A mom learning to advocate for her child at church and elsewhere {a guest post by my friend Kelly}
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My friend Kelly and I met online in a group of women who all were expecting babies around the same time. When we met, she and her husband were serving in campus ministry, and after a couple job changes and relocations, they remain involved in their church. Her son Noah and my son Robbie will both turn three this spring. I am incredibly thankful that Kelly was willing to write about her experiences parenting Noah and allow me to share her words here. (I'm also willing to let me borrow some precious pictures from her Facebook profile! Isn't their family precious?).
There is nothing more frightening, disheartening, and honestly disappointing than finding out that your child has a problem. It seems like from the beginning our son Noah has had a rough go at it. His poor little head got stuck when he was born, and he had pretty seriously jaundice for five days that led to an extended hospital stay. After a few month, he stopped being able to have a bowel movement without help which led to tons of testing and no outcome.
(He poos on his own now perfectly in case you were wondering.)
Then around 9-month he started having seizures which led to more testing. Around the same time we notices he wasn't moving much. Well, he wasn't moving at all. No rolling, no sitting, up, no crawling, no nothing. From there we did physical theraphy to get him moving, and just before his first birthday, he finally crawled. But, alas, we still had very few words. We decided to really focus on sign language. For me it was nothing more than a parlor trick that I couldn't wait to show the other moms. In reality, it would become a tool that right now we live, breath, and function off of day by day.
Speaking of day by day, that little boy is now almost 3 and can speak approximately 3 words on a good day, and very few and far between. We knew something was wrong and had to get him some help. Early intervention came in, evaluated him and scored his verbal communication at the level of a 10 month old. Ouch, that hurt. From there, Noah went into speech therapy and was diagnosed with Apraxia of the Speech.
When I heard that, you may have ripped the very spirit out of my soul.
The very child that captured my heart the night he was born. So beautiful and perfect and now he's been given a label that says although he's wonderful and beautiful and mine, he's also got some issues to work through. It was devastating.
Noah has been in therapy for a month now and is doing well. We can see he's trying to make new sounds, but from what I understand this journey isn't a sprint, it's a marathon. Honestly, I think it's more of a around-the-world-in-4-years kind of things.
It's easy to get discouraged. It's hard when your friend's daughter who is a year younger than Noah can have conversations with her mommy and tell her how much she loves her, but Noah can't even tell me he wants a banana. I long for a time to hear Noah tell me he loves me, heck I'll settle for "I hate you, Mom," at this point. It's a struggle when everyone thinks there is something wrong cognitively with your son but in actuality he's very smart. He understands more than more of his peers do. He's social, and he loves to play with other kids (until they steal his trucks, and then it's on!).
A big word I keep hearing over and over again is advocacy, and as Noah's mom, I have to fight his fights and be his voice. I can stay this isn't my problem area, but at times I may advocate too much. From the beginning of this, I said that no one was going to make Noah feel dumb or behind, and if they did, we were going to have a problem. However, jumping to conclusions won't get me far, and most of the time what I assume could be wrong.
Last Sunday at church we were having a children's program. The week before the director asked if Noah would be a sheep. I was so excited! Noah could participate just like the other children. The Saturday before I recieved a Facebook message asking if I would stay with our one-year-old daughter because the nursery worker had to be in the play. Automatically I assumed they kicked Noah out of the play because he couldn't talk. I was so upset. I cried the night before. From that moment on, I thought Noah was going to be an outcast.
When I got to the church, though, that wasn't the case at all. They just wanting me to hold my daughter during the performance. It was as simple as that.
Wait, you mean not everyone is out to destroy me? I'll think about that more.
Most moms want the very, very best for their children. Most of us work hard to make that happen. But sometimes God throws us a card to play, and through that play we develop into more of what he wants us to be. Eventually I am going to write about what Noah taught me through all this. For now I see he's teaching me trust the Father. He's teaching me to be patient with him and to let his therapy be a priority. Noah is teaching me not to compare him to other children. God made him special, and we get to be better people because of it. Has Noah taught me these things? No, not yet. But we are working on it.
