So it's been pretty hectic around here since school started at the end of August. I started a new job, working for a non-profit assisted living facility for adults with developmental disabilities. It's been a learning experience, that's for sure, but I am enjoying myself a great deal. Even with the fairly consistent overtime, I don't have near the same level of stress that I had been experiencing for the first part of this year. It's good to be serving people and making a difference.
Aleric is making massive progress this year! His vocabulary continues to grow, he is engaging more and more in short conversation (2-3 exchanges) before going off to do his thing. He has stopped fighting us on doing his homework; in fact, this week has been the best week yet for homework! He usually has to write a certain letter each week, and this week was "I." He also had to fill in the missing capital and lowercase letters in the alphabet. Typically, we have to fight with him to get him to write his letters at all, and doing anything in alphabetical order has been a nightmare. This week, he was excited, and kept telling me "the letter I." We got through one line of lowercase Is and started the second line when he turned to the alphabet page. Since he wanted to do that part, we started going through the alphabet, with him giving me the next letter in line and writing the capital version. The phone rang, so I had to answer it, and while I was talking, Olivia stepped in to help him out! Totally unasked for! :D She was giving him the sound of the letter, and he would say the name and write it. They finished all of the capital letters together. When they finished that, I told him he had done enough homework for the day, so he was done. He looked at me, then at her, and said "Olivia, you help me?!" and they started the lowercase letters. It was so freaking amazing!! They only got a few of the lowercase letters done before she got frustrated with him and asked me if she could just do it for him. Figured it was time to stop for the night. The next night, he got his homework out and finished all of the lowercase letters AND 6 lines of I writing, without any prompting at all! I even tried to get him to take a break, worrying he'd be overstimulated, but he was just fine. He did it all without any help, too. I'm so proud of him.
I sent in a request before school started to have them evaluate Olivia. They agreed to do observations for a month to get a feel for her and see where we needed to go from there. We were also referred to a pediatric neurologist because she was eating plastic and rubber; we were concerned about pica issues. I spoke to her teacher a few times informally, and she said she had some tendencies of autism (her teacher used to teach PPCD, so she's very familiar with autism), but didn't seem to have too many issues right now. The speech teacher, as well, said she noticed some quirky things about her.
When we went to see the neurologist, she observed Olivia for an hour and a half while talking to me and Ian, and determined that there was sufficient cause for concern on a possible autism diagnosis, if not an anxiety disorder of some kind. She noticed Olivia was very fidgety and anxious. She wanted to see what the school said about testing before deciding what to do from there. We met with the school the next week, and all of a sudden, there were absolutely no concerns about Olivia, she was a perfectly normal 1st grader, and testing was being denied. One of their examples of her "normal behavior" was in P.E. when they were playing an alphabet game. While the rest of the kids (three classes of 1st graders) were running around the gym in chaos, my daughter had taken control of her group and delegated which letter was next, who was going to get it, where it went, etc etc. While that's wonderful and I'm excited she was able to do that, THAT IS NOT NORMAL 1ST GRADE BEHAVIOR!! What the hell?!? I went back to the neurologist, who referred us to a child psychologist for further testing.
Now, to back up a bit, when we met with the neurologist, I got the whole "you don't look like you have Asperger's" speech. I had to spend almost as much time trying to explain to her how and why I got diagnosed as I did explaining my concerns about Olivia. I ended up taking her a copy of my diagnosis report to end the discussion. I went to do the parent interview with the psychologist this week; the exact same thing happened! She didn't want to talk about Olivia, she wanted to talk about me! It was like being back in Dr Hoke's office, trying to convince him to just do the testing because I already knew that was the issue. She even told me when I came back with Olivia in JANUARY (?!?!?) for testing, she wanted me to bring her a list of examples of what made me think I have Asperger's, because she just didn't buy it. She also wanted to see the diagnosis report from Dr. Hoke. Can do.
