This is an email a sweet friend sent me a few months back that I came across...thought I would share because it made me smile. ;P
Dear Friends With Special Needs Kids,
I have something to tell you. And I’m thinking that you don’t hear it enough. So come closer and pay attention, OK? This is important.
YOU ROCK.
Yes, you.
Why are you still looking at everybody else in the room?
I’m talking to YOU.
And no, I don’t mean that you deserve a medal just for parenting your kid. That’s what parents do. We parent. Our kids. So yay, for you cause you stuck around? Hell no.
And I don’t mean to imply that I’m offering sympathy because your path is different – and likely more difficult – than most. It is what it is. And I’m not much for sympathy.
What I do mean is that you rock because of the WAY that you parent your kid. And the WAY that you choose to walk this path.
You rock because you involuntarily calculate the thousand different variables in every situation and adjust for them on the fly. Because you are alert for the danger, the triggers, the anything, the everything that might turn everything on a dime. Twenty, thirty, hundreds of times a day. Navy Seals have nothing on you, kid.
You rock because you spend so damn much time preparing for what look to the world like tiny, insignificant moments. Because you know that there are no such things as tiny, insignificant moments.
You rock because you show your child patience even when you feel nothing of the sort.
You rock because you create a hard shell for the world, but remain tender for your child.
You rock because you have learned another language. Or two. Heck, you even speak Abbreviate – ASD, IEP, DSM, ADHD, ABA, BCBA, BT, RDI, GFCF, ADOS. See?
You rock because you SEE miracles in your child’s smallest victories. Because you celebrate simple successes. Because you know how hard they are won.
You rock because you look out for each other. Because you treat every child as if he were your own. Because you know that it really does take a village to raise a child.
You rock because you appreciate the people who make up that village. Because you see God’s angels along your path – and recognize them for who they are. And tell them how much they matter.
You rock because you don’t ever stop pushing and encouraging and expecting and demanding and believing and celebrating.
You rock because you know how important it is to take time for YOU.
You rock because you refuse to let anyone define your child by his challenges. Because you know there is so much more to who he is than a label.
You rock because you’re not afraid of the label. Because you know that as hard as it may have been to hear, it will be the key to a community for your child.
You rock because you are a different kind of parent. Because your know that just because your child doesn’t have words, that sure as hell doesn’t mean she’s not communicating.
You rock because you do everything you possibly can to figure out what it is that she’s saying.
You rock because when a doctor says, “It’s never been done before,” you hear, “Good, it’s possible.”
You rock because when you get angry, you use the anger to propel you forward. To make waves. To create change. To make life better for your child.
You rock because you refuse to accept complacency – from anyone.
You rock because you talk. Because you change hearts and minds and laws.
You rock because you’re not afraid to think big – really big when it comes to your kids. If programs don’t exist, you will create them. If the system doesn’t work, you will change it.
You rock because you never forget to think small. If people around you don’t understand, you talk to them. Teach them.
You rock because you raise your so-called typical children to know that typical is an illusion and compassion is everything.
You rock because you know that EVERYONE has something to contribute in their own way. And because you know it’s worth everything we have to ensure they can.
You rock because you respect one another – even when you disagree.
You rock because you seek the advice of those who have come closest to sharing your child’s path. Because you never, ever drown their voices out of the conversation. Because you know how vital their perspective is. Because you know that this IS a conversation.
You rock because you give your child the space to fail – giving them the ability to succeed.
You rock because you function on ludicrously little sleep.
You rock because even when you wake up convinced that you can’t, you do.
Dear Friends With Special Needs Kids,
I have something to tell you. And I’m thinking that you don’t hear it enough. So come closer and pay attention, OK? This is important.
YOU ROCK.
(author unknown)
Tuesday, March 19, 2013
What doesn't kill you makes you stronger...
So many things in our life are so very different from even just last year. Some might say "What doesn't kill you, makes you stronger." Life is always crazy so it's how you "Roll with the punches".
So, as I live each day, I try to work on myself and help Eric learn the morals and values of life. I know my days will definitely be hard in the future and I thank God everyday for the people in our life. I also realize that having unhealthy relationships are not good so I also work on having the best of friends around Eric and I at all times. Negative relationships will not be tolerated.
