signed up for respite

Discussion in 'General Parenting' started by Ktllc, Feb 14, 2013.

  1. Ktllc

    Ktllc New Member

    It became clear to me that our family needs abreak after Partner had a little break down about life with V. It has been bubbling for month, but a few weeks agao, Partner just lost it and hammered V real good. V had a bloody lip. sigh... It is so not like Partner. He also hammered a classmate at school that same week (no blood there thanks Goodness!). His teacher did not even send him to the Principal as it is so much out of character and Partner took responsibility for his action. He calmly explain why and apologized.
    I had a meeting with Partner's teacher and the GC. The teacher had no idea that V is on the spectrum and that Partner was his guide since babyhood. Since Partner is so advanced academically, she often names him group leader and he helps the lower skills classmate. It is a great approach, but in Partner's case it is just too much. He needs a break. Both teacher and GC agreed and will give Partner a break for helping anyone (unless he chooses to of course). He will also be tested for AIG. The processed is launched... I feel proud but kind of weird about it. Giftedness comes with its own challenges.
    Both husband and I had a long talk with Partner about how it feels to grow up with Autism Spectrum Disorders (ASD) in the family. Partner cried a lot and we promissed to give him breaks as much as possible.
    Me, I'm on edge... there is just so much to manage. V's anxiety is picking as the school work is getting harder. I know he is doing great all things considered. But sometimes I wish we could run errands without having to print a picture schedule.
    It is becoming very clear that V will have enormous school challenges. Just today, he started writing backwards without understanding why it was wrong. He has no sight words, does not understand numbers beyond 10. Still VERY inconstitent with his alphabet and letter sounds. Extreme difficulties retaining new information. on the other hand, his Isense is really helping and he is now on top of his class in story comprehension.
    I'm not sure how respite will work, but we should have about 40 hours a month. I hope he will see it as a special time and not a punishment. They garanted that the staff/volunteers were trained with background check.
    I sometimes dream of a school specially desined for kids like V. And that we would be rich and could afford it!! Hahaha. I feel so much pressure to give him as much as I can. And yet, V is still V: litteral, anxious, routine bound, exhausted by school, loosing self-esteem at every occasion.
    I don't want to think about his challenges evryday, but yet despite trying to focus on his progress, I'm also reminded everyday that life is not easy for him and with him.
  2. InsaneCdn

    InsaneCdn Well-Known Member

    Respite might mean... having special time for Partner when others are helping with V. Will require some juggling as there's more to the family than just P and V... :D
  3. TeDo

    TeDo CD Hall of Fame

    I am very happy for you. Use the respite to the fullest of your ability. Do many of the things YOU and husband and Partner want to do without having to worry about V, if even for just a few hours. You'll have to learn to let go during that time. It will be hard since that's all you've known for so long.

    You should be very proud of Partner. He let you know what was going on and has done a great job of handling it all for so long. He deserves some Mommy and Me time, in a big way.

    As for V's skills, you're lucky. You know what they are already and he's only 5. I didn't figure them out until difficult child 1 was 13. He lost out on so many interventions that could have him in an even better place. How's the Special Education process going? The sooner you get things going and finalized, the more will be in place before things get REALLY hard in school.

    I continue to admire how far you've come. You're doing a great job and I hope you are able to pat yourself on the back sometimes. You've overcome a giant hurdle and are now on the "right" path. KUDOS Warrior Mom!!
  4. DammitJanet

    DammitJanet Well-Known Member Staff Member

  5. Bunny

    Bunny Active Member

    I'm really glad that you were able to sign up for respite. I think that this will be a good thing for everyone, especially for Partner. I know with easy child sometimes he just needs time away from difficult child and it's the same for Partner. Hopefully, V will see this as "fun time" away from the family and not as a punishment. I hope it goes well for all of you.
  6. Ktllc

    Ktllc New Member

    Janet, thanks for the link. Kind of funny, V's Occupational Therapist (OT) just mentioned this program during his last session. If we wanted to enroll V, we would have to move though... And even with finacial aid, it is still a big chunk of money! I'll discuss with husband.
    Todo, thanks for the praise. It is always nice. I know we have to take it one day at a time, and we are are on a good path. It is just not an easy one!
    The Special Education processed was launched and the 90 day count down started at the last team meeting (they made me write a writen request, so that was very good and homest on their end). But 90 days will take us all the way to May... the end of the school year. And I still don't know what services or even if he will qualify.
    I did tell V about respite and expplained itas his special time. He had a tantrum when Partner went in the truck with husband and I was trying to explain that him and Partner will do different things sometimes. They are different indivudual and that's ok. All of the 3 kids have their special time and it can not always be an exact match. Just not easy for V to understand although his frustration is partially normal sibling stuff. He just takes it to a whole different level.
  7. TerryJ2

    TerryJ2 Well-Known Member

    That's great!
    But I am so sorry that it has been hard for all of you, and that the kids continue to struggle ... and ouch! on the bloody lip. It really takes it out of everyone.
    Many hugs.
  8. buddy

    buddy New Member

    You. Are. Awesome!