I'm tired of having to justify myself and explain to other people how I experience life, and have them doubt and question me the whole time. I may not be classic Asperger's, but I do have a diagnosis, and it is RIGHT. In fact, since I've received my diagnosis, such a huge weight has been lifted off my shoulders. I'm not nearly as anxious as I used to be because I know WHY I react to things like I do. I have a better understanding of myself, and I'm not constantly trying to pretend I'm someone else so I "fit in," even though I never do. I have a job where my bosses completely understand the variables of autism, and when I say there's a limit to what I can handle in certain situations (like being unable to handle the social stress and lack of downtime in an 8-4 shift, which is why I won't work them), there's no arguing or questioning about it. They get it, and they work with me. I know I don't present typically, but most females, as I understand it, don't. We get written off with social anxiety, ADD or OCD. This psychologist even suggested that I really don't have Asperger's, I have ADD and a little OCD, even though I told her we did the Brown testing for ADD and OCD, and they came back negative.
It's incredibly frustrating and painful to have to constantly defend yourself from people who look at you with preconceived beliefs about your "perceived" issues and think they know better than you do how your mind works and how you feel. I already went through all of this crap with Dr Hoke, just trying to get diagnosed. He did the same thing, and I had to argue with him to do the tests. They came back as a surprise to him, but not to me. I knew I was right as soon as I started looking at Asperger's. I'll bring her the report, but that's going to be the end of the discussion about me with her. I'm worried about Olivia; my focus is on making sure we are aware of any issues that may be there. She was also very critical of the school diagnosis process, and I wonder if I bring Ricky to her, if she'll question his diagnosis and insist on doing testing all over again on her own. She can do it at her own expense. I have his scores and everything, and that's good enough for me.
TsarinaMama Vs The World
Friday, November 8, 2013
Wednesday, August 7, 2013
Took a Break, So Much to Catch Up
Wow, just logged back in and realized I hadn't posted anything in over a month! Whoops! There's definitely been plenty to rant about, I was just being lazy.
Basically, the biggest thing to have happened in the last few weeks is that I learned the school district had failed to correct Ricky's background history section of the evaluation reports. Now, when we had his ARD and I first saw the error (it included my name and Ricky's, but the history itself was for another child!), I pointed it out immediately in the meeting. The psychologist who did the evaluation apologized and said that they use a database program for all of these forms. She said she must have finished one child, gone in and replaced names, saved it, gone to do something else, and came back to see the names changed and assumed she'd already updated it. Pretty unprofessional, if you ask me, but hey, we're all human, and we all make mistakes. She said she'd fix it and I'd get a revised a copy. This was back in January.
Well, when we had his placement ARD in May to move him to the other school, I was told I'd get a copy of his final IEP, etc for next year. So I've been waiting for it. School's out for the summer, so I didn't figure I could get ahold of anyone there, so I just kinda let it slide. Well, when I went to the Parent Leadership Training in Houston a few weeks ago (which was AMAZING!!), I found out about an autism conference in Corpus Christi that is supposed to be absolutely massive! Since I was also told at the initial ARD that the district would send me to one conference anywhere in the state once a year, I decided I wanted to go to that one. This is where things get ugly.
I emailed one of the specialists at central office to ask how I needed to go about getting up the registration for this conference. She said she had never heard of a parent making a request like that before, so she told me to email the special education director. I figured maybe parents just never actually asked for it (so many special needs parents are just not involved!?!?), so she may actually NOT be aware of it.
I got a very defensive response from the director that they do not have a "policy" that "obligates" them to do any such thing. She said I misunderstood what I was told, blah blah blah. Made me angry, but hey, I didn't have it in writing (which I now know better), so I couldn't do anything about it. No conference in October for me. :(
Since I was already talking to her, I told her that I hadn't received Ricky's IEP stuff and asked if I could get a copy. I went by the office to pick it up, and sure enough, NONE of the errors had been corrected!
I've had to go through a mess of meetings to go over what was wrong (everything) and provide details of his history again. I even had the ECI office print me out of copies of both Olivia's and Ricky's full histories, just to be safe. Since the psychologist who did his testing is no longer with the district, they have to fax it off to her, have her sign it, fax it back, and then I'm supposed to get a copy in the mail. I'm waiting to receive it now. Most frustrating.
On the positive side, Ricky continues to develop his speech. We're getting more conversations with him, even though they're very short. He has developed a stronger joint attention -- he's making it a point to come get us and show us something he's doing. We were around a friend's granddaughter a few weeks ago, and Ricky made it a point to go get everyone who wasn't in the room and bring them in to see the baby. He just loved her! He said he doesn't want to go to back to school, and he's fighting me on writing. We're not making any progress there. School starts in a few weeks, and we're not where I wanted him to be by now. Grrr.....
