It's been so long since I've updated that it's almost overwhelming to try to recap all that has changed and been achieved in the past several months. Somewhere in there we switched our speech therapist and started asd preschool. 5 days a week 3 hours a day and what an amazing program and staff. We noticed changes from the first day and continue to still. Since H has school every morning we have had to switch therapy to the afternoon's and with nap etc it's hard. Little brother has sort of an unfair deal with spending his whole day in the car or a waiting room. I only hope that he is OK with anything he missed out on later, knowing that he traded some things so that he could have a perfect brother. We are in speech 2 days per week and ot 2 days, play tutor and volunteer time the other days and music therapy just started. The plate is full but the results are major. Insurance cut off several months before last year ended and it was extremely difficult to pay out of pocket but happy to say Jan 1 has come and insurance starts over. Too bad his new slp who I adore does not take insurance, is one of the highest in town and I want to add a 2nd day with her. Money isn't a factor in this game though it just appears when it's needed to help get him caught up.
H is labeling a ton, he has cut back since he was saying more but his engagement is through the roof and he is completely in tuned with and aware of others around him. Everyone on his team has noticed this difference. It's amazing to experience it. He laughs at my silly dances or his aunts little clapping peek a boo games. He likes doing photo shoots of his wind up toys with my cell phone and viewing the pictures later. His receptive language has come so drastically far that today when his slp said that he is so far ahead receptively,I almost fell off of my chair. This the kid who was 2 yrs behind when he was only 18 mos old!! Today his slp put random pictures on the floor and gave him duplicates to match them up. He completed this task, followed other simple commands and engaged completely in her games with very minimal disinterest. The whole time I'm thinking to myself, what would I have done for any or all of this a year and a half ago when we started this mission.
I know where we are going and know that we have a long road ahead but can't believe we are actually here. The teachers and therapists still run out to tell me about the wonderful things he did that day and they all say so what if he is taking his time learning to talk, he is engaged and in to people and social and amazing. So many people lately have said there is so much in there we just need to get it out here. I describe it by saying that it's finally coming through we just have a slow leak. They all agree. I adore the new speech therapist and her techniques. She has worked with some of the kids I know with the best success stories and that alone makes it fun to get her input but her ideas are just so creative and effective and I'm excited to watch her get the results.
This is such an amazing kid who has come so far and has already made me so proud. I tell him every night that he's the perfect son for me. Even his pretend play skills are evolving and he is aware of and often annoyed with his baby brother. His brother is by far the best therapy I ever could have gotten for him. I should rent him out by the hour. This summer I will put him in a regular pre school camp that has an aide for special needs kids. I wouldn't be suprised but would be thrilled if he did so well that he didn't need his aide, or even if he didn't need her next yr. We aren't ready to potty train, his body isn't ready anyway, so the aide needs to be there for diapers at least. I always say that I cried hysterically at his first birthday , his 2nd I was proud and excited with progress his 3rd I was amazed and his 4th he's going to sing happy birthday with us. The expectation is that by his 5th he will have lost his diagnosis. How well rounded this kid will be because of all of his interventions. That 5th party will be a blow out bash!
I'm so grateful that we chose the path we did and the therapists and team we have are so invested in this. I have no doubt about our future and I'm anxiously waiting the arrival of language. Functional language where he can tell me what he wants and needs. This asd road is long and rough and some days (especially the last 2 where he is up for 3 hr stretches at a time over night) are harder than others but the progress and the possibilites are unbeliveable. I can't wait to see where this path ends and where the new one begins
Friday, January 15, 2010
Friday, July 10, 2009
Deep Dark Secrets
When I found out my son had ASD I googled every variation of any term that sounded like autism could be conquered. Overcoming autism was a favorite and so of course I stumbled upon the book title and a year later I'm finally reading it. Life is hard right this moment and so this book is half read and spends its days hidden inside my tote bag purse. I bring it up at night, read 2 pages and repeat the hiding in purse routine each morning. The goal is to get a minute alone all day to read but not get caught with the title showing so its hidden under a diaper or whatever.
This is sort of a mirror scenario of my life in the closet. We have come way out by our standards by sending letters to friends and fam encoraging them to walk for our cause. We just didn't specify a dx in our cause info, symptoms instead.