Last year at this time, I had just sold my wedding ring to buy a car, to at least get us around. I was working at the Blow Dry Bar and getting back into the groove of living back in the States, being a working, single Mom. I was working part time and with Eric the rest of my time. Life last year was rough. I tried so hard not to cry with Eric around but inside I was worried about our future, non stop. Eric's receptive is close to his age so I know he is aware of everything.
I gained a ton of weight in the past 5 years after having Eric. I have had some crazy stress in my life and I was also diagnosed 5years ago with Ulcerative Colitis aka UC. This time last year I was on medication (supposedly forever) for my UC and was having on and off issues mostly because stress irritates UC. I was not exercising but was trying to stay away from foods that I could not digest. My UC was definitely NOT under control and honestly, I was so tired of taking medication 2400mg a day to maintain my disease. I had to change something!
I have always been fortunate to have my Mom and Aunt around to help with the daily things with Eric. Without them, I wouldn't have been able to survive the last year! I have a close group of girls who I consider Eric's Aunties and they also helped me tremendously through the past year or so. I am also lucky to have all of Eric's therapist's both in school as well as outside of school who help me daily with Eric. Without them, I truly could not!
That was last year....
This year has been filled with so many emotions, both good and sad. For the most part, both Eric and I are well! Everything seems to be falling into place. Eric is doing fabulous and I couldn't be prouder. He is reaching new developmental milestones and we are so excited for what will come in the future! He continues to grow and show his spunky, cute little attitude everyday, always with a smile. He will be 7 this coming July and I cannot believe it! His walking and running is getting better each day. His seizures seem to be controlled (knock on wood). Overall....he makes me so proud to be his Mom. Without him, I would not have known how strong I can really be.
This year, my health is awesome! I started regular exercise this past July and I am addicted now because I am really seeing results! I have not been on medication for over 6mths now and I am so happy to say I am in remission and I feel fabulous! Eating better and exercising....helps me keep my stress levels low. I finally realized that I needed to put me first, at times. If I am not here for Eric, who will teach him how to be a well rounded man? I have to be here!
So, as I live each day, I try to work on myself and help Eric learn the morals and values of life. I know my days will definitely be hard in the future and I thank God everyday for the people in our life. I also realize that having unhealthy relationships are not good so I also work on having the best of friends around Eric and I at all times. Negative relationships will not be tolerated.
So until next time....thanks for reading =)
Wednesday, January 23, 2013
Eric "bragging rights"
 |
| January 2013, Waiting for the bus. |
Eric is doing great. No longer a toddler, no longer a preschooler, He is now a 1st grader! I am so proud at the boy that He is becoming. He works so hard to succeed and doesn't really get too frustrated. It amazes me. He is smiley, of course with a big hole now that he lost his front tooth. =) Always laughing, loves to be tickled!
Everyday I share with Eric is precious. I am so lucky to have him as my son. To teach him how to be an upstanding human being, who shows compassion in his daily life, that's what I strive for. I know there are great things in store for Eric as he progresses. We are so excited to have him making all sorts of new sounds and small words (which sometimes only I can understand, but I'll take it!)
Yes, yes....I get the bragging rights as his Mom. =)
Until next time....
Monday, January 21, 2013
The beginning....How we found out Eric had Special Needs...
REPOST
My name is Shauna. I have to say people have been telling me I should BLOG about our life with Eric for a long time now. My therapist, mostly! I really have battled with it because for one, who would want to read about our boring day to day life? Two...do I really have the time to add more to my life? Well, I decided I could make time because if what I write about our life with Eric helps only one person...I will be happy. If only one person understands where I am coming from...thats all I ask!
Let me start from the beginning....Eric was born July 30, 2006. He was great in every way! Being a first time Mom is so scary. There are so many things to worry about! Especially now that I had this new family to think about.
Pretty much for the first 14 months of his life everything was smooth. He was slow at developing but the doctors didn't seem too worried. Then, October 2007 at 8:15am Eric started having what looked like a seizure. I saw his eyes roll back and his fists were clenched. He was non responsive for about 2.5 minutes. Scared out of my mind...Mark called 911 while I stayed with Eric. 911 arrived minutes later just as Eric was coming back from the seizure. He had no fever and was healthy. Still in my pj's and had no makeup on not even shoes, the ambulance took us to Los Robles Hospital in Thousand Oaks, CA.
