Dear Special Needs Parents,
I was in a therapy session today. We were going over some of Leah's past experiences. I don't like going over them. Things come rushing back like a waterfall over my head. In a blinding rush of emotion. I think about the times that we had to rush her to the hospital not knowing if she would make it. Then the other times that her life flashed in front of my eyes in mere seconds as she would dash out in traffic or in a parking lot. Already 8 and brushed death more times than I can count on at least one hand. Those times, I felt in the moment so helpless. I felt like I had no control. Do you have times like these. Is your child medically critical? Is their behavior so impulsive that a second could change everything?
We had four times where her blood sugar was so low that it would have been 30 minutes at the most before her body would shut down. I have had her run. She is super fast when she is angry. Like unbelievable fast. She has run into traffic in a parking lot or a busy street enough to drive me to panic in a parking lot. Parking lots scare me to death. I've had one time where I was on crutches unable to catch her. Unable to save her. Luckily her Grandma reached her just in time. It would have been over in 10 seconds. A dark very busy street just a little bitty thing darting. The thought just gives me terror even now two years later. It was two years ago. You better believe I helicopter like mad. I am unapologetic about it too. I don't want to let her out of my sight.
The blood sugar thing was never really technically figured out. We do know she has somewhat of a hard time maintaining sugar levels even today. She will go into her night fast and wake in the morning throwing up. Ketones already trying to supplement her sugar supply. She gets into cycle vomiting that will send us to the ER. However, we haven't seen low blood sugar for nearly 2 years. We watch it like a hawk. We found that cornstarch helps maintain her levels. She is also taking medicine for stomach migraine that helps with vomiting. We really never know when these cycles will happen. It is very random and without warning. You just know that the end of it is the ER.
The impulsive behavior is another matter all together. When she was 4 I had the resolve to not medicate her. I thought she was too young to be put on something. It took just seconds for me to change my mind. Seconds. I was in a parking lot. A very busy one. I lost my grip, she took off running. I got her right before she got to the really busy part. A car barely missing her. As soon as we were in the car, I made a call. Leah is fine about ninety percent of the time. It is the ten percent that we do not know what she is going to do with. These are times that you have to be alert and ready to protect her from...her.
It is hard for me to reflect on these things. I know that I have to in some way get over them. I shouldn't be afraid of a parking lot. Do I have time to deal with these feelings? I just act. I just move on. When I think about them I can feel my heart beating fast, my breath quicken like I'm back in it. However, by the Grace of God Leah is still with us. Sound asleep, safe in her bed. Knowing that whatever panic I can dream up, God has the Grace to supply another day. I also can rejoice in the fact that I do not dwell in most cases. I most of the time take action. I most of time decide what needs to be done to prevent. I breathe and think tomorrow 'tis a new day. I'm not all the way there in knowing everything about Leah. God does. I know that He gifted me her. Maybe not for me to strengthen her. Maybe she is to strengthen me. Maybe I'm suppose to hit my knees at these times and come to Him. Let Him have it. I write this as a way to work it out in my own mind. But just maybe someone feels the way I do.
Blessings,
Kandi
Kandi, Greg and Girls
Wednesday, January 31, 2018
Wednesday, January 24, 2018
Letters to special needs parents 4 (a series)
Dear Special Needs parents,
Are you like me? Are you knee deep in paperwork? Did you start getting an on slot of paperwork and think what purpose will this serve? What will it gain my child if I fill this or that out? What is the best for my child? I have ask these questions myself. Most of the time it wasn't self motivated pressure that caused me to fill them out. Most of the time an event happened where I had not a choice but to start pen to paper. In that moment it wasn't a hardship but a hope that I could make it better for them. If I could make it better, I shall. Soon as I did this a couple of times when it was panic driven. I started seeing the results of paths that I lad forth. Now I do not wait until panic sets in. I just fill the paperwork out. Still with a sense of loathing. However, the hope that it provides lurks ever so slightly enough for me to be able to finish the tasks.
