This topic contains 21 replies, has 4 voices, and was last updated by  V.R. Peterson 1 month, 3 weeks ago.

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  • #19389
     Colleen Steele 
    Keymaster

    When my son was diagnosed with PH a lot changed in his life. In an effort to maintain some normalcy I advocated every year with his grade school so that he could continue attending. It took a lot of effort and many times, struggle, but he managed for 5 years and graduated from 8th grade with his class. His health was seriously declining by 8th grade and he was listed for transplant, so that was the toughest year of all. If he had another year to go we would have had to transition to home schooling.

    How do you advocate for your PH child’s education? Do you have experiences and tips that you can share that might help others with this struggle?

    In my column this week I share some of my own advice.

    How to Advocate for Your PH Child’s Education

  • #19397
     Jen Cueva 
    Participant

    Incredible column, Colleen! It must have been complicated for the administrative assistant to have so many roles. I wasn’t aware that private schools don’t always have a school nurse.

    I’m happy to hear that you were just across the street, that worked out nicely.

    I find it amazing how much you educated and advocated for your son. I bet they all were aware of PH and the meds etc.

    I know that your column will help many parents. I’ll share it in the PHkids page if you haven’t, already.

    Great job and kudos, Mom! I’m sure your son appreciated all of your extra advocating.

    • #19408
       Colleen Steele 
      Keymaster

      Thanks so much Jen! The non-profit schools don’t have the same regulations and guidelines as the public school system. If it weren’t for the fact that I worked nearby I don’t think the school would have approved for him to attend there. It was just too much to ask of a school that didn’t have a nurse. He had meds to take and ice packs to change throughout the day. He missed school a lot too. That was becoming an issue near the end of his 8th grade year but we all got him through it somehow.

      Depending on insurance I think it’s possible to hire a nurse to attend school with your child but my son would rather of been home schooled than have a nurse next to him all the time.

      It’s a struggle keeping the PH kids in school. I know a lot of families who did homeschooling instead and except for one year, my son did on-line education for high school.

      Thanks for sharing the column Jen. I really hope it helps someone.

  • #19407
     Brittany Foster 
    Keymaster

    So important, Colleen! I know that when I was a kid, my mom met with the school nurse and my teacher at the beginning of the school year and discussed my heart condition with them and the fact that I may need to take days out for it. I also had the school nurse go with us on field trips but I don’t remember much more than having that set up for me at school. I had to take medications at school too so the nurse needed to know what was going on. My mom always gave information from the doctor that was easy for others to understand but more detailed for the school nurse. I’m curious how many parents had a 504 plan set up for their child, especially when they got to middle school or high school. Did you have one for your son?

    • #19409
       Colleen Steele 
      Keymaster

      Brittany, I’m willing to bet your mom went to bat for you a lot. Even with a 504 I’ve known PH parents who struggled to get their child’s school to cooperate. In the private grade school my son didn’t have a 504 but he did in high school. If anything it helped protect him from issues with his absences and help him get excused from gym. He still had to keep up with the work though and that was often hard on him. Either me or his dad would attend the field trips.

      Were you able to attend high school or did you do another option? My son attended his Sophomore year but it was a struggle with appointments and other health issues post transplant so he switched to on-line classes.

      • #19420
         Jen Cueva 
        Participant

        I agree, Colleen! I’m sure your Mom did a lot of education and advocating, having a school nurse was a plus, Brittany!

        I’m glad that you were across the street and your son was able to attend school. Yes, it’s crazy to me the differences in regulations in a state versus a private school.

        As you mention, I have heard so many parents in the PHkids group complaining and the 504 plan isn’t always so helpful. They jump through hoops all too often.It saddens me to know that so many of our PHkids cannot attend school and try to have a ” normal ” childhood. I realize it’s not easy and many parents do choose to homeschool. For some PH kids, I’m sure it’s the best option.