When we arrived Eric was alert and happy as normal. They did a CT scan and everything looked normal. They said they needed Urine from him as well. A way to get urine would be a tube in the penis or stick something called a UBAG around his penis...we chose the UBAG. They did not have a childs Ubag so they put an adult one on him. So at this time all we were waiting for was Urine from him. We waited and waited. Little stinker was holding it! We ended up waiting about 3 hrs for some urine. I checked the bag and sure enough he had finally gone...but only a tiny bit. I called a nurse and told her they were waiting for urine and that he had some now. She came in unstuck the bag...which was NOT labled by the way. She said she was gonna go get it to the lab and it shouldn't be too long. So, we waited more. Still worried what all of this meant for Eric. How would his life be with seizures. I am a worrier! A while later the Dr came in said all of his tests came back normal and discharged Eric at about 1pm. We were to follow up with his pediatrician as well as a Neurologist.
The day went by...I was worried all day for him. The seizure was scary and I was worried it would happen again. All that day my Mom came over to help. I was afraid to let Eric sleep in his room all by himself so I put him in bed with Mark. Mark is an early sleeper. I do most of my laundry, dishes, paying bills at night because of being busy with Eric during the day. So that night I decided to relax and watch my favorite soap I had TIVO'd. I have a really hard time relaxing so I consume cannabis to help. About 11pm I was sitting on the couch watching TV when the doorbell rang and a loud knock at the door. I tried to ignore it but they were not giving up. Not sure who it would be that late at night, I thought they had the wrong house. They were not giving up and after 3 times of knocking and doorbell rings I answered. It was 2 cops and a man from CPS (Child Protective Services). They insisted on coming in and stood in my entry way as I woke up Mark. They immediately seperated me and Mark and started questioning us without telling us why they were there. The guy from CPS was a true JERK. I have preivious scars from pimples on my face and dark bags under my eyes when I am tired. The CPS guys asked me if I was on Meth...and that my face looked like I was on meth. I have never done meth! There was a good cop and a bad one just like the movies.
After all the questioning they told us that Eric's Urine test at the hospital earlier came back with 3 drugs in his system. Cannabis, benzodiazopene, as well as opiates. Not only did I not know what 2 out of 3 of those things were...I told them it was wrong...there could be no way! They told me that I had to get a bag packed for Eric and he was going with them back to the hospital. I could not believe what was happening. This was crazy. Was I dreaming?! Mark packed a bag for Eric as I had to put the carseat in the CPS guys car. It was the hardest thing I have ever had to do. Give my son to these strangers that thought I was a drug addict! I got a ticket for the cannabis.
They took him back to the hospital and did another urine test. Only this time....it came back clean! Only 14 hrs later, there is no way they could have been gone that fast! CPS guy called me from the hospital and told us about the clean test. At that point he should have stopped all of what was happening but he didn't. He proceeded to ask Mark if he had put his own urine in the bag so that we wouldn't have to wait anymore. The CPS guy was so stupid he couldn't figure it out! That was the longest night of my life. I did not sleep....just cried! He took Eric to a Foster home until we had figured everything out.
In the meantime, Mark and I got lawyers. We met a lawyer that next day and told her everything. She advised us that Mark and I should each have a lawyer since Mark was not endulging in cannabis we were gonna try and get them to release Eric to Mark. So now that we had 2 lawyers we had a lot of work to do. We were worried that they would place Eric in a Foster home permanently. We were working hard to get CPS to release Eric to my Aunt and Uncle who lived near. After a day and a half in Foster care...Eric was released to my Aunt and Uncle. We were not allowed to see him until we went to court which was in a couple days.
We went to court and it was crazy. We felt so wierd being in a family court. We saw many people there of many races and thought "Why are we here?!" That day the judge questioned the 2 drug tests to the counsel. The hospital obviously mixed up the urine. The judge decided we would come back in 6 weeks. In the meantime, she gave Mark custody and I was able to live there still but I was not allowed to be alone with my son. I always had to have someone with me and Eric. Mark had just started working from home luckily. We were pretty much stuck at the house. She told us to do random drug testing. Which was about 40 minutes away...if we actually had jobs, we probably would have been fired because the drug testing was set up to make you fail. I had to pee in front of this lady! So awkward! Our lawyer advised us to do this parenting class...which was a complete JOKE! Mark and I were the ONLY married couple in the parenting class. As well as he recommended I go to see a MFT (Marriage and Family Therapist). This is how I met my Therapist of 5 years.
