It’s been less than one month since Kearney was officially granted acceptance into a residential school for Autism and just a few weeks since her annual IEP meeting in which our options finally presented themselves as two viable choices (residential vs. home based programming as requested). Making this decision has been the hardest thing I have had to do as a mother ever, and this month has been a difficult one. While I should be feeling simply victorious, rewarded, and relieved to have FINALLY gotten somewhere in terms of getting her the help that she has desperately needed for so long; this whole process has led to an incredible emotional twister ride. Considering the options and the potential impact on Kearney’s life, our families’ lives, and my own personal life has launched me into a tailspin of anxiety, grief, guilt and fear mixed with the contrasting feelings of hope.
This decision was incredibly confusing and painful. Before the team meeting took place and home based service hours were finally increased, I was trying to prepare myself to accept that she would probably be better served if she moved away where the “professionals” could care for her on a 24/7 basis. This shift of thought caused an instant influx of intense pangs of grief and loss, as well as fear of guilt over the inevitable trauma it would put her through, the feelings of abandonment she would endure as she struggled to understand what was happening to her world. Despite the pain, I forged forward gathering as much information about what life at the school would be like for her. I talked at length to staff at the school, to a parent of a child who has lived there for 10 years, and also made a second trip back to observe life in the home that she would live in, were she to go there. What I learned from this all validated my original determined position which was that Kearney should not have to go to a place like that unless it was absolutely necessary. After visiting there, I didn’t see it as a place that I felt Kearney needed to be, and as I place that I imagined would bring her the happiness and love that she enjoys at home. Yes she would certainly learn there, but we haven’t adequately assessed how much she can learn with a professionally supervised ABA program in her homes after school, to allow Kearney to make gains in ADL independence, community activities, and assist us in managing behavioral problems effectively. An equally important decision making issue was that her father and I had been able to make a joint commitment to both become equally involved and dedicated to making this a priority in our lives (an absolute necessity for this to work considering our joint custody arrangement). Certainly choosing to keep fighting for an effective home program, the implementation of which leaves much of the work up to the parents, was not the “easy” choice of the two but for me it was easier than agreeing to let her go at this point in time, before we’d been given the chance to give her as much help at home as we reasonably could.
So there is a long and bumpy uphill road ahead (and I am tired already!) but will recharge again and channel my energy as we begin the ascent and commit to continuing to push on, fully expecting that there will be roadblocks and detours along the way, and with the knowledge that there are acceptable alternatives out there if the road becomes truly impassible at some point along the journey.
Wednesday, October 14, 2009
Sunday, September 27, 2009
P is for Perseverence, V is for Victory, C is for Choice.
The IEP meeting- September 22, 2009.
Standing room only, 8 representatives from RCS (her current school), and one representative each from both Wachusett and Fitchburg Special Ed departments. My rejected IEP letter sat atop a pile of business to attend to as well as the development of the new IEP, and discussion of the acceptance to the May Institute from last week. The meeting was the most productive one in 10 years, and it ran over 2 hours in length. The conclusion of which is that FINALLY (after 9 months of aggressively fighting for home support services which are adequate to make a difference) the two school districts whose budget Kearney's education is supported by, have both agreed to stop making excuses, and give her what she needs. For several years we have been requesting extended school hours/ afterschool programming and have been told that the services simply did not exist. Then when Kearney started at RCS and I found out that RCS has a home consulting division, and the "unavailable" excuse was no longer acceptable, I again requested home support. This was in January of '09. After another month or so, Wachusett agreed to pay for 3 hours per month of "home consultation". Ridiculously inadequate. We were continually told that extended services would have to come from DMR. RCS and I both continued to advocate for more hours including direct services in the home (not just consultation with us). Wachusett continued to reject this and Fitchburg was not even attending the meetings at this point. Wachusett did hire a consultant to come into our homes
‘to better assess the level of her needs”. I speak about this extensively in the first several entries into this blog. This is when the recommendation for residential placement was first suggested.
This is when I began to scream about the unfairness of not providing her with any extended support services which would give her the opportunity to live successfully at home. Her right to the least restrictive environment was being trampled.
