Prairie Wife of the Week April 11, 2014 (child with special needs)

Posted April 11, 2014 by TallGirlJ - 10 comments

I got the honor of being Prairie Wife of the Week last week and afterwards, Prairie Wife asked me to interview my mom. She felt that it would make a great addition to my story. I am completely honored that that I got the chance to learn about my Mom’s story. This interview shows a mother and father’s true love and determination to get the best for their child. I hope and believe this can help many people whom have a special needs child, or that just need a reminder that life can throw you curve balls. My Mom shows us (in true Prairie Wife style) that with determination, perseverance, and love you can turn life’s tragedies into something beautiful.

TallGirlJ (TGJ): First tell us a little about yourself and your family.

 COWGIRLONGREEN (CGOG): I grew up in a small town in Iowa. I started dating my husband in October of 1972. We were high school sweet hearts and we were married in October 1974 just after I graduated high school. We moved to Wyoming in March of 1975. Our families weren’t happy we were leaving, but we had to go where there was work and that was in Glenrock, WY. The oil field was at the beginning of the big oil boom of the 70’s.

I’m a mother of 2 great adult kids and two of the most special grand babies anyone could ask for and I also have a great son-in-law! My wonderful hubby and I will celebrate our 40th anniversary in October. I think moving 700 miles away from all our family and friends made our marriage stronger, all we had for the first 2 years was each other. I now work at a grade school as a Para Professional in special education. I love the kids and my job! We own an oilfield company that my husband runs. I love my horses and we raise a few cows, we never have trouble staying busy!

 TGJ: Up until the time Michael got sick was he healthy and meeting milestones?

CGOG: I got pregnant in 1976, I had a normal pregnancy and loved being pregnant! I had normal delivery and Michael was a healthy little boy. He was meeting all his milestones, in fact he was walking at 9 months. He did have a few ear infections which weren’t surprising as they kind of run in my genes, and he was of course teething.

TGJ: Tell us Michael’s story.

CGOG: It was Friday January 13, 1978, Michael had been crying a lot and he had spiked a fever, it was over 102. I don’t remember who we called but we were getting him dressed to take him to see a Dr. 30 miles away in Douglas WY. It was at night and really cold so we bundled him up in his snow suit, when I picked him up he went into a seizure. We didn’t know what to do; I thought he was going to die right there! I had never seen anyone have a seizure before it was horrifying. While I tried to revive Michael, my husband called 911. Since we lived outside of town (in what we called the little house on the prairie) we drove to town with him and meet the ambulance at the police station.  I was allowed to ride in the front of the ambulance and Mike followed. Turns out I probably caused the first seizure, bundling him up like I did. I of course had no idea it would cause his temperature to rise even higher, and resulted in a fever induced seizure. The Dr. we saw said he had a bad ear infection and was teething, so he started him on penicillin and admitted us. Two days later on Sunday we were sent home. By Tuesday he wasn’t any better, he had started vomiting and had diarrhea, and his fever would not stay down. So, we were admitted back to the hospital. Michael was not showing any signs of improvement, in fact he was getting worse! He had developed hives along with everything else. After 2 more days in the hospital and no signs of improvement, an incident occurred that probably saved his life.

A nurse came into our room, it was just me and Michael at the time, she closed the door and said “If you want to save your baby you need to get him out of here”, then simply left. I don’t know who she was I never got to thank her! I called my husband and told him what had happened and that we were taking Michael to the Casper Hospital. Mike came and picked us up and we drove to Casper after being refused an ambulance. In Casper we were met by a young Dr. Horan, (who aged a lot over the next 6 weeks). He took one look at Michael and was sure he had meningitis. They did a spinal on him but, because of the medications he was put on in Douglas the test came back inconclusive. Since the test was inconclusive they couldn’t begin treatment for meningitis. Instead, they had to stop all medications he was on. They tested him for Giardia, because we’d been in Iowa at Christmas time drinking well water, and the test came back negative. They poked and prodded him; and all the while he was getting worse! Within 24 hrs they did a second spinal and he tested positive to meningitis.They called it Cerebral Meningitis, which meant he wasn’t contagious.

At this point he was having lots and lots of grand mal seizures and they were coming nonstop. The doctors couldn’t keep his fever down so they had to place him in a medical induced coma. He was in the coma for 7 days. (I didn’t know until later that the Doctors had told my husband his odds of surviving were very low at one point 20/80). Because of the hives they thought he was allergic to Penicillin the drug of choice for meningitis and they were afraid to give it to him in the IV. The alternate drug they had to use was very hard on his veins. An IV would only last about 2 to 3 days and he would blow that vein. The poor kid was like a pin cushion. Our last chance to end the infection was to put tubes in his ears and remove all the fluid. This was a risky procedure because he wasn’t healthy and was so weak, but it was our only hope. They did the surgery and released a lot of fluid, and Michael immediately started improving. His condition continued to improve, and we finally got to come home March 15^th 3 days before Michael’s 1^st birthday.