Life is exhausting and trying right now. You have a special needs child that should be your max quota of trials but instead you get to deal with insurance and lack of funds etc. The payoff though is the constant and wonderful changes we get to see in our baby boy, every single day. Life is hard but its good. Let it get even better
This is sort of a mirror scenario of my life in the closet. We have come way out by our standards by sending letters to friends and fam encoraging them to walk for our cause. We just didn't specify a dx in our cause info, symptoms instead.
Life is exhausting and trying right now. You have a special needs child that should be your max quota of trials but instead you get to deal with insurance and lack of funds etc. The payoff though is the constant and wonderful changes we get to see in our baby boy, every single day. Life is hard but its good. Let it get even better
Thursday, June 25, 2009
so tired
It's just so much work. We have increased therapy for the summer and I'm so excited for the progress but it is only week one and I'm drained. We started brushing and cut out theraputic listening until we are done in a couple weeks. For once we have something with an end date. Everything else in our world is until its done..I love the changes I'm starting to see and the drastic ones I have seen all along but it is SO MUCH WORK!!
Its not only the driving, coordinating, particiating, childcare organizing, its also the walls you have to constantly walk into...
Since insurance ran out and our estimated date was off, I spent all my time waiting for their answer where in hindsight I wish I'd been applying for grants.
So far Elks club looks the most promising and they are such generous people. They have told me they are still unsure about how much they can give me but will do their best to help. No one else has said that! No one has meant it.
We submitted to the disabled children insurance or something on Monday but she didn't submit it for review until today, thursday so wait we must. 2 charities who seemed promising haven't responded to me and some of the organizations I have contacted,have representatives who literally scare me. They are all nice but so ignorant that its almost too much to take.
One referred me the local RDI freak who I had contaced months ago. His program wasn't for us and he was a flake. She also proceeded to tell me about the conputer that communicates for you. This after I explained that my VERBAL son needs speech therapy. One asked if I had heard of the play program. She meant the project so I asked her if she wanted me to spend an additional 390 per month. She thought they gave charity,,!? Another who I was way off in contacting anyway since she is for families of law enforcement, said oh with that dx you won't find much. That sucks!
As soon as I'm done getting my kid caught up I'm going to start a charity and raise money from here to forever because it is unnaceptable that ignorance is allowed to remain front and center. Too tired right now but not forever!
Its not only the driving, coordinating, particiating, childcare organizing, its also the walls you have to constantly walk into...
Since insurance ran out and our estimated date was off, I spent all my time waiting for their answer where in hindsight I wish I'd been applying for grants.
So far Elks club looks the most promising and they are such generous people. They have told me they are still unsure about how much they can give me but will do their best to help. No one else has said that! No one has meant it.
We submitted to the disabled children insurance or something on Monday but she didn't submit it for review until today, thursday so wait we must. 2 charities who seemed promising haven't responded to me and some of the organizations I have contacted,have representatives who literally scare me. They are all nice but so ignorant that its almost too much to take.
One referred me the local RDI freak who I had contaced months ago. His program wasn't for us and he was a flake. She also proceeded to tell me about the conputer that communicates for you. This after I explained that my VERBAL son needs speech therapy. One asked if I had heard of the play program. She meant the project so I asked her if she wanted me to spend an additional 390 per month. She thought they gave charity,,!? Another who I was way off in contacting anyway since she is for families of law enforcement, said oh with that dx you won't find much. That sucks!
As soon as I'm done getting my kid caught up I'm going to start a charity and raise money from here to forever because it is unnaceptable that ignorance is allowed to remain front and center. Too tired right now but not forever!
Tuesday, June 16, 2009
when life gives ya lemons
We finally got a call from HOUR today. The rep was really sweet and said we don't have to pay back all the old therapy ( relief) but we also don't get any additional visits (scary). Like my new friend DGG says, most of us are spending our kids college fund and our parents retirement fund on our kids and their therapy. Seeing as how we don't have said fund set up, I had hoped for more coverage. Maybe after all of that awful appeal drama, this was a way to soften the blow of denial.
I'm blessed more than most. We don't want to pay for therapy nor do we want to have to go for that matter, but we certainly aren't about to cut back and so the generosity of my family is overwhelming. We don't want to take their money and we want to be able to swing it on our own until our year starts over. Our fingers are crossed for success and wealth between the two of us so we can do it on our own. Its indescribable though to know that they are there to catch us if we can't swing it. Blessed.