We went back to the table for another IEP meeting in July, additionally armed with my hired consultant’s recommendations for 10 hours/week of direct services in addition to 4-5 hours/month of consultation. This time Fitchburg showed up at the meeting. Wachusett balked at the need for that amount of hours but was still in favor of residential school. We left that meeting with the district reluctantly agreeing to 4 hrs/week of direct and 2 hours/month of consultation. This led to the rejected IEP and nearly 2 more months of waiting to resolve the matter. In the mean time the invitation to bring Kearney to the May Center came, and the shocking letter of acceptance the following day.
During this IEP meeting, Fitchburg’s representative quoted my own words and said “It doesn’t make sense for a child to go into a residential placement if we haven’t done everything possible to allow her to stay in her home community.” She further questioned “why was only four hours agreed upon at the last meeting?” And I should have stated “why weren’t you there at the last meeting (one of her colleagues had filled in for her). By the end of this meeting the “team” had agreed on 8 hours/week of direct services and 3 hours/month of consultation. They had also unanimously agreed to provide a bus monitor for her (another story for another time).
Talk about frustrating. While this was certainly a victory, the timing was exceedingly frustrating. We talked openly about this recent residential option and I expressed my uncertainty about which route would be the best option to meet Kearney’s needs. The fear of declining a hard to find residential opening and then not having this option at a later date has made this decision making process very stressful. I was honest about the fact that I still wanted to gather more information about the May center including doing some observation of the actual “home” that Kearney would be placed in. I expressed my concern that I feared the home services would be difficult to implement in two homes, and that Kearney’s Dad has not been actively engaged in her programming which would be a problem. We discussed how in home programming, much of the work falls on the parents to implement, even with direct service hours, there are still far more hours in which the parents are the ones providing the “direct service”. Certainly residential school would be the “easier” option for us, but whether it would be the “best” option for us/her was the very difficult question we were trying to answer.
So, in the end, after all of the stupid BS they put me through, hiring expensive consultants, rejecting IEPs, calling the board of Special Ed appeals,it seems that the previously unavailable home services, which then became available but were deemed as excessive and unjustified, are now miraculously acknowledged as both AVAILABLE and JUSTIFIED!
A big decision would need to be made but the reality was that FINALLY, one way or the other Kearney's education and life was going to improve! Perseverance has delivered a hard fought victory to be savored. We now had a choice to make between two viable options. It will be the most difficult decision to make but choice equals empowerment, and that is a really good thing.
Next blog will be all about the choice...
Standing room only, 8 representatives from RCS (her current school), and one representative each from both Wachusett and Fitchburg Special Ed departments. My rejected IEP letter sat atop a pile of business to attend to as well as the development of the new IEP, and discussion of the acceptance to the May Institute from last week. The meeting was the most productive one in 10 years, and it ran over 2 hours in length. The conclusion of which is that FINALLY (after 9 months of aggressively fighting for home support services which are adequate to make a difference) the two school districts whose budget Kearney's education is supported by, have both agreed to stop making excuses, and give her what she needs. For several years we have been requesting extended school hours/ afterschool programming and have been told that the services simply did not exist. Then when Kearney started at RCS and I found out that RCS has a home consulting division, and the "unavailable" excuse was no longer acceptable, I again requested home support. This was in January of '09. After another month or so, Wachusett agreed to pay for 3 hours per month of "home consultation". Ridiculously inadequate. We were continually told that extended services would have to come from DMR. RCS and I both continued to advocate for more hours including direct services in the home (not just consultation with us). Wachusett continued to reject this and Fitchburg was not even attending the meetings at this point. Wachusett did hire a consultant to come into our homes
‘to better assess the level of her needs”. I speak about this extensively in the first several entries into this blog. This is when the recommendation for residential placement was first suggested.
This is when I began to scream about the unfairness of not providing her with any extended support services which would give her the opportunity to live successfully at home. Her right to the least restrictive environment was being trampled.
