What I would tell my 25 year old self about having a child with a disability
I had two sons when I was 25. Yes, you read that right. No, they were not twins. Tyler was born at 24/25 weeks gestation, weighing 1 lb. 5 1/4 oz. Logan was born 8 1/2 months later at 31 weeks gestation, weighing a whopping 2 lbs. 10 oz. I was pregnant for 13 out of 14 months. Neat trick.
Tyler had a Grade IV Intraventricular hemorrhage. So, we knew that IF he survived (he was given less than a 20% chance of survival) he could have significant issues. Logan was small but mighty. He went through typical preemie ups and downs, but after Tyler's 100 days of near death experiences, Logan's 45 day trip through NICU was a delight.
Then, I had two babies at home. Tyler was on oxygen, an apnea monitor, meds in his bottles. For a while I had to run a tube down his nose into his stomach to give him formula since he couldn't take in enough by bottle. We did 5 days a week of various therapies. Doctor's appointments, home visits, therapists, technicians for the equipment ... I felt like our home needed a revolving door.
When you are an involved parent, and you have a child (or children) with disabilities, it's easy to get wrapped up in the care of the child, the therapies aspects, and lose touch with the fact that you're a parent, and this is your kid.
With the hindsight of 21+ years from when Tyler was born, I wish I could tell my younger self a few things.
1. It's okay to take time off to be a parent. Every play session doesn't need to be about therapies. It's okay to just play ... and laugh.
2. It's okay to miss a session or two. Sometimes I was just pure bone exhausted and would skip a session. Then I would feel guilty, thinking I was doing my child harm. Seriously, missing that one session did not prevent my child from walking any sooner; and the mental and physical health benefits that taking a break did for me was well worth it. It would have been better if I had released the guilt.
3. It's okay to speak up. People said rude things to me at different times when my son was having some of his "autistic moments". People (women, always women) said nasty things. I wish I had spoken back more.
4. It's okay to be mad. This isn't what we signed up for. When I was pregnant, I pictured the Gerber baby. Instead I got this 1 lb. 5 oz. tiny little bundle that I couldn't even hold. He looked like a little old man. His eyes were fused shut. I didn't picture 5 days a week of therapies, or lugging around an apnea monitor and oxygen tank that weighed more than my child. I begged and pleaded with God to let my children live. Then I thought how dare I complain about what I got. You know, it's okay to release those emotions though. I figure God understands. I remember one particularly loud discussion I had with God. I yelled at the top of my voice. I felt better; I wasn't struck by lightning, and I was able to carry on with less stress.
5. The experts do NOT know best. I was told Tyler would never walk, would go blind, wouldn't be able to hold down a job, would never toilet train, would be severely mentally challenged, would never have friends .... the list goes on and on. Thankfully I am stubborn enough that I moved forward anyway, but their words echoed in my ears, and in the dark places in my heart. PFFFFT. They didn't have a clue.
6. Don't let labels change your view of your child. It's easy to see our child through labeled lenses. "Autistic, Developmentally Delayed, Handicapped, Retarded, blah, blah, blah, blah". The parent of a typically developing child doesn't look at their child with all these labels in their mind. They see the bubbly, sweet child in front of them. Yes, there are hurdles, but they don't define who your child is. If a meeting started off talking about Tyler's "deficits", I would interrupt and say lets talk about all the wonderful things about Tyler first. The "professionals" would stop, look at each other, and then would launch into their "Tylerism" stories, and how fun he was to work with, and how funny he was, etc. It would change the whole tone of the meeting. We are NOT defined by our labels.
7. Don't let others predict your child's future. One high school teacher told Tyler he "is not college material". This was the woman that ran the autism program in his high school. I was livid. How dare she. Tyler graduated, attended a residential trade school for individuals with learning challenges and has since started his own, successful, business. Take that Ms. Know-It-All Teacher! Pfffft.
8. Be aware of the attitudes of those you hang with. Some parents get caught up in the drama of having a child with a disability. It becomes their identity. It's all they want to talk about. It becomes their whole life. We never approached it that way. While we had these issues, we never made our lives revolve around them. We had another son in the home to love and take care of. He was equally important. I was not about to give autism, or anything else, the highest importance in our home. Family was #1 in our home. Autism was just something we had to deal with; like high blood pressure, or a headache. It's a matter of perspective.
9. Did I say it's okay to be mad and grieve? Yes, I did. I'm saying it again. You didn't plan for this in your life. Release the emotions if you need to. Don't let them rule you, or take away your joy. I wish I had released more.
10. Write things down. I'm not good at keeping a journal. I wish I had. The triumphs are so much sweeter when they've been fiercely fought for. All parents rejoice when their child takes their first steps. However, it's even more sweet when that child is 5 and takes their first solo steps.
11. Plan. There are just some things we have to think differently about than other people. Plan for the future, plan for catastrophes, plan, plan, plan. And, then you'll come to something you forgot to plan for. That's okay too. The other day Mark and I were out looking at a house and a big storm blew through. We pulled in the driveway and I looked at Mark and said, "Thank heaven the power is on. We've never practiced with Tyler what he would do if the power went out and he was home alone." Tyler does NOT take it well when the power goes out. So, now we will plan and practice with Tyler what to do when the power goes out.