When life gives ya lemons, eat candy.
I'm blessed more than most. We don't want to pay for therapy nor do we want to have to go for that matter, but we certainly aren't about to cut back and so the generosity of my family is overwhelming. We don't want to take their money and we want to be able to swing it on our own until our year starts over. Our fingers are crossed for success and wealth between the two of us so we can do it on our own. Its indescribable though to know that they are there to catch us if we can't swing it. Blessed.
When life gives ya lemons, eat candy.
Saturday, June 13, 2009
starting now
I'm so excited to find that I can post from my phone! The past few weeks and specifically days, I have been trying to get into SECRET mode and reallt visualize what we need and want with this insurance outcome. I find that I'm still so putoff and angry with the people and the process I suffered through that that creeps up on me when I'm trying to be positive and ask for what we need and want. I have decided to think of "H" from now on when those thoughts creep up because that is the way for me to instantly smile from joy and move back to positive outlook and visualization. Here is what I'm asking for and believing we are getting and have because its the best thing for us and what we need. I'm not too spiritual but this is what.we.need!
H R will call me Monday and tell me that like she suggested last week, we simply need our therapy offices to re-bill our claims under a challenged child code somehow vs a preventative. This is not prevention its survival and we aren't treating autism here we are treating delays. We will be able to go to OT twice per week and PT every other week because the coverage we need will be provided.
We will be covered continually for our therapy and so all we will pay for now is our PLAY tutor and that is well worth it.if you ask you receive and so this coverage to help get my son even further along than he already is and cover and pay for past,present and future therapy, is crucial and so I'm asking for the coverage and the support and for the very best outcome for our son. Asking and receiving!
H R will call me Monday and tell me that like she suggested last week, we simply need our therapy offices to re-bill our claims under a challenged child code somehow vs a preventative. This is not prevention its survival and we aren't treating autism here we are treating delays. We will be able to go to OT twice per week and PT every other week because the coverage we need will be provided.
We will be covered continually for our therapy and so all we will pay for now is our PLAY tutor and that is well worth it.if you ask you receive and so this coverage to help get my son even further along than he already is and cover and pay for past,present and future therapy, is crucial and so I'm asking for the coverage and the support and for the very best outcome for our son. Asking and receiving!
Thursday, June 11, 2009
As of lately
Back to moms of asd children home
These past few weeks have been hard for me. Sad and hard..
I thought I was being proactive. I really thought I was making a great choice. I knew I had 6o combined visits for speech, ot and pt. I want more. Lets be real, 2 visits of speech per week and one OT hardly gets you to the end of the year if you only have 60. I want PT and my 2nd OT visit each week, where does this get me? March>?! I did the work, I had wonderful letters written by our therapists, I gathered all of the reports, I wrote a wonderful letter. The appeal was solid. 31 days after they received my submission they told me they needed more items and only after I called in several times asking for an update. I got everything in immediately. 20 days later after I called in so mannnny times because my representative from hell told me time and again that she would call me for updates or on specific days, only to be out that day or just not call or take my call, I finally got through. She had an answer back from the RN which I had learned from a customer service supervisor who finally took my 999th call. She said I have an answer, it's on my desk, but I can't read it, it's illegible. SHE TOOK 20 DAYS COULD SHE MAYBE HAVE TYPED IT OUT FOR HER?? It took 5 additional days to get the answer and when she did get it, she barely understood it enough to explain it to me. They re-requested RX's that I had provided just weeks before and then wanted a letter from my therapists or Dr. saying that since my visits are not exhausted yet, how do we know he will need more therapy. I said how do I know that my son who does not speak, won't speak the language fluently in 3 weeks time????? Just a flipping guess~!!!!!! I had the letter written and forwarded it on. I called in a bunch more times to see how it went. I knew it was going to the Medical Doctor specializing in speech. That made me happy, someone with a brain and a direct knowledge... I now know that said medical board that I originally pictured as a sophisticated group of professionals was simply a bunch of chimpanzees throwing fruit and paper around. This was a mind fu*k and a gut fu*k. The whole process was disgusting, my rep was disgusting her behavior and lack of communication and service but most of all what she said to me the one time she finally called.