We did everything we were asked. These lawyers cost us $40,000 that we did not have. Luckily we didn't have any Credit Card debt..so we had to charge most of it on the cards. It was the hardest time in our life! We had a CPS person assigned to us and she came every 2 weeks like clockwork. CPS even tried to pull a fast one on us...They had called and said someone had called and gave them a tip that we were still using drugs. We called our lawyer immediately and she came for our meeting with CPS...CPS is a JOKE!!! Do they even help anyone?? We went to mediation and even the mediator said she didn't think there was a deal to be made. We were not settling for anything less than having our son back and all of this going away! After 5 months of hell and deep soul searching...CPS dropped the case they day it was supposed to go to trial! We were ready for Trial. They closed the case! They FINALLY realized they had this one wrong! Los Robles Hospital mixed up the urine...so this was all their fault! We could finally focus on WHY our son was having seizures and try to help instead of fight with the courts! Eric was diagnosed with Cerebral Palsy as well as seizures shortly after. Now we can begin to focus on Eric more. Get him what he needs.
My name is Shauna. I have to say people have been telling me I should BLOG about our life with Eric for a long time now. My therapist, mostly! I really have battled with it because for one, who would want to read about our boring day to day life? Two...do I really have the time to add more to my life? Well, I decided I could make time because if what I write about our life with Eric helps only one person...I will be happy. If only one person understands where I am coming from...thats all I ask!
Let me start from the beginning....Eric was born July 30, 2006. He was great in every way! Being a first time Mom is so scary. There are so many things to worry about! Especially now that I had this new family to think about.
Pretty much for the first 14 months of his life everything was smooth. He was slow at developing but the doctors didn't seem too worried. Then, October 2007 at 8:15am Eric started having what looked like a seizure. I saw his eyes roll back and his fists were clenched. He was non responsive for about 2.5 minutes. Scared out of my mind...Mark called 911 while I stayed with Eric. 911 arrived minutes later just as Eric was coming back from the seizure. He had no fever and was healthy. Still in my pj's and had no makeup on not even shoes, the ambulance took us to Los Robles Hospital in Thousand Oaks, CA.
When we arrived Eric was alert and happy as normal. They did a CT scan and everything looked normal. They said they needed Urine from him as well. A way to get urine would be a tube in the penis or stick something called a UBAG around his penis...we chose the UBAG. They did not have a childs Ubag so they put an adult one on him. So at this time all we were waiting for was Urine from him. We waited and waited. Little stinker was holding it! We ended up waiting about 3 hrs for some urine. I checked the bag and sure enough he had finally gone...but only a tiny bit. I called a nurse and told her they were waiting for urine and that he had some now. She came in unstuck the bag...which was NOT labled by the way. She said she was gonna go get it to the lab and it shouldn't be too long. So, we waited more. Still worried what all of this meant for Eric. How would his life be with seizures. I am a worrier! A while later the Dr came in said all of his tests came back normal and discharged Eric at about 1pm. We were to follow up with his pediatrician as well as a Neurologist.
The day went by...I was worried all day for him. The seizure was scary and I was worried it would happen again. All that day my Mom came over to help. I was afraid to let Eric sleep in his room all by himself so I put him in bed with Mark. Mark is an early sleeper. I do most of my laundry, dishes, paying bills at night because of being busy with Eric during the day. So that night I decided to relax and watch my favorite soap I had TIVO'd. I have a really hard time relaxing so I consume cannabis to help. About 11pm I was sitting on the couch watching TV when the doorbell rang and a loud knock at the door. I tried to ignore it but they were not giving up. Not sure who it would be that late at night, I thought they had the wrong house. They were not giving up and after 3 times of knocking and doorbell rings I answered. It was 2 cops and a man from CPS (Child Protective Services). They insisted on coming in and stood in my entry way as I woke up Mark. They immediately seperated me and Mark and started questioning us without telling us why they were there. The guy from CPS was a true JERK. I have preivious scars from pimples on my face and dark bags under my eyes when I am tired. The CPS guys asked me if I was on Meth...and that my face looked like I was on meth. I have never done meth! There was a good cop and a bad one just like the movies.