Olivia has now been referred for autism evaluation. She has taken up eating non-food items (rubber bands, hair bands, her Squinkies, plastic). She seems driven to do so; when we catch her, she gets upset and apologizes, but says "something" is making her eat it. She locked herself in the bathroom Monday night and was eating again. I took her to the doctor yesterday, and he is referring her to a new doctor in his medical group who is a pediatric neurologist. He said she specializes in autistic behaviors and is very good. He's sending a referral for both of the kids, so they will have a doctor. I'm waiting for a call on when those appointments are going to be. It looks more and more likely that Olivia is going to be autistic as well.
My friend Christine is having another baby, her third. When I told Mom about it and said that Ian was taking extra precautions to make sure WE didn't have another, she told me I didn't need to have another baby. We had enough problems as it is, and it wouldn't be fair to risk having another with autism as well. Ouch. Thanks, that was helpful.
Basically, the biggest thing to have happened in the last few weeks is that I learned the school district had failed to correct Ricky's background history section of the evaluation reports. Now, when we had his ARD and I first saw the error (it included my name and Ricky's, but the history itself was for another child!), I pointed it out immediately in the meeting. The psychologist who did the evaluation apologized and said that they use a database program for all of these forms. She said she must have finished one child, gone in and replaced names, saved it, gone to do something else, and came back to see the names changed and assumed she'd already updated it. Pretty unprofessional, if you ask me, but hey, we're all human, and we all make mistakes. She said she'd fix it and I'd get a revised a copy. This was back in January.
Well, when we had his placement ARD in May to move him to the other school, I was told I'd get a copy of his final IEP, etc for next year. So I've been waiting for it. School's out for the summer, so I didn't figure I could get ahold of anyone there, so I just kinda let it slide. Well, when I went to the Parent Leadership Training in Houston a few weeks ago (which was AMAZING!!), I found out about an autism conference in Corpus Christi that is supposed to be absolutely massive! Since I was also told at the initial ARD that the district would send me to one conference anywhere in the state once a year, I decided I wanted to go to that one. This is where things get ugly.
I emailed one of the specialists at central office to ask how I needed to go about getting up the registration for this conference. She said she had never heard of a parent making a request like that before, so she told me to email the special education director. I figured maybe parents just never actually asked for it (so many special needs parents are just not involved!?!?), so she may actually NOT be aware of it.
I got a very defensive response from the director that they do not have a "policy" that "obligates" them to do any such thing. She said I misunderstood what I was told, blah blah blah. Made me angry, but hey, I didn't have it in writing (which I now know better), so I couldn't do anything about it. No conference in October for me. :(
Since I was already talking to her, I told her that I hadn't received Ricky's IEP stuff and asked if I could get a copy. I went by the office to pick it up, and sure enough, NONE of the errors had been corrected!
I've had to go through a mess of meetings to go over what was wrong (everything) and provide details of his history again. I even had the ECI office print me out of copies of both Olivia's and Ricky's full histories, just to be safe. Since the psychologist who did his testing is no longer with the district, they have to fax it off to her, have her sign it, fax it back, and then I'm supposed to get a copy in the mail. I'm waiting to receive it now. Most frustrating.
On the positive side, Ricky continues to develop his speech. We're getting more conversations with him, even though they're very short. He has developed a stronger joint attention -- he's making it a point to come get us and show us something he's doing. We were around a friend's granddaughter a few weeks ago, and Ricky made it a point to go get everyone who wasn't in the room and bring them in to see the baby. He just loved her! He said he doesn't want to go to back to school, and he's fighting me on writing. We're not making any progress there. School starts in a few weeks, and we're not where I wanted him to be by now. Grrr.....
Olivia has now been referred for autism evaluation. She has taken up eating non-food items (rubber bands, hair bands, her Squinkies, plastic). She seems driven to do so; when we catch her, she gets upset and apologizes, but says "something" is making her eat it. She locked herself in the bathroom Monday night and was eating again. I took her to the doctor yesterday, and he is referring her to a new doctor in his medical group who is a pediatric neurologist. He said she specializes in autistic behaviors and is very good. He's sending a referral for both of the kids, so they will have a doctor. I'm waiting for a call on when those appointments are going to be. It looks more and more likely that Olivia is going to be autistic as well.