They say total recovery time for Meningitis is two years; although what he had was Cerebral Meningitis and his prognosis was good. Looking back we should have known that something just still wasn’t right but, he had been in a coma for a week and we were just so thankful he was alive!

Michael started have seizures again in May. We went in and did a CT scan (the CT scan was new to the hospital then and it was a big ordeal to get one done). We found out that there was a blood clot (he had most likely had a stroke at some point) that had formed on his brain causing the brain to atrophy; this is what caused the seizures to start up again. Michael did learn to walk again after all his time in the hospital, though he kept his right hand behind his back and started using is left side more. The seizures got worse and we could not get them under control! We took him to Denver Children’s Hospital for evaluation when he was 4. Truthfully I think that experience was probably worse than when he was sick. They set us in a little room and told us that he was low functioning, using the word “retarded”, and told us we needed to put him in an institution and forget about him. I sat there crying and they had the nerve to ask me why I was crying!? We never went back there and I am happy to say we never took their advice (they wrote in our file we were immature and in denial).

TGJ: Tell us what it was like to raise a child with special needs?

 CGOG: I felt alone a lot. I had a son that was so hard to care for. He was active all the time, and he had a hard time understanding so there was no reasoning about his behavior with him. I didn’t sleep much back then.  You couldn’t turn your back on him or he was into something or gone! He wore a helmet for years because of the seizures. I didn’t get to go and do girl friend things like most because sitters for a little boy with his special needs were hard to come by. I had one true friend who didn’t move here till a couple of years before TallGirlJ was born. My husband and I didn’t do much if we couldn’t include Michael. It was okay though, he was our son and God had chosen us to take care of him!

TGJ: What kind of emotions did you go through within yourself and your marriage after Michael got sick?

CGOG: I blamed myself.  I remember feeling that my husband was blaming me. He never did say those words, but my grief made me insecure of myself! We were the lucky ones though; we grew closer instead of separating after our tragedy.  My husband and I went to grief counseling at one point. Losing the health of our son brought out the same emotions as if we had lost him all together.  So we had to work through the grieving process.

 TGJ:  You guys chose to put Michael in public school, was this the norm? Was there a good system in place?

CGOG: When Michael was ready to start school there was no program for someone with special needs in Glenrock.  The only option at that time was at Woods, a school 30 miles away in Casper. I went and visited Woods. Special eduction was different back then form what it is today. that was when they put all special needs students in one school, they didn’t want them out in the public or around other students. Thank goodness we mainstream all of our students now, I truly believe it is a good choice for everyone.
I went to the Glenrock school district and told them that Woods would not work. I wanted Michael in school in Glenrock. He was the first special needs student to start school here. They had another student that they were funding and sending to Casper at the time. His classroom was in the school board office but, I was okay with it. He was being mainstreamed (this means that he spent as much time as possible in the regular classroom environment) and in school.  Michael has always been the pioneer student for Glenrock. He was the first special needs student to be mainstreamed. Maybe we missed some important things he could have had at another school but, we did our best!

TGJ: Is there in anything you would do different in helping Michael?

CGOG: I should have kept him in early education classes. I pulled him out because I felt the teachers were frustrated with him. The school wanted to teach Michael sign language and I fought them on that. I always believed he would talk and I was afraid that if he learned sign language he would never try to talk. We did use pictures that allowed him to point and communicate the things he needed or wanted. We had a picture board at home and one at school. It really seemed to help with his frustration (and mine) over not being able to let me know what he wanted!
I do wish they would have had the programs they have now back then. Michael has always wanted to learn to read. Now he can read some sight words and write his numbers and letters. However, back when he was in school they concentrated more on life skills than reading and writing. Knowing what I know now, and the resources available now. If I could do it over I would push for more academics!

TGJ: 7 years after Michael was born you had ME; were there any fears in your mind about me getting sick?

CGOG: I was scared to death! I did worry about you getting sick but Dr. Horan had been through so much with Michael, he always made me feel confident that you were okay. You were the only child back then that got your meningitis shot at the age of 9 months though! I don’t think I obsessed with it like I see you do sometimes. I knew God would only give me what I could handle, and he had given us you for a reason!

TGJ: What kind of improvements did you notice in Michael after I came along?