The problem for me waiting for panic to set in is paperwork takes time to process. It isn't a instant fix. Things have to be assembled. In the meantime you are one desperate parent. Desperation is not a good place to be as a special needs parent. We are already on the verge of it anyway. It is best to have paperwork prepared and sent in. I had to learn this the hard way. Certainly I can help others not. If your child needs help with something; go get it. It will be a pain for you by all means. It will be time consuming and trying to find the avenue to get it can be very frustrating. I have chased some things for a year and half. An all consuming chase. In the end it was well worth it. The amount of effort had blossomed into growth for my child. I spent two years trying to get mental health services for my other child. I wasted not a second for the effort. She has grown and hope springs like wildflowers in spring.
I realized I am far more determined(stubborn) then most. I realize that when I set my mind on something I will not stop. I realize that a lot of people are not like that. It is hard to be like that. One can get very frustrated by the process. By the failure rather than the hope of success and chose to turn around. I say take a break, sit and regroup. I have done that many times. Take a different path but take it in the same direction. I take things by inches. If I fail in one area but gained access to something that might lead me to something else I succeeded there. I have failed many times to get certain things. I kept pushing. I kept gaining. It is the only way I know how. My children can't do things right now. So I must get them access to be able to give them the skills to learn how. Sometimes we do not have all the answers for them. It is hard is it not? As parents to say they need more than me. They need this person or that.
I would say this to those who are Christ centered as I. We already should have that viewpoint. They do need more than you. You should be second. Christ is first. They need Christ first. God knows the needs of His special ones. He wants those to be able to serve them in kindness. They are certainly out there. Give them the opportunity to do such. It will bring blessings upon them. While they bring blessings upon you. Do not try and shoulder all of it. God did not mean for that do be. We all have ways to bless through serving others. Sometimes paperwork is required, ok most of the time. Sometimes it is not. When you get that said paperwork know that can mean hope, kindness and opportunity. Where desperation lies instead. Take up the pen.
Blessings,
Kandi
Are you like me? Are you knee deep in paperwork? Did you start getting an on slot of paperwork and think what purpose will this serve? What will it gain my child if I fill this or that out? What is the best for my child? I have ask these questions myself. Most of the time it wasn't self motivated pressure that caused me to fill them out. Most of the time an event happened where I had not a choice but to start pen to paper. In that moment it wasn't a hardship but a hope that I could make it better for them. If I could make it better, I shall. Soon as I did this a couple of times when it was panic driven. I started seeing the results of paths that I lad forth. Now I do not wait until panic sets in. I just fill the paperwork out. Still with a sense of loathing. However, the hope that it provides lurks ever so slightly enough for me to be able to finish the tasks.
The problem for me waiting for panic to set in is paperwork takes time to process. It isn't a instant fix. Things have to be assembled. In the meantime you are one desperate parent. Desperation is not a good place to be as a special needs parent. We are already on the verge of it anyway. It is best to have paperwork prepared and sent in. I had to learn this the hard way. Certainly I can help others not. If your child needs help with something; go get it. It will be a pain for you by all means. It will be time consuming and trying to find the avenue to get it can be very frustrating. I have chased some things for a year and half. An all consuming chase. In the end it was well worth it. The amount of effort had blossomed into growth for my child. I spent two years trying to get mental health services for my other child. I wasted not a second for the effort. She has grown and hope springs like wildflowers in spring.
I realized I am far more determined(stubborn) then most. I realize that when I set my mind on something I will not stop. I realize that a lot of people are not like that. It is hard to be like that. One can get very frustrated by the process. By the failure rather than the hope of success and chose to turn around. I say take a break, sit and regroup. I have done that many times. Take a different path but take it in the same direction. I take things by inches. If I fail in one area but gained access to something that might lead me to something else I succeeded there. I have failed many times to get certain things. I kept pushing. I kept gaining. It is the only way I know how. My children can't do things right now. So I must get them access to be able to give them the skills to learn how. Sometimes we do not have all the answers for them. It is hard is it not? As parents to say they need more than me. They need this person or that.