After all the questioning they told us that Eric's Urine test at the hospital earlier came back with 3 drugs in his system. Cannabis, benzodiazopene, as well as opiates. Not only did I not know what 2 out of 3 of those things were...I told them it was wrong...there could be no way! They told me that I had to get a bag packed for Eric and he was going with them back to the hospital. I could not believe what was happening. This was crazy. Was I dreaming?! Mark packed a bag for Eric as I had to put the carseat in the CPS guys car. It was the hardest thing I have ever had to do. Give my son to these strangers that thought I was a drug addict! I got a ticket for the cannabis.
They took him back to the hospital and did another urine test. Only this time....it came back clean! Only 14 hrs later, there is no way they could have been gone that fast! CPS guy called me from the hospital and told us about the clean test. At that point he should have stopped all of what was happening but he didn't. He proceeded to ask Mark if he had put his own urine in the bag so that we wouldn't have to wait anymore. The CPS guy was so stupid he couldn't figure it out! That was the longest night of my life. I did not sleep....just cried! He took Eric to a Foster home until we had figured everything out.
In the meantime, Mark and I got lawyers. We met a lawyer that next day and told her everything. She advised us that Mark and I should each have a lawyer since Mark was not endulging in cannabis we were gonna try and get them to release Eric to Mark. So now that we had 2 lawyers we had a lot of work to do. We were worried that they would place Eric in a Foster home permanently. We were working hard to get CPS to release Eric to my Aunt and Uncle who lived near. After a day and a half in Foster care...Eric was released to my Aunt and Uncle. We were not allowed to see him until we went to court which was in a couple days.
We went to court and it was crazy. We felt so wierd being in a family court. We saw many people there of many races and thought "Why are we here?!" That day the judge questioned the 2 drug tests to the counsel. The hospital obviously mixed up the urine. The judge decided we would come back in 6 weeks. In the meantime, she gave Mark custody and I was able to live there still but I was not allowed to be alone with my son. I always had to have someone with me and Eric. Mark had just started working from home luckily. We were pretty much stuck at the house. She told us to do random drug testing. Which was about 40 minutes away...if we actually had jobs, we probably would have been fired because the drug testing was set up to make you fail. I had to pee in front of this lady! So awkward! Our lawyer advised us to do this parenting class...which was a complete JOKE! Mark and I were the ONLY married couple in the parenting class. As well as he recommended I go to see a MFT (Marriage and Family Therapist). This is how I met my Therapist of 5 years.
We did everything we were asked. These lawyers cost us $40,000 that we did not have. Luckily we didn't have any Credit Card debt..so we had to charge most of it on the cards. It was the hardest time in our life! We had a CPS person assigned to us and she came every 2 weeks like clockwork. CPS even tried to pull a fast one on us...They had called and said someone had called and gave them a tip that we were still using drugs. We called our lawyer immediately and she came for our meeting with CPS...CPS is a JOKE!!! Do they even help anyone?? We went to mediation and even the mediator said she didn't think there was a deal to be made. We were not settling for anything less than having our son back and all of this going away! After 5 months of hell and deep soul searching...CPS dropped the case they day it was supposed to go to trial! We were ready for Trial. They closed the case! They FINALLY realized they had this one wrong! Los Robles Hospital mixed up the urine...so this was all their fault! We could finally focus on WHY our son was having seizures and try to help instead of fight with the courts! Eric was diagnosed with Cerebral Palsy as well as seizures shortly after. Now we can begin to focus on Eric more. Get him what he needs.
Writer's Block
I know it has been WAY too long since my last post. I don't even really know where to begin. How do I write details about the past 2 years when I can't even remember things from yesterday?
Let me start by saying the last 2 years have been the wildest ride of my life. Some good things and some bad things have come into our life, mostly good. We have been back from the Philippines for over a year now. Eric is doing Awesome!!! He is doing great in school. They keep him busy with tons of Speech therapy, Occupational therapy, Physical therapy, adaptive PE, plus they work so hard on compliance with him. I can't even explain how lucky I feel that he has been doing so great. It really does take a "Village" to raise a Special Needs Child!
Unfortunately, many of you know that my marriage has ended. It has been the hardest part of my life but I am so blessed that I have learned who I really am through all of it. I am a strong, compassionate, loving person and I take pride in the person I am. I thank Eric everyday for teaching me about what life is really about. I have NO regrets and still truly believe that "everything happens for a reason."
Thank you all for reading and following my blog. Anything I write is in hopes that it may help someone either in their own life, or to help them understand a Child With Special Needs a little bit more. =)
Til next time....
(I promise I will be writing more)
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