We went back to the table for another IEP meeting in July, additionally armed with my hired consultant’s recommendations for 10 hours/week of direct services in addition to 4-5 hours/month of consultation. This time Fitchburg showed up at the meeting. Wachusett balked at the need for that amount of hours but was still in favor of residential school. We left that meeting with the district reluctantly agreeing to 4 hrs/week of direct and 2 hours/month of consultation. This led to the rejected IEP and nearly 2 more months of waiting to resolve the matter. In the mean time the invitation to bring Kearney to the May Center came, and the shocking letter of acceptance the following day.
During this IEP meeting, Fitchburg’s representative quoted my own words and said “It doesn’t make sense for a child to go into a residential placement if we haven’t done everything possible to allow her to stay in her home community.” She further questioned “why was only four hours agreed upon at the last meeting?” And I should have stated “why weren’t you there at the last meeting (one of her colleagues had filled in for her). By the end of this meeting the “team” had agreed on 8 hours/week of direct services and 3 hours/month of consultation. They had also unanimously agreed to provide a bus monitor for her (another story for another time).
Talk about frustrating. While this was certainly a victory, the timing was exceedingly frustrating. We talked openly about this recent residential option and I expressed my uncertainty about which route would be the best option to meet Kearney’s needs. The fear of declining a hard to find residential opening and then not having this option at a later date has made this decision making process very stressful. I was honest about the fact that I still wanted to gather more information about the May center including doing some observation of the actual “home” that Kearney would be placed in. I expressed my concern that I feared the home services would be difficult to implement in two homes, and that Kearney’s Dad has not been actively engaged in her programming which would be a problem. We discussed how in home programming, much of the work falls on the parents to implement, even with direct service hours, there are still far more hours in which the parents are the ones providing the “direct service”. Certainly residential school would be the “easier” option for us, but whether it would be the “best” option for us/her was the very difficult question we were trying to answer.
So, in the end, after all of the stupid BS they put me through, hiring expensive consultants, rejecting IEPs, calling the board of Special Ed appeals,it seems that the previously unavailable home services, which then became available but were deemed as excessive and unjustified, are now miraculously acknowledged as both AVAILABLE and JUSTIFIED!
A big decision would need to be made but the reality was that FINALLY, one way or the other Kearney's education and life was going to improve! Perseverance has delivered a hard fought victory to be savored. We now had a choice to make between two viable options. It will be the most difficult decision to make but choice equals empowerment, and that is a really good thing.
Next blog will be all about the choice...
Monday, September 21, 2009
The Dark Cloud of Grief
I wanted to post an entry tonight about what I've learned so far about Residential school and how my decision making process is going. My head continues to buzz incessantly. I've got so much to say, but I'm almost too upset to think clearly. Tomorrow is Kearney's IEP meeting. This was the scheduled annual meeting in which my plan was to fight for increased home programming hours. However, the acceptance offer which was extended to us from the May Institute last week has altered the trajectory of things and is sure to be the main topic of conversation. This will be highly emotional and entirely upsetting for me. I am dreading it.
I continue to become more educated about the option, weighing it against the alternative of keeping her home with some extra supports. I'm finally able to see that the custody/living arrangements that have been in place for the past several years are not working. I was expecting too much from her father and the back and forth between households has not been ideal for her. Implementing a consistent and intense home program across the two homes would never really be successful under these circumstances. Without getting into details I will just leave it at that. I can now see quite clearly that either I accept the May Institute placement, or I take on the full burden of home programming 5 days per week in my home. It would be unrealistic to assume I could do this, do it well and avoid burnout. Not to mention the toll it would take on my son, or my sanity.
That said, I'm not ready to sign on the dotted line yet. There is so much more info to be gathered, yet the grief of it all has already settled like a dark cloud over my path. When I named the blog grand theft autism this is what I meant. So much has been stolen, and I'm feeling like I'm right on the verge of losing the little bit of her that I still had. All in the name of helping her to learn how to function in our world. I'm beginning to accept that I can't swathe and protect her forever without limiting her growth. We may be lucky to have this option, but it still feels like theft to me.
