but still keeps me at arm’s length. He was my hard child, my special child, my sorrow, and my joy. Only God knows his heart and knows when he will remember the times, we had the sacrifices we made, and the challenges we faced to make him the man he is. God knows all things, he is perfect in all things, and he has a timing for all things. My son knows in his heart who his mother is and what she did. He knows he would not have made it without her fight and tenacity. He knows her love for God and her obedience. They stood on a few mountain tops and talked about life and love. They discussed her love for her children, God, and country. They discussed plans for the future and plans for life. They stood on a few mountain tops and cried, laughed, and sighed. His fear of losing her out weighted his love for God’s plan.
During my years following God I spent many nights crying for this boy of mine. Loving him and wanting him to be a part of my journey with God. One day my heart sang when he sent me his dean’s list letter! Oh, the triumph that shown! The overcomer he was poured through. He made it! We did it, and the fight was so worth it. The battle was won even if a few casualties were lost. When he married and he honored me I could only sit and cry. God has a plan and when we follow it, we find ourselves looking back and saying wow! Are we perfect? Is the hurt, fear, and feelings of abonnement gone? I would say no. But again, the battle is the Lords and I just have to be available for my boy with the brown hair and light eyes.