I was waiting in the doctor's office for our appointment and she called and said, not only are we denying your appeal, but we are going to review every claim we have payed so far because your son is under the age of 6.WTF!!!! I told her how archaic that was and who in the world waits until 6?! child neglect anyone? She said a rep who works with my husbands office would contact me.. I said I'm not worried, I 'll go to court forever , we had pre-approval and our policy does not have an age description written in the verbiage. I had to go because we were called in for our appointment but when I tried to call later to find out exactly why we were denied, she wouldn't take the call saying that she was done with the case. I want to fax a blank page with only the word KARMA written on it because Karma is a bitch and I fear for her... If ever a Karma-gram was called for. Maybe I'll send her a pack of Karma-grams. I still haven't received a call from the rep or the letter stating our denial. It's clear to me and many others that she is mad at me and so this is her effort after the choice words I used on the day that I lost my cool. Nice of the other reps to share my words with her.. In hindsight I'm glad they did.
I decided though that our life is no longer on hold because of them . I set up our pt eval and she said that he is functioning at an 18 month level. Not awful but not great. I think she said it well when she said that no one has suggested pt to us because the other challanges are so much more in your face. I have set up a 2nd ot every other week on the opposite week of our every other pt. I found this amazing play tutor from a friend who met my son for 2.5 minutes but relayed a message through my sister who knows not much about all of this (*yuck) saying she knows this great gal. I didn't love that she knew after seeing him for so little time but like my dad so bluntly said ;) she has a ton of kids and if you don't think people can see it get with the program. ouch! He is very supportive and generally a bit more couth. Now that the burn has subsided, I think it was good to hear it even though I'm sure if I hadn't caught him in a stressful moment at the office, he woulld have said it much differently. The play tutor was WONDERFUL, I hired her twice a week. Packing it in this summer since there are zero camps in this town for anyone under 3. With my spare time some day in 20 yrs, maybe I'll start a camp for special needs under 3. speech at least! Not sure where the money is coming from for all of this and not sure what will be with insurance since M's HR rep has been working on it for us for going on 2 weeks and still can't get a call back, ( LOVE INSURACE CO'S) but if I have to work or cutback so be it. I 'm not letting them decide how well my son does. We got his schedule for early on school program next year and I can't wait until he starts! I've heard wonderful things.
He is sick yet again, basically 2 mos straight. Up all night last night. I'm ready for a new beginning and whoever is effing with my kid to leave him the eff alone!! I feel more together now and ready to deal. The broken collar bone, inhaler etc etc etc etc. It's hard enough having a kid on the spectrum so I'm sick of the extras but I'm ready to take them all on now. Be even more ready after I sleep!
These past few weeks have been hard for me. Sad and hard..
I thought I was being proactive. I really thought I was making a great choice. I knew I had 6o combined visits for speech, ot and pt. I want more. Lets be real, 2 visits of speech per week and one OT hardly gets you to the end of the year if you only have 60. I want PT and my 2nd OT visit each week, where does this get me? March>?! I did the work, I had wonderful letters written by our therapists, I gathered all of the reports, I wrote a wonderful letter. The appeal was solid. 31 days after they received my submission they told me they needed more items and only after I called in several times asking for an update. I got everything in immediately. 20 days later after I called in so mannnny times because my representative from hell told me time and again that she would call me for updates or on specific days, only to be out that day or just not call or take my call, I finally got through. She had an answer back from the RN which I had learned from a customer service supervisor who finally took my 999th call. She said I have an answer, it's on my desk, but I can't read it, it's illegible. SHE TOOK 20 DAYS COULD SHE MAYBE HAVE TYPED IT OUT FOR HER?? It took 5 additional days to get the answer and when she did get it, she barely understood it enough to explain it to me. They re-requested RX's that I had provided just weeks before and then wanted a letter from my therapists or Dr. saying that since my visits are not exhausted yet, how do we know he will need more therapy. I said how do I know that my son who does not speak, won't speak the language fluently in 3 weeks time????? Just a flipping guess~!!!!!! I had the letter written and forwarded it on. I called in a bunch more times to see how it went. I knew it was going to the Medical Doctor specializing in speech. That made me happy, someone with a brain and a direct knowledge... I now know that said medical board that I originally pictured as a sophisticated group of professionals was simply a bunch of chimpanzees throwing fruit and paper around. This was a mind fu*k and a gut fu*k. The whole process was disgusting, my rep was disgusting her behavior and lack of communication and service but most of all what she said to me the one time she finally called.