I would say this to those who are Christ centered as I. We already should have that viewpoint. They do need more than you. You should be second. Christ is first. They need Christ first. God knows the needs of His special ones. He wants those to be able to serve them in kindness. They are certainly out there. Give them the opportunity to do such. It will bring blessings upon them. While they bring blessings upon you. Do not try and shoulder all of it. God did not mean for that do be. We all have ways to bless through serving others. Sometimes paperwork is required, ok most of the time. Sometimes it is not. When you get that said paperwork know that can mean hope, kindness and opportunity. Where desperation lies instead. Take up the pen.
Blessings,
Kandi
Monday, January 8, 2018
The easiest things as a Special Needs parent
I was going to make just one point in this post. It is a huge point and needs to be said. However, as I was thinking there is actually two things that have maybe equal importance as a parent. We now that it most things it is very difficult to be a parent to those with special needs. It takes a lot of patience. Sometimes that has to be learned, painfully learned. It takes a selfless drive that most people have a hard time with. It takes a willingness to fail unmercifully over and over again. However, I say to you that without this failure success is not possible. We have to fail in order to succeed. That is how success happens.
We wonder as special needs parent who are also Christians how am I going to teach them Christ. How can I possibly get them to understand? Will they be lost? How do I know that they are in God's hand. This is easy. Christ seeks out those who are crippled, blind and deaf. It says so in Luke 14. We also know that the majority of His ministry is healing special needs individuals. Saving those with special needs. Luke14:13-14"But when you give a reception, invite the poor, the crippled, the lame, the blind, 14 and you will be blessed, since they do not have the means to repay you; for you will be repaid at the resurrection of the righteous." We as special needs parents have been BLESSED. We have had them placed at our table. Christ has invited them to our table through means of family. Christ seeks them and means to bless them. This is the easiest part of being a special needs parent. Christ has specifically called upon us to minister to these individuals. We have been blessed with the opportunity in our own household. This is something to be extremely grateful for. In our own family we are bringing Glory to God.
Also as a special needs parent your child with most likely exceed the expectations you have placed on them. If you have a typical child you might have enormous dreams for your child. They may never meet those expectations. Individuals with special needs will meet expectations and exceed. They might not be typical but they will work hard. They will surprise the amount of effort. The amount of joy in life they bring. We can rejoice in these things. We do not want to dwell long in the grief of not having a typical child. There is reasons that God knows that they are not typical. Sometimes we have circumstances that caused the disability but we need to remember that God does not make mistakes. God knows what we need. I speak to you as an individual who has faith. If we are to understand these things in this prospective then understand you are blessed beyond measure. Your family has a much higher chance to glorify God. We all get these opportunities of course. However, not everyday that God purposely places someone at your table that He says will be a blessing to you. Do not grieve that but rejoice.
We wonder as special needs parent who are also Christians how am I going to teach them Christ. How can I possibly get them to understand? Will they be lost? How do I know that they are in God's hand. This is easy. Christ seeks out those who are crippled, blind and deaf. It says so in Luke 14. We also know that the majority of His ministry is healing special needs individuals. Saving those with special needs. Luke14:13-14"But when you give a reception, invite the poor, the crippled, the lame, the blind, 14 and you will be blessed, since they do not have the means to repay you; for you will be repaid at the resurrection of the righteous." We as special needs parents have been BLESSED. We have had them placed at our table. Christ has invited them to our table through means of family. Christ seeks them and means to bless them. This is the easiest part of being a special needs parent. Christ has specifically called upon us to minister to these individuals. We have been blessed with the opportunity in our own household. This is something to be extremely grateful for. In our own family we are bringing Glory to God.
Also as a special needs parent your child with most likely exceed the expectations you have placed on them. If you have a typical child you might have enormous dreams for your child. They may never meet those expectations. Individuals with special needs will meet expectations and exceed. They might not be typical but they will work hard. They will surprise the amount of effort. The amount of joy in life they bring. We can rejoice in these things. We do not want to dwell long in the grief of not having a typical child. There is reasons that God knows that they are not typical. Sometimes we have circumstances that caused the disability but we need to remember that God does not make mistakes. God knows what we need. I speak to you as an individual who has faith. If we are to understand these things in this prospective then understand you are blessed beyond measure. Your family has a much higher chance to glorify God. We all get these opportunities of course. However, not everyday that God purposely places someone at your table that He says will be a blessing to you. Do not grieve that but rejoice.
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