My friend Christine is having another baby, her third. When I told Mom about it and said that Ian was taking extra precautions to make sure WE didn't have another, she told me I didn't need to have another baby. We had enough problems as it is, and it wouldn't be fair to risk having another with autism as well. Ouch. Thanks, that was helpful.
Wednesday, June 26, 2013
Ah, happy day!
Yesterday, June 25th, was my little man's 5th birthday. :) We had a great day playing Transformers, going swimming, eating pizza and cookie cake. Family friend Christine and her girls came swimming with us for his party, and even she commented on how much more he's talking. We were getting 5-6 word sentences, he was telling people to stop talking and finish eating, "I want," "Give me...," and at one point even yelled "Hey, guys, check it out! Come here, look!" when he wanted to show us a rock that was stuck in the sole of his shoe. Holy moo cow! We are making so much progress it's just unbelievable. I can't wait to see how much progress he makes over the summer, and when school starts, I just know he's going to be moving by leaps and bounds. Prayers are being answered; I don't ask that he be "cured," but I ask that we have the opportunities and resources needed to get him the help he needs to reach his full potential. He's already grown so much! Thanking God and continuing to ask for His blessings in our lives!
Wednesday, May 22, 2013
Where Next?
So, the kids are out of school for the summer next week. Award ceremonies and end-of-the-year parties this week and next. Then we're on our own until school starts next year.
So far so good; Ricky has been officially transferred to the other school, but I'm still waiting to find out whether or not Olivia has been. I can't even get her current school to confirm that they sent the transfer request over to the new campus. I'll throw a fit if they don't transfer her.
We'll meet with the Burkhart Center in a few weeks to do follow up for Ricky's behavioral observations. Should get some advice on strategies to try there.
Went to a PEN Project meeting last night and learned some stuff I wasn't aware of, so that's always good. I hate going to meetings/trainings where nothing new is discussed. I'm going to the Parent Leadership Training in June to be certified, and I was told last night that the is the first step to getting a foot in the door for employment. Might prove interesting...
So for now, we're enjoying the rest of the year and preparing for the summer. I'm trying to come up with some ideas that will help keep both kids busy, entertained, and on track for next year. No regressing in this house!
Museums, parks, camping, swimming, VBS. What else is there to do?
So far so good; Ricky has been officially transferred to the other school, but I'm still waiting to find out whether or not Olivia has been. I can't even get her current school to confirm that they sent the transfer request over to the new campus. I'll throw a fit if they don't transfer her.
We'll meet with the Burkhart Center in a few weeks to do follow up for Ricky's behavioral observations. Should get some advice on strategies to try there.
Went to a PEN Project meeting last night and learned some stuff I wasn't aware of, so that's always good. I hate going to meetings/trainings where nothing new is discussed. I'm going to the Parent Leadership Training in June to be certified, and I was told last night that the is the first step to getting a foot in the door for employment. Might prove interesting...
So for now, we're enjoying the rest of the year and preparing for the summer. I'm trying to come up with some ideas that will help keep both kids busy, entertained, and on track for next year. No regressing in this house!
Museums, parks, camping, swimming, VBS. What else is there to do?
Thursday, May 16, 2013
Advice from the Best!
I hate that I missed out on this opportunity!! I didn't find out
until I was waiting to pick up the kids from school that Autism Speaks
was live hosting a chat with Temple Grandin this afternoon!! I
submitted a question, but I was too late in the queue to get pulled. :(
All the same, lots of questions and advice from the best of the best:
Thursday May 16, 2013
Thursday May 16, 2013
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I have to say goodbye now and it was wonderful talking with everyone today!!! |
Wednesday, May 8, 2013
More Scriptures!!!
I found this other autism mom's blog page, and she had listed all of these wonderful Bible verses for encouragement, etc. Ah, timing is a wonderful and blessed gift indeed!
Here is the link to her blog as well: http://autism45.wordpress.com
Psalm 6:2,3 “Pity me, O Lord, for I am weak, and I am upset and disturbed. My mind is filled with apprehension and with gloom. Oh, restore me soon.”
Psalm 13:2 “How long must I be hiding daily anguish in my heart?”
Psalm 55:6 & 7 “Oh, for wings like a dove, to fly away and rest! I would fly to the far off deserts and stay there. I would flee to some refuge from all this storm.”