I continue to become more educated about the option, weighing it against the alternative of keeping her home with some extra supports. I'm finally able to see that the custody/living arrangements that have been in place for the past several years are not working. I was expecting too much from her father and the back and forth between households has not been ideal for her. Implementing a consistent and intense home program across the two homes would never really be successful under these circumstances. Without getting into details I will just leave it at that. I can now see quite clearly that either I accept the May Institute placement, or I take on the full burden of home programming 5 days per week in my home. It would be unrealistic to assume I could do this, do it well and avoid burnout. Not to mention the toll it would take on my son, or my sanity.
That said, I'm not ready to sign on the dotted line yet. There is so much more info to be gathered, yet the grief of it all has already settled like a dark cloud over my path. When I named the blog grand theft autism this is what I meant. So much has been stolen, and I'm feeling like I'm right on the verge of losing the little bit of her that I still had. All in the name of helping her to learn how to function in our world. I'm beginning to accept that I can't swathe and protect her forever without limiting her growth. We may be lucky to have this option, but it still feels like theft to me.
Sunday, September 20, 2009
On Blogging; Sandbags Under the Eyes, and Moving Forward
On blogging-
I created this blog back in April as a way to help me work through what I knew was going to be a very difficult period. Since that fateful day when the first educational consultant looked me in the eye and in the frankest manner possible told me that my daughter's needs would be better served by her moving into a residential placement, life has been tumultuous to say the least. This was just the beginning of a shit storm to come. Next came a Grand Mal seizure followed by a couple of entries into the blog and I guess that was all I had the energy to enter. I felt I should know what I'm talking about if I'm putting my words out there for the world to read and quite frankly I was so confused by the whirlwind of emotions spinning in my head that I didn't have a thing to type that I thought would be helpful to me, or anybody else. Well, today I am still dizzily whirling but maybe that was the main point in starting this blog to begin with. To whirl less, focus more. Talk (type) it out, draw conclusions, change them later as needed. I have a right to change my mind after all. Which is exactly what I have always done, and might be doing again.
On Sandbags-
Anyone who knows me well, knows that tears flow unabashedly from my eyes. Happy tears and sad alike, I cannot hide my emotions. This morning I awoke to find the most ridiculous and obtrusive puffs of tissue jutting out from beneath my eyes; the objective proof of the subjective pain that permeated my Saturday evening at home alone without my children, as I contemplated the idea of a future with Kearney living away from us, and her home. As I type, have to strain my eyes to see the computer screen because these big puffy sandbags are seriously obscuring my vision.
On Moving Forward-
(And, Is it Possible that undying love and commitment can mean admitting that keeping your child at home in her loving home, is NOT what is best for her future???? )
So, here I pick up where the blog left off months ago....
The second educational consultant, Dr. Frank Robbins, did his evaluation 3 weeks after the first, (school district hired) consultant visited us. This one I hired myself in an effort to elicit a strong recommendation to the school district that they needed to invest in a solid home based after school program for Kearney. Having been hired by me, and knowing what I wanted from him, he did do this. However, he was also forthright in telling me that in his experience, though it can be done, it is an extremely difficult thing to implement a well coordinated, effective home program which is adequate in intensity and consistency needed by a child with such complex and demanding needs as Kearney. In home programs, even with excellent support, much of the intense work effort falls back on the parents and in this case it would fall onto two parents who are divorced and living in separate homes. Implementing a consistent and intense educational/behavioral program across 3 environments (school, home#1 and home#2) would make an already very difficult endeavor even more challenging. He told me that it would not be a bad idea to go look at residential schools and to agree to let our home school district mail out referral packets on her, since appropriate openings can take years to develop, and since we do not know if in a year or two this will be a necessity given the trajectory of Kearney's development and behavioral ebbs and flows thus far. OK, that sounds reasonable I said. We will go back to the IEP meeting, demand the 10 hour/ week home program that I desired, and agree to let them send out the referrals for residential in case that was needed in the future.
At the IEP meeting the school district balked at giving her an appropriately intense home program. We were told that if she needed such a high number of hours of service at home then what she really needs is Residential school. In the end they only agreed to 4 hours/week. This didn't begin until August, two weeks before school vacation. I sent the IEP back as partially rejected with a letter stating that I wanted the full 10 hours as outlined in Dr. Robbins report. In the meantime we went through busing hell after Wachusett cancelled it's contract with McArthy bus company and we lost an excellent and dependable driver. They signed on with Van Pool and our experience with them has been ridiculously bad (that warrants it's own blog post really), and we've already had more than our fair share of busing nightmares given the drunk bus driver incident of 2006... (again, another blog entry is required on this to adequately convey the frustration.)