12. Forgive yourself. It's okay if you mess up, handle something wrong, have a meltdown. We're all human. Don't carry regret on your shoulders. There is enough there already. Let it go.
13. Take care of yourself. I didn't do this well. It's oh so easy to give your all to everything and everyone else and forget to take time for yourself. You will have more to give if you take time to re-energize your own batteries. Your heart and soul need the break too.
14. Protect your relationship. Don't forget to take time for the person you love. There is strength in numbers, and having a backup is so much help. I cherish the support Mark gives me.
15. Rejoice. I LOVE who my son is. I love his outlook on life. I think we should be more like him. I love his sense of humor. I love his positive attitude. I am forever thankful that God gave him to me. I wouldn't trade the last 21 years for anything.
1. It's okay to take time off to be a parent. Every play session doesn't need to be about therapies. It's okay to just play ... and laugh.
2. It's okay to miss a session or two. Sometimes I was just pure bone exhausted and would skip a session. Then I would feel guilty, thinking I was doing my child harm. Seriously, missing that one session did not prevent my child from walking any sooner; and the mental and physical health benefits that taking a break did for me was well worth it. It would have been better if I had released the guilt.
3. It's okay to speak up. People said rude things to me at different times when my son was having some of his "autistic moments". People (women, always women) said nasty things. I wish I had spoken back more.
4. It's okay to be mad. This isn't what we signed up for. When I was pregnant, I pictured the Gerber baby. Instead I got this 1 lb. 5 oz. tiny little bundle that I couldn't even hold. He looked like a little old man. His eyes were fused shut. I didn't picture 5 days a week of therapies, or lugging around an apnea monitor and oxygen tank that weighed more than my child. I begged and pleaded with God to let my children live. Then I thought how dare I complain about what I got. You know, it's okay to release those emotions though. I figure God understands. I remember one particularly loud discussion I had with God. I yelled at the top of my voice. I felt better; I wasn't struck by lightning, and I was able to carry on with less stress.
5. The experts do NOT know best. I was told Tyler would never walk, would go blind, wouldn't be able to hold down a job, would never toilet train, would be severely mentally challenged, would never have friends .... the list goes on and on. Thankfully I am stubborn enough that I moved forward anyway, but their words echoed in my ears, and in the dark places in my heart. PFFFFT. They didn't have a clue.
6. Don't let labels change your view of your child. It's easy to see our child through labeled lenses. "Autistic, Developmentally Delayed, Handicapped, Retarded, blah, blah, blah, blah". The parent of a typically developing child doesn't look at their child with all these labels in their mind. They see the bubbly, sweet child in front of them. Yes, there are hurdles, but they don't define who your child is. If a meeting started off talking about Tyler's "deficits", I would interrupt and say lets talk about all the wonderful things about Tyler first. The "professionals" would stop, look at each other, and then would launch into their "Tylerism" stories, and how fun he was to work with, and how funny he was, etc. It would change the whole tone of the meeting. We are NOT defined by our labels.
7. Don't let others predict your child's future. One high school teacher told Tyler he "is not college material". This was the woman that ran the autism program in his high school. I was livid. How dare she. Tyler graduated, attended a residential trade school for individuals with learning challenges and has since started his own, successful, business. Take that Ms. Know-It-All Teacher! Pfffft.
8. Be aware of the attitudes of those you hang with. Some parents get caught up in the drama of having a child with a disability. It becomes their identity. It's all they want to talk about. It becomes their whole life. We never approached it that way. While we had these issues, we never made our lives revolve around them. We had another son in the home to love and take care of. He was equally important. I was not about to give autism, or anything else, the highest importance in our home. Family was #1 in our home. Autism was just something we had to deal with; like high blood pressure, or a headache. It's a matter of perspective.
9. Did I say it's okay to be mad and grieve? Yes, I did. I'm saying it again. You didn't plan for this in your life. Release the emotions if you need to. Don't let them rule you, or take away your joy. I wish I had released more.
10. Write things down. I'm not good at keeping a journal. I wish I had. The triumphs are so much sweeter when they've been fiercely fought for. All parents rejoice when their child takes their first steps. However, it's even more sweet when that child is 5 and takes their first solo steps.
11. Plan. There are just some things we have to think differently about than other people. Plan for the future, plan for catastrophes, plan, plan, plan. And, then you'll come to something you forgot to plan for. That's okay too. The other day Mark and I were out looking at a house and a big storm blew through. We pulled in the driveway and I looked at Mark and said, "Thank heaven the power is on. We've never practiced with Tyler what he would do if the power went out and he was home alone." Tyler does NOT take it well when the power goes out. So, now we will plan and practice with Tyler what to do when the power goes out.
12. Forgive yourself. It's okay if you mess up, handle something wrong, have a meltdown. We're all human. Don't carry regret on your shoulders. There is enough there already. Let it go.
13. Take care of yourself. I didn't do this well. It's oh so easy to give your all to everything and everyone else and forget to take time for yourself. You will have more to give if you take time to re-energize your own batteries. Your heart and soul need the break too.
14. Protect your relationship. Don't forget to take time for the person you love. There is strength in numbers, and having a backup is so much help. I cherish the support Mark gives me.
15. Rejoice. I LOVE who my son is. I love his outlook on life. I think we should be more like him. I love his sense of humor. I love his positive attitude. I am forever thankful that God gave him to me. I wouldn't trade the last 21 years for anything.
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