I was waiting in the doctor's office for our appointment and she called and said, not only are we denying your appeal, but we are going to review every claim we have payed so far because your son is under the age of 6.WTF!!!! I told her how archaic that was and who in the world waits until 6?! child neglect anyone? She said a rep who works with my husbands office would contact me.. I said I'm not worried, I 'll go to court forever , we had pre-approval and our policy does not have an age description written in the verbiage. I had to go because we were called in for our appointment but when I tried to call later to find out exactly why we were denied, she wouldn't take the call saying that she was done with the case. I want to fax a blank page with only the word KARMA written on it because Karma is a bitch and I fear for her... If ever a Karma-gram was called for. Maybe I'll send her a pack of Karma-grams. I still haven't received a call from the rep or the letter stating our denial. It's clear to me and many others that she is mad at me and so this is her effort after the choice words I used on the day that I lost my cool. Nice of the other reps to share my words with her.. In hindsight I'm glad they did.
I decided though that our life is no longer on hold because of them . I set up our pt eval and she said that he is functioning at an 18 month level. Not awful but not great. I think she said it well when she said that no one has suggested pt to us because the other challanges are so much more in your face. I have set up a 2nd ot every other week on the opposite week of our every other pt. I found this amazing play tutor from a friend who met my son for 2.5 minutes but relayed a message through my sister who knows not much about all of this (*yuck) saying she knows this great gal. I didn't love that she knew after seeing him for so little time but like my dad so bluntly said ;) she has a ton of kids and if you don't think people can see it get with the program. ouch! He is very supportive and generally a bit more couth. Now that the burn has subsided, I think it was good to hear it even though I'm sure if I hadn't caught him in a stressful moment at the office, he woulld have said it much differently. The play tutor was WONDERFUL, I hired her twice a week. Packing it in this summer since there are zero camps in this town for anyone under 3. With my spare time some day in 20 yrs, maybe I'll start a camp for special needs under 3. speech at least! Not sure where the money is coming from for all of this and not sure what will be with insurance since M's HR rep has been working on it for us for going on 2 weeks and still can't get a call back, ( LOVE INSURACE CO'S) but if I have to work or cutback so be it. I 'm not letting them decide how well my son does. We got his schedule for early on school program next year and I can't wait until he starts! I've heard wonderful things.
He is sick yet again, basically 2 mos straight. Up all night last night. I'm ready for a new beginning and whoever is effing with my kid to leave him the eff alone!! I feel more together now and ready to deal. The broken collar bone, inhaler etc etc etc etc. It's hard enough having a kid on the spectrum so I'm sick of the extras but I'm ready to take them all on now. Be even more ready after I sleep!
Saturday, May 23, 2009
Random chat blurb
Back to Moms of asd children home
I guess the way I see it is for any kid with a good prognosis, do the intervention and at the end call it autism, call it tacos, but if we can help them and make it so they can function in society, I'll do whatever I have to.
I do have a friend and her son has aspergers and he is now in first grade. He busted butt for the first several years and when he started school this year she said I'll get the aide, I 'll do this and that but lets see how first semester goes. Finally the teacher said, leave us alone your son is doing great, I wouldn't have known anything if you hadn't told us. Now, at home he prefers not to wear socks, and buys shoes as often as he can that make it so he doesn't have to wear them as he hates the seam.
So I say functional with a side of sensory .I AM IN :)
I guess the way I see it is for any kid with a good prognosis, do the intervention and at the end call it autism, call it tacos, but if we can help them and make it so they can function in society, I'll do whatever I have to.
I do have a friend and her son has aspergers and he is now in first grade. He busted butt for the first several years and when he started school this year she said I'll get the aide, I 'll do this and that but lets see how first semester goes. Finally the teacher said, leave us alone your son is doing great, I wouldn't have known anything if you hadn't told us. Now, at home he prefers not to wear socks, and buys shoes as often as he can that make it so he doesn't have to wear them as he hates the seam.
So I say functional with a side of sensory .I AM IN :)
Subscribe to:
Comments (Atom)