While waiting to see what would transpire with the Board of Special Ed Appeals and then Kearney's upcoming annual IEP meeting and during K's busing hell, we were offered an appointment at the May Institute to tour their program and were asked to bring Kearney in to be screened because they were anticipating having an opening that they felt Kearney would be an appropriate candidate for. WHAT? First, I though that the May Institute was like NECC and did not have a chance of EVER having an opening for a student who is from outside of their day school. Second, it had only been several weeks since the referral packets were sent out when we were given this appointment. Third, they were saying that the opening would be available as early as October 1 of this year. WHAT? I have heard multiple stories of families having to wait years and years and years. Typically it also involved a huge fight with the school district to get them to agree to fund it. Here it seemed none of the presumptions above were going to apply to Kearney and I was in shock. For a month I dreaded this May Institute appointment. I wasn't ready to look at something that was an available option just yet. To relieve my own guilt, I felt a need to give the home programming at least a chance before having to consider anything like this.
I created this blog back in April as a way to help me work through what I knew was going to be a very difficult period. Since that fateful day when the first educational consultant looked me in the eye and in the frankest manner possible told me that my daughter's needs would be better served by her moving into a residential placement, life has been tumultuous to say the least. This was just the beginning of a shit storm to come. Next came a Grand Mal seizure followed by a couple of entries into the blog and I guess that was all I had the energy to enter. I felt I should know what I'm talking about if I'm putting my words out there for the world to read and quite frankly I was so confused by the whirlwind of emotions spinning in my head that I didn't have a thing to type that I thought would be helpful to me, or anybody else. Well, today I am still dizzily whirling but maybe that was the main point in starting this blog to begin with. To whirl less, focus more. Talk (type) it out, draw conclusions, change them later as needed. I have a right to change my mind after all. Which is exactly what I have always done, and might be doing again.
On Sandbags-
Anyone who knows me well, knows that tears flow unabashedly from my eyes. Happy tears and sad alike, I cannot hide my emotions. This morning I awoke to find the most ridiculous and obtrusive puffs of tissue jutting out from beneath my eyes; the objective proof of the subjective pain that permeated my Saturday evening at home alone without my children, as I contemplated the idea of a future with Kearney living away from us, and her home. As I type, have to strain my eyes to see the computer screen because these big puffy sandbags are seriously obscuring my vision.
On Moving Forward-
(And, Is it Possible that undying love and commitment can mean admitting that keeping your child at home in her loving home, is NOT what is best for her future???? )
So, here I pick up where the blog left off months ago....
The second educational consultant, Dr. Frank Robbins, did his evaluation 3 weeks after the first, (school district hired) consultant visited us. This one I hired myself in an effort to elicit a strong recommendation to the school district that they needed to invest in a solid home based after school program for Kearney. Having been hired by me, and knowing what I wanted from him, he did do this. However, he was also forthright in telling me that in his experience, though it can be done, it is an extremely difficult thing to implement a well coordinated, effective home program which is adequate in intensity and consistency needed by a child with such complex and demanding needs as Kearney. In home programs, even with excellent support, much of the intense work effort falls back on the parents and in this case it would fall onto two parents who are divorced and living in separate homes. Implementing a consistent and intense educational/behavioral program across 3 environments (school, home#1 and home#2) would make an already very difficult endeavor even more challenging. He told me that it would not be a bad idea to go look at residential schools and to agree to let our home school district mail out referral packets on her, since appropriate openings can take years to develop, and since we do not know if in a year or two this will be a necessity given the trajectory of Kearney's development and behavioral ebbs and flows thus far. OK, that sounds reasonable I said. We will go back to the IEP meeting, demand the 10 hour/ week home program that I desired, and agree to let them send out the referrals for residential in case that was needed in the future.