Psalm 25:15-17 “My eyes are ever looking to the Lord for help, for He alone can rescue me. Come, Lord, and show me Your mercy, for I am helpless, overwhelmed, in deep distress: my problems go from bad to worse. Oh, save me from them all! See my sorrows, feel my pain; forgive my sins.”
Psalm 27:7 “Listen to my pleading, Lord! Be merciful and send the help I need.”
Psalm 34:18,19 “The Lord is close to those whose hearts are breaking; He rescues those who are humbly sorry for their sins. The good man does not escape all troubles — he has them too. But the Lord helps him in each and every one.”
Psalm 50:15 “I want you to trust Me in your times of trouble, so I can rescue you, and you can give Me the glory.”
Psalm 57: 1-3 “O God, have pity, for I am trusting You! I will hide beneath the shelter of Your wings until this storm is past. I will cry to the God of heaven who does such wonders for me. He will send down help from heaven to save me, because of His love and his faithfulness.”
Psalm 94:19 “Lord, when doubts fill my mind, when my heart is in turmoil, quiet me and give me renewed hope and cheer.”
Psalm 4:3,8 “Mark this well: The Lord has set apart the redeemed for Himself. Therefore He will listen to me and answer when I call to Him.
Psalm 4:8 “I will lie down in peace and sleep, for though I am alone, O lord, you will keep me safe.”
Psalm 16:5 “He guards all that is mine.”
Psalm 31:24 “So cheer up! Take courage if you are depending on the Lord.”
Psalm 32:7 “You are my hiding place from every storm of life.”
Psalm 34:1,2 “I will praise the Lord no matter what happens, I will constantly speak of His glories and grace. I will boast of all His kindness to me. Let all who are discouraged take heart.”
Psalm 34:4 “For I cried to Him and He answered me! He freed me from all my fears.”
Psalm 40:1-3 “I waited patiently for God to help me; then He listened and heard my cry. He lifted me out of the pit of despair, out from the bog and the mire, and set my feet on a hard, firm path and steadied me as I walked along. He has given me a new song to sing, of praises to our God.”
Psalm 59:9 “O God my Strength! I will sing Your praises, for You are my place of safety. My God is changeless in his love for me and He will come and help me.”
Psalm 63:6 ” I lie awake at night thinking of You — of how much you have helped me — and how I rejoice through the night beneath the protecting shadow of your wings.”
Psalm 84:5-7 “Happy are those who are strong in the Lord, who want above all else to follow Your steps. When they walk through the valley of weeping it will become a place of springs where pools of blessing and refreshment collect after rains! They will grow constantly in strength and each of them is invited to meet with the Lord in Zion.”
Psalm 112:4,6-8 “Praise the Lord! For all who fear God and trust in Him are blessed beyond expression. Yes, happy is the man who delights in doing His commands. When darkness overtakes him, light will come bursting in. Such a man will not be overthrown by evil circumstances. God’s constant care of him will make a deep impression on all who see it. He does not fear bad news, nor live in dread of what may happen, for he is settled in his mind that Jehovah will take care of him. That is why he is not afraid, but can calmly face his foes.”
Psalm 116:6 “The Lord protects the simple and the childlike.”
Psalm 119:49-50 “Never forget Your promises to me Your servant, for they are my only hope. They give me strength in all my troubles; how they refresh and revive me!”
Psalm 145:17-19 “The Lord is fair in everything He does, and full of kindness. He is close to all who call on Him sincerely. He fulfills the desires of those who reverence and trust Him; He hears their cries for help and rescues them.”
Psalm 147:3 “He heals the broken-hearted, binding up their wounds.”
Here is the link to her blog as well: http://autism45.wordpress.com
Scriptures That Ministered To Me!
(ALL from the Living Bible)–Written down by : Carole Norman ScottPsalm 6:2,3 “Pity me, O Lord, for I am weak, and I am upset and disturbed. My mind is filled with apprehension and with gloom. Oh, restore me soon.”
Psalm 13:2 “How long must I be hiding daily anguish in my heart?”
Psalm 55:6 & 7 “Oh, for wings like a dove, to fly away and rest! I would fly to the far off deserts and stay there. I would flee to some refuge from all this storm.”