      • #19431
         Brittany Foster 
        Keymaster

        Colleen,
        It’s so good that the online school is an option now. It really does help make things easier and especially for college courses offered online. I really wish I knew more about these options when I was in school. High school wasn’t that hard for my health, but when I got to college my health started to take turns for the worst. I missed school towards the end of my senior year when I had to do my student teaching and ended up having to take a leave of absence and finish my student teaching the next year and also had to take a summer course that was online and in person both. The college I went to was honestly really good about all of it and all my professors were so understanding about extending deadlines. I was the type of person who NEEDED to get everything done though and always tried my best to get it done on time even though I was granted extensions so I think this really helped with the teachers having a lot of understanding and sympathy too. They knew I didn’t take advantage of it and didn’t take being there for granted. It definitely was a struggle though especially when it came to student teaching and completing all the necessary days and hours and observations.

      • #19447
         Colleen Steele 
        Keymaster

        Brittany, in my mind the most inspiring people are those who are living or have lived with PH as a child or young adult. While other young people might complain about receiving an education, students like yourself and my son have forged on despite enormous challenges. You have both more than earned every diploma that you have received. A belated congratulations on all of your academic achievements Brittany!

        Like you, my son takes his education very seriously and does his best at all times. Most of the time when educators see that they will work hard with the student to help them reach their goals no matter the challenges. My son is about to start college and he’s going to try to attend. It’s a community college near our home and right now his health is cooperating. I just pray that he can manage this because I know how much he wants to actually “go” to school.

        I know though, whatever unknowns he has to deal with, he will, just like you.

  • #19427
     V.R. Peterson 
    Participant

    Thank you for a wonderful article, Colleen! While my son wasn’t diagnosed until mid 20’s, I often wonder how I would have handled it if he had been diagnosed when the doctor said he actually got CTEPH (theoretically as a young child). I homeschooled him for other reasons from K-12, but there were church and scouting activities and camping trips, as well as the field trips and activities with our local homeschool group. I’m not sure I would’ve allowed him to go on the overnight camps, if I had known.

    • #19432
       Brittany Foster 
      Keymaster

      That’s really good that your son also had opportunities to go on field trips with others too. Were the other students home schooled for medical reasons as well? I feel like it would be good to have a program where students who are sick for longer periods of time can get a teacher to come to the house. When I worked in a public school we had the option to choose whether or not we wanted to take the opportunity to teach from home after school hours to kids if they were out for an extended amount of time for medical reasons. I always signed up for it but never got assigned to anyone. Did they have anything like that in your town or school district? Not even sure if every public school does this.

      • #19439
         V.R. Peterson 
        Participant

        As far as I knew, none of the other students were homeschooled for medical reasons. Back then, there was no help from the school district for homeschoolers, so we formed our own group, complete with weekly spelling bees, geography bees and field trips. Now, the state offers Online public school courses for homeschoolers that will earn the student a high school diploma. Things sure have changed during the last 10 years!

      • #19442
         Brittany Foster 
        Keymaster

        They definitely have changed and they are a lot more accommodating too. I feel like my parents really didn’t even think much about a 504 plan or anything when I was in school. I think that it helped that my mom was a school teacher in the district for years so the principals and teachers knew her and just understood and accepted my health conditions without much question about it. I think that now teachers also do things more “officially” so need those plans. I feel like I gave students accomodations and breaks when needed regardless of a medical condition or what was stated in their plan, but some are also so “by the books” and only do what they are supposed to. It all depends, and honestly is either the luck of the school district you’re in, the teacher they have, etc.

      • #19456
         Jen Cueva 
        Participant

        Now that mention that, Brittany. I understand that here in the Houston area, they have some teachers that will go to homes to help teach kids who may be unable to attend due to disabilities. They go out for kids who may have mental, medical and/or physical disabilities.