CGOG: Michael adored you!  I can still see him carrying you by one arm like a rag doll down the hall, and your dad trying to get to him before he dropped you (you slept through the whole thing). He always wanted you with us and he learned so much from you. That was about the time we started to feel like he was making himself have seizures. Of course the neurologist thought I was nuts, but Dr. Horan  believed me. We decided that when I thought he was going to the have a seizure I would get his attention, and try to get him doing something else. When I began doing this the seizures wouldn’t happen!

He started talking when you did, before that he had very few words. He had rode his bike for several years with one training wheel, when you took yours off we caught him trying to take his off! We helped him remove it and he mastered it!  He got to do 4H when you started. He learned to ride a horse when you did. When you started driving we got him a 4wheeler to drive around! When he finished high school neither him nor I was ready for him to move out. But, when you got your first apartment and moved out that is when he started talking about moving out. The talk about getting married didn’t start till you got married… You are his hero!

TGJ: What are some special memories about Michael growing up?

CGOG:I could blow this page up with stories of the naughty things he did! He is so strong I always say he could tear up an anvil! He has a memory like an elephant, and he is also very literal!
To hit on a few, he drained his water bed and flooded my house. He put the garden hose in the dryer vent on the outside of the house and flooded the dryer. He loved to flush thing down the toilet, boy was I a pro at pulling a stool!
With Michael he doesn’t know when to “shut his screen door.” By that I mean this…We all have a screen door in the front of our brain, when we are told to do something, or that we can hurt ourselves, or whatever, we know when to shut the screen door and stop. With Michael that screen door doesn’t close as quickly, so if you give him a task to do, you better be there when he’s done or he’s going to continue on, which usually ends up in a disaster!

Example: he was working at a local restaurant here in Glenrock, the cook loved him and watched over him. He always there to help shut that screen door. Until the day he put him painting the back hall. When Michael got done painting the hall his screen didn’t close. As soon as I pulled up I knew what had happened, because Michael had continued to paint out the door and right down the side of the building! All I could do was smile.

When his Grandpa borrowed Michael’s  wagon that  he pulled  behind  his 4 wheeler  he asked me when he would get it back. I told him he’d probably not get it back till Grandpa passed away. He thought about it for a minute and asked “How old is Grandpa?” So literal lol!

TGJ: Are there any negative experiences that stand out in your mind?

CGOG: Not really, I think we were able to give him a pretty “normal” life. We never treated him any different. He had his own horse; he did 4H and sold his swine every year. He had a great bunch of friends from school. He even had a girlfriend and got to go to prom. He was the water boy for football team. Everyone loves Michael!

TGJ: Is there anything you wish people would or wouldn’t say when asking you about Michael or talking with him?

CGOG: Most people have been great. I do know that he can make people feel uncomfortable at times, especially if you’re a pretty girl or women! With girls he is a 17 year old boy trapped in a 37 year old man’s body! I wish if he was making them feel uncomfortable they would just say “Give me space Michael.” It wouldn’t make him feel bad.

TGJ: What kind of advice would you give to someone with a special needs child?

CGOG: If I could do a do over with him, I wouldn’t of tried to do it all myself. There are so many resources out there. I would of stood my ground and said “No” more and “He needs more” and made the school and doctors help us, instead of trying to do it all by ourselves. Let people help you! I would have continued with the early childhood development classes, the earlier the intervention the greater the outcome.  I see that life skills are pushed a lot once they move on to 5th grade. I would encourage any parent today, say “NO” the child needs to continue with his/her education first and then life skills second. We sat in an IEP meeting once and had the director  try to tell us that after 16 their learning is done. I remember my husband asking her why she went to college then? She didn’t like us much after that…

TGJ: Tell us where Michael is now.

CGOG: Michael is a very strong young man, with more friends than I will ever have! He always has a smile and a hello and a hug ready. He lives in a group home in Casper with full time care. He has a part time job and has just started riding the CATC bus to and from work. He still has speech weekly and he will always need help in caring for himself. He loves to travel, to go out to eat, and holidays which always means family time! He loves his cell phone and calling us every night. He has done so much more than those doctors in Denver said he would.

TGJ: Any last Prairie Wife words of wisdom?
CGOG: I can’t say I wouldn’t change anything, if I could go back, I defiantly would! I would have gotten a second opinion much earlier when he was sick and I would have pushed for more education.
But that being said, I love my little family. Sure Michale is missing out on having a family of his own, and we are missing out on some more grand babies but God gave us this path. Not everyone is as lucky as we are to have a son who at 37 still makes Christmas and Easter and for that fact every holiday as special as Michael does! I remember a friend telling once how lucky I was “because I will always have my little boy“.

Categories: Prairie Wife of the Week

Tags: , children with special needs, family, love, mother's of children with special needs, motherhood, Special Needs