Psalm 25:15-17 “My eyes are ever looking to the Lord for help, for He alone can rescue me. Come, Lord, and show me Your mercy, for I am helpless, overwhelmed, in deep distress: my problems go from bad to worse. Oh, save me from them all! See my sorrows, feel my pain; forgive my sins.”
Psalm 27:7 “Listen to my pleading, Lord! Be merciful and send the help I need.”
Psalm 34:18,19 “The Lord is close to those whose hearts are breaking; He rescues those who are humbly sorry for their sins. The good man does not escape all troubles — he has them too. But the Lord helps him in each and every one.”
Psalm 50:15 “I want you to trust Me in your times of trouble, so I can rescue you, and you can give Me the glory.”
Psalm 57: 1-3 “O God, have pity, for I am trusting You! I will hide beneath the shelter of Your wings until this storm is past. I will cry to the God of heaven who does such wonders for me. He will send down help from heaven to save me, because of His love and his faithfulness.”
Psalm 94:19 “Lord, when doubts fill my mind, when my heart is in turmoil, quiet me and give me renewed hope and cheer.”
Psalm 4:3,8 “Mark this well: The Lord has set apart the redeemed for Himself. Therefore He will listen to me and answer when I call to Him.
Psalm 4:8 “I will lie down in peace and sleep, for though I am alone, O lord, you will keep me safe.”
Psalm 16:5 “He guards all that is mine.”
Psalm 31:24 “So cheer up! Take courage if you are depending on the Lord.”
Psalm 32:7 “You are my hiding place from every storm of life.”
Psalm 34:1,2 “I will praise the Lord no matter what happens, I will constantly speak of His glories and grace. I will boast of all His kindness to me. Let all who are discouraged take heart.”
Psalm 34:4 “For I cried to Him and He answered me! He freed me from all my fears.”
Psalm 40:1-3 “I waited patiently for God to help me; then He listened and heard my cry. He lifted me out of the pit of despair, out from the bog and the mire, and set my feet on a hard, firm path and steadied me as I walked along. He has given me a new song to sing, of praises to our God.”
Psalm 59:9 “O God my Strength! I will sing Your praises, for You are my place of safety. My God is changeless in his love for me and He will come and help me.”
Psalm 63:6 ” I lie awake at night thinking of You — of how much you have helped me — and how I rejoice through the night beneath the protecting shadow of your wings.”
Psalm 84:5-7 “Happy are those who are strong in the Lord, who want above all else to follow Your steps. When they walk through the valley of weeping it will become a place of springs where pools of blessing and refreshment collect after rains! They will grow constantly in strength and each of them is invited to meet with the Lord in Zion.”
Psalm 112:4,6-8 “Praise the Lord! For all who fear God and trust in Him are blessed beyond expression. Yes, happy is the man who delights in doing His commands. When darkness overtakes him, light will come bursting in. Such a man will not be overthrown by evil circumstances. God’s constant care of him will make a deep impression on all who see it. He does not fear bad news, nor live in dread of what may happen, for he is settled in his mind that Jehovah will take care of him. That is why he is not afraid, but can calmly face his foes.”
Psalm 116:6 “The Lord protects the simple and the childlike.”
Psalm 119:49-50 “Never forget Your promises to me Your servant, for they are my only hope. They give me strength in all my troubles; how they refresh and revive me!”
Psalm 145:17-19 “The Lord is fair in everything He does, and full of kindness. He is close to all who call on Him sincerely. He fulfills the desires of those who reverence and trust Him; He hears their cries for help and rescues them.”
Psalm 147:3 “He heals the broken-hearted, binding up their wounds.”
Purpose
Scripture for those who seek understanding of autism's role in a person's life:
1 Corinthians 12:18
But as it is, God arranged the members in the body, each one of them, as he chose.
2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is
made perfect in weakness.” Therefore I will boast all the more gladly of
my weaknesses, so that the power of Christ may rest upon me.
John 9:1-3
As he passed by, he saw a man blind from birth. And his disciples asked
him, “Rabbi, who sinned, this man or his parents, that he was born
blind?” Jesus answered, “It was not that this man sinned, or his
parents, but that the works of God might be displayed in him.
I
can't answer why God has given us autism, but I do know that it is
there to serve a purpose. And I find peace and comfort in knowing that
there is a plan in place.
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