At the IEP meeting the school district balked at giving her an appropriately intense home program. We were told that if she needed such a high number of hours of service at home then what she really needs is Residential school. In the end they only agreed to 4 hours/week. This didn't begin until August, two weeks before school vacation. I sent the IEP back as partially rejected with a letter stating that I wanted the full 10 hours as outlined in Dr. Robbins report. In the meantime we went through busing hell after Wachusett cancelled it's contract with McArthy bus company and we lost an excellent and dependable driver. They signed on with Van Pool and our experience with them has been ridiculously bad (that warrants it's own blog post really), and we've already had more than our fair share of busing nightmares given the drunk bus driver incident of 2006... (again, another blog entry is required on this to adequately convey the frustration.)
While waiting to see what would transpire with the Board of Special Ed Appeals and then Kearney's upcoming annual IEP meeting and during K's busing hell, we were offered an appointment at the May Institute to tour their program and were asked to bring Kearney in to be screened because they were anticipating having an opening that they felt Kearney would be an appropriate candidate for. WHAT? First, I though that the May Institute was like NECC and did not have a chance of EVER having an opening for a student who is from outside of their day school. Second, it had only been several weeks since the referral packets were sent out when we were given this appointment. Third, they were saying that the opening would be available as early as October 1 of this year. WHAT? I have heard multiple stories of families having to wait years and years and years. Typically it also involved a huge fight with the school district to get them to agree to fund it. Here it seemed none of the presumptions above were going to apply to Kearney and I was in shock. For a month I dreaded this May Institute appointment. I wasn't ready to look at something that was an available option just yet. To relieve my own guilt, I felt a need to give the home programming at least a chance before having to consider anything like this.
I have to pause now to remind myself that I can pick this up where I've left off later on. For now, I leave you with the image of one of my hearts greatest joys.
Monday, May 18, 2009
Forging on
Thankfully Kearney has not had another grand mal seizure since her first on April 16th. I got a audio/visual monitor for her room which helps me to monitor her better. It's been a blessing and a curse (lost sleep for me) but is a necessity. Her neurology appointment (1st avail) is on July 30th- so in the meantime we just wait and wonder what's next.
I've had over a month now to reflect on the school's "expert" recommendation to consider placing Kearney in a residential school. As time has passed, I am more appalled that this was suggested to us as a first step as a response to my pleas for help. I am haunted and offended by some of the comments this professional made. For example, in an effort to appear empathic he expressed his condolences to me saying quote "I am so sorry for your loss". I can absolutely appreciate that comment if given in another context. However, he also said basically that it's time to let go and move on with my life. And not to feel like I've failed but realize that "nobody could do this". I recall him saying "You're young and attractive and deserve to be happy." Yes, I do deserve to be happy and the most integral aspect of my happiness relates to my role in this world as a mother. I cannot even imagine myself being happy without her here. I would be always anxious. Her lack of ability to communicate would make this especially traumatic. She could never report if anyone was hurting her or if she was being neglected. (I'm still traumatized over the drunk bus driver incident in 2006 in which she arrived home almost an hour late by a driver who was arrested for blowing a 2.8 BAL and who later admitted to stopping at the package store and mixing drinks in the bus. All things she would never have done with a child whom she knew could report her). She would be grieving but couldn't express her sadness and could not understand why she was sent away from home and the only people who love her. (When we went to Ethiopia in 2004 and left her home with my sister for 10 days she did not sleep for days and was very upset despite us doing everything possible to help her understand what was going on and trying to keep everything else in her life as consistent as possible during that time period. After this I realized how much she does depend on us and is comforted by our presence. She can tolerate short stays away from home but would definately be stressed by an extended absence.) The professional said not to view sending her away as giving up, but instead as opening new doors for her. Although, I do feel the man may have meant well even though he phrased things poorly, I definitely don't trust one person's opinion, especially the $$$ costly services are involved and when the school stands to save money if Kearney were to go into a residential school.