If you don't have a child with problems or special needs, I don't say consider yourself lucky, but consider yourself envied. Be careful of those around you with children that are different. Accommodate them, but make them feel no different than anyone else. I want Noah in age-appropriate classrooms. He should be the sheep at the church play, and when it's time he'll go to Kindergarten with everyone else. Don't treat any child different, because behind closed doors is a mother trying to find her place in her child's world.
Join her in it sometime.
There is nothing more frightening, disheartening, and honestly disappointing than finding out that your child has a problem. It seems like from the beginning our son Noah has had a rough go at it. His poor little head got stuck when he was born, and he had pretty seriously jaundice for five days that led to an extended hospital stay. After a few month, he stopped being able to have a bowel movement without help which led to tons of testing and no outcome.(He poos on his own now perfectly in case you were wondering.)
Then around 9-month he started having seizures which led to more testing. Around the same time we notices he wasn't moving much. Well, he wasn't moving at all. No rolling, no sitting, up, no crawling, no nothing. From there we did physical theraphy to get him moving, and just before his first birthday, he finally crawled. But, alas, we still had very few words. We decided to really focus on sign language. For me it was nothing more than a parlor trick that I couldn't wait to show the other moms. In reality, it would become a tool that right now we live, breath, and function off of day by day.
Speaking of day by day, that little boy is now almost 3 and can speak approximately 3 words on a good day, and very few and far between. We knew something was wrong and had to get him some help. Early intervention came in, evaluated him and scored his verbal communication at the level of a 10 month old. Ouch, that hurt. From there, Noah went into speech therapy and was diagnosed with Apraxia of the Speech.
When I heard that, you may have ripped the very spirit out of my soul.
The very child that captured my heart the night he was born. So beautiful and perfect and now he's been given a label that says although he's wonderful and beautiful and mine, he's also got some issues to work through. It was devastating.
Noah has been in therapy for a month now and is doing well. We can see he's trying to make new sounds, but from what I understand this journey isn't a sprint, it's a marathon. Honestly, I think it's more of a around-the-world-in-4-years kind of things.
It's easy to get discouraged. It's hard when your friend's daughter who is a year younger than Noah can have conversations with her mommy and tell her how much she loves her, but Noah can't even tell me he wants a banana. I long for a time to hear Noah tell me he loves me, heck I'll settle for "I hate you, Mom," at this point. It's a struggle when everyone thinks there is something wrong cognitively with your son but in actuality he's very smart. He understands more than more of his peers do. He's social, and he loves to play with other kids (until they steal his trucks, and then it's on!).
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| ©Jeremiah Daniel Spray |
Last Sunday at church we were having a children's program. The week before the director asked if Noah would be a sheep. I was so excited! Noah could participate just like the other children. The Saturday before I recieved a Facebook message asking if I would stay with our one-year-old daughter because the nursery worker had to be in the play. Automatically I assumed they kicked Noah out of the play because he couldn't talk. I was so upset. I cried the night before. From that moment on, I thought Noah was going to be an outcast.
When I got to the church, though, that wasn't the case at all. They just wanting me to hold my daughter during the performance. It was as simple as that.
Wait, you mean not everyone is out to destroy me? I'll think about that more.
Most moms want the very, very best for their children. Most of us work hard to make that happen. But sometimes God throws us a card to play, and through that play we develop into more of what he wants us to be. Eventually I am going to write about what Noah taught me through all this. For now I see he's teaching me trust the Father. He's teaching me to be patient with him and to let his therapy be a priority. Noah is teaching me not to compare him to other children. God made him special, and we get to be better people because of it. Has Noah taught me these things? No, not yet. But we are working on it. If you don't have a child with problems or special needs, I don't say consider yourself lucky, but consider yourself envied. Be careful of those around you with children that are different. Accommodate them, but make them feel no different than anyone else. I want Noah in age-appropriate classrooms. He should be the sheep at the church play, and when it's time he'll go to Kindergarten with everyone else. Don't treat any child different, because behind closed doors is a mother trying to find her place in her child's world.
Join her in it sometime.