    I am so happy for Partner, and this will ultimately be great for V too. Q loves his Integrated Listening Systems (ILS) time. He's always nervous at first but ends up loving it.
  9. DammitJanet

    DammitJanet Well-Known Member Staff Member

    There is another school in Raleigh that is an overnight school where they stay during the week and come home on weekends. I have to find it. I remember it from researching it with Cory. I have to find it. I just pulled that one up and didnt really read through it. I will keep looking for you. I know the place starts with a W but my mind is always mush when I am on the board in the Something like Williams School or close to it. It stops at about 8th grade though so we missed out.
  10. Ktllc

    Ktllc New Member

    I have talked with husband about this school (the one with the link) and despite the heavy price he did not say no. There is also an option in a nearby county which has a whole autism program within the public system. I have heard a couple parents saying that they are satisfied, but I would need to do more research obviously. I doubt I would want to do an overnight program in elementary school... WE both agreed that we need to keep looking but we also need to give our current school and V a bit more time.
    Everything I thought would happen is happening. I don't have a crystal ball obviously, but I know that it is only going to get worse at school. Despite having the best regular ed teacher in the world (and I truely mean it. She is extraordinary, not you regular teacher), his difficulties are big. Just imagine what it will be with an average teacher! Disaster... And I'm not saying that because I would be pessimistic. The teacher and I really do see V's individual progress. We both praise him for those progress. But compared to his peers, it is very small and slow.
  11. paperplate

    paperplate New Member

    My son was on home-instruction for a while (Autism Spectrum Disorders (ASD) & EPILEPSY), actually, still is. But a few weeks ago, I went to the school and begged them to put him back in for 2 hours a day. Math and LA only. I seriously NEED that 2hours away from him. I feel soooooo guilty, but If I crack up, I'm no good to anyone. You need some alone time. It's like being stuck on a ride and nobody will let you off. Get off for a while. Your mental health is just as important, if not more, simply because you need to care for them. It's supposed to be a world of give and take, but I think we live in the families of just 'give'.
  12. buddy

    buddy New Member

    We have two charter schools here for kids like V. They now added a high school. Wish you had that.......
  13. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Buddy, NC is very very good for autism. Not so great for everything else but for some reason they really hit that early on. I know I will get the initials wrong but it is either TEACHH or TEACCH. I have no clue what it stands for but it is supposed to be one of the early ground breaking programs and people moved here because of it. UNC-Chapel Hill and Duke have excellent programs also. Unfortunately I didnt know I had a kid on the spectrum until it was too late!

    As far as that school I was talking about that I cant remember the name of, it is in Raleigh and is supposed to be superb. Years ago I was researching everything under the sun with Cory. There wasnt a rock in NC I didnt turn over.
  14. Ktllc

    Ktllc New Member

    Ok, I didnot want to break any board rules, but here it is: V was diagnosis by TEACCH and is on the waiting list for private session.
    They are also the ones training the teachers in Autism Spectrum Disorders (ASD) at V's school. Yes, they are VERY reputable but not that easy to access. It is more of a consulting service. AT leas t, that is my understanding of it so far. It took 8 months for V to be evaluated and he has now been on their sessions waiting list since December... They are available on the phone though.
    I just feel a lot of his anxiety is triggered by a less than perfect school environment. I have good communication with the school but the bottom line: he is not learning as he should and V knows it. Having an anxiety attack over the /g/ sound is not normal. I just don't want to accept it as something bound to happen.
    I feel that if he was in an environment designed for his challenges, V would just blossom. He is such a hard worker and he wants to learn. Those are amazing skills for a 5 year old little boy. There has to be a school that can channel those skills in order to compensate for the deficits. V will require a lot of 1:1 teaching if we want him to succeed, a lot of concrete and diversified experiences.
  15. TerryJ2

    TerryJ2 Well-Known Member

    I had to look it up. :)
    So sorry it took so long for the evaluation.
    I know what you mean about having an anxiety attack about the /g/ sound. My difficult child still has meltdowns/anxiety attacks about his NILD lettering and motifs. :(