    • #19448
       Colleen Steele 
      Keymaster

      @mamabear007 I really appreciate your feedback on the article! As I was writing the column I was concerned about making parents who homeschool their children feel bad. I can’t stress enough how lucky I was that I practically worked at his school. If it weren’t for that I’m not sure what we would have decided. I know a lot of families who homeschool and the parents are doing an amazing job and like you shared, also manage various ways for their children to experience social interaction. But I think it was parents such as yourself who helped build the foundation for all that homeschooling has to offer a student now.

      @brittany-foster the after hour education at the homes of students is still an option, at least it was at my son’s high school. However, my son felt like it was too limited and that he wouldn’t benefit from it as much and as quickly as he wanted to. That’s when we researched the on-line schooling and that turned out to be the perfect fit for him. He could work as slowly or as quickly as he wanted. He got through a record breaking number of classes in his last year so that he could graduate with his brother.

      • #19459
         V.R. Peterson 
        Participant

        Thank you Colleen. I assure you, I wasn’t offended. That would be my MIL — she cried when we told her we were going to homeschool and said that we were going to ruin her grandchildren. I was more than happy to prove her wrong, though there were times I was very nervous about the job I was doing. I think their success reflects more on them (and their desire to learn) than me. My youngest and my oldest both have jobs that normally require a college education. They could’ve gone, but they chose to learn on the job.

        I’ll be the first to admit that homeschooling isn’t right for everyone. I guess it’s like every other life decision. Some do well with it; some prefer public or private school. No right or wrong choice, except for the individual family.

        • This reply was modified 1 month, 3 weeks ago by  V.R. Peterson.
      • #19467
         Jen Cueva 
        Participant

        Ohh so sorry @mamabear007, your MIL didn’t understand you and your kid’s capabilities. You certainly did prove her wrong. Kudos to you!

        It sounds as if both of your sons are smart young adults.

        I agree with you, homeschooling works for many, but others may not do as well. Definitely, a choice each parent must make.

      • #19496
         Brittany Foster 
        Keymaster

        That’s really great that both of your sons were motivated to learn on the job and didn’t need a college degree for it. Honestly, college isn’t for everyone and some people really are self motivated enough to succeed in life no matter what. My boyfriend has a tech certificate for automotive from a high school that he went to but didn’t go to college and now is store manager of of an auto body place and is able to make more money than most college educated with a 4 year degree.

        I don’t regret going to college for myself especially with wanting to be a special educator and knowing what I wanted to do. But now I am not working in that field and am still able to succeed at what I’m doing now. I feel thankful to be able to learn new things too and open to constantly learning.

      • #19497
         V.R. Peterson 
        Participant

        It’s awesome that your boyfriend is manager, and it’s cool that you can succeed at what you’re doing now. I think no matter who we are, life always has twists and turns that take us to different places from what we planned (and where we need to be at that specific place and time).

      • #19502
         Brittany Foster 
        Keymaster

        So true ! Nobody, whether they are “healthy” or not really truly has anything figured out, especially when it comes to careers and what they think they want to do with the rest of their life. It’s something that even my aunt who is in her 50s is still taking classes and still changing her mind on what she wants to do even though she has great jobs! If I were more physically able I feel like I would be going back to school to be some type of doctor. I always was so fascinated by the medical field and could talk about it for HOURS ! You’d think that i would be sick of it by now, but I always want to learn more about the things I have. The field of genetic testing really interests me a lot !

      • #19512
         Jen Cueva 
        Participant

        Well, said, V.R., you’re a valuable part of the forums here. I enjoy reading your helpful feedback.

      • #19501
         Colleen Steele 
        Keymaster

        Thank you for sharing your homeschooling experience! To be honest, my biggest fear I had about possibly homeschooling was how well I would do at the job. I’m sure it takes a great deal of commitment from both the student and the parents.

      • #19519
         V.R. Peterson 
        Participant

        Colleen, it takes commitment to raise a child, no matter where they go to school. It sounds like you’ve done a wonderful job with both your boys. 🧡

        • This reply was modified 1 month, 3 weeks ago by  V.R. Peterson.

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