Kearney can certainly be very challenging and difficult (some periods in time much worse than others). This certainly imposes many limitations on my, my son's and her father's life but we have all adapted to this. Her behaviors can certainly be managed at home. Kearney knows she is loved by us and deserves to be included as part of our families as much as is possible. And this all gets me back to the original reason I sought help for her/us in the first place. I simply wanted to get her the help she needs in the form of some support in our home to help us help her more effectively. This is her right! We had an intensive home based program when she was very young and it was effective at helping me to do the best I could for her. What I'm looking for now is just an adjunct to school services not an intense program but something substantial enough to make a difference and to help/us avoid ever needing to make a more drastic change to a residential placement.
Just because she needs it, doesn't mean she'll ever get it though. Therefore, I've arranged for another professional to spend a day with her and write his own independent evaluation of her needs for services. This is a first step in establishing some parameters for her needs which are less arbitrary than simply what the school district feels they can get away with due to budgetary constraints. (Currently a piddly 3 hours per month of home consultation split between two homes). We'll see where this goes from there... I'm over the grief of hearing the R word and refocused on my original goal.
I've had over a month now to reflect on the school's "expert" recommendation to consider placing Kearney in a residential school. As time has passed, I am more appalled that this was suggested to us as a first step as a response to my pleas for help. I am haunted and offended by some of the comments this professional made. For example, in an effort to appear empathic he expressed his condolences to me saying quote "I am so sorry for your loss". I can absolutely appreciate that comment if given in another context. However, he also said basically that it's time to let go and move on with my life. And not to feel like I've failed but realize that "nobody could do this". I recall him saying "You're young and attractive and deserve to be happy." Yes, I do deserve to be happy and the most integral aspect of my happiness relates to my role in this world as a mother. I cannot even imagine myself being happy without her here. I would be always anxious. Her lack of ability to communicate would make this especially traumatic. She could never report if anyone was hurting her or if she was being neglected. (I'm still traumatized over the drunk bus driver incident in 2006 in which she arrived home almost an hour late by a driver who was arrested for blowing a 2.8 BAL and who later admitted to stopping at the package store and mixing drinks in the bus. All things she would never have done with a child whom she knew could report her). She would be grieving but couldn't express her sadness and could not understand why she was sent away from home and the only people who love her. (When we went to Ethiopia in 2004 and left her home with my sister for 10 days she did not sleep for days and was very upset despite us doing everything possible to help her understand what was going on and trying to keep everything else in her life as consistent as possible during that time period. After this I realized how much she does depend on us and is comforted by our presence. She can tolerate short stays away from home but would definately be stressed by an extended absence.) The professional said not to view sending her away as giving up, but instead as opening new doors for her. Although, I do feel the man may have meant well even though he phrased things poorly, I definitely don't trust one person's opinion, especially the $$$ costly services are involved and when the school stands to save money if Kearney were to go into a residential school.
Kearney can certainly be very challenging and difficult (some periods in time much worse than others). This certainly imposes many limitations on my, my son's and her father's life but we have all adapted to this. Her behaviors can certainly be managed at home. Kearney knows she is loved by us and deserves to be included as part of our families as much as is possible. And this all gets me back to the original reason I sought help for her/us in the first place. I simply wanted to get her the help she needs in the form of some support in our home to help us help her more effectively. This is her right! We had an intensive home based program when she was very young and it was effective at helping me to do the best I could for her. What I'm looking for now is just an adjunct to school services not an intense program but something substantial enough to make a difference and to help/us avoid ever needing to make a more drastic change to a residential placement.
Just because she needs it, doesn't mean she'll ever get it though. Therefore, I've arranged for another professional to spend a day with her and write his own independent evaluation of her needs for services. This is a first step in establishing some parameters for her needs which are less arbitrary than simply what the school district feels they can get away with due to budgetary constraints. (Currently a piddly 3 hours per month of home consultation split between two homes). We'll see where this goes from there... I'm over the grief of hearing the R word and refocused on my original goal.
Saturday, April 18, 2009
The "R" word and the "S" word
The "R" Word
Over a week ago, on April 8th, a man was sent to my home to assess Kearney's educational needs and her home environmental support needs. This home visit was prompted by my pleading with the school district to provide us with some solid home based support to help Kearney's school based interventions be carried out more consistently in the home and also to give us some direction on how to more effectively decrease problem behaviors. What we are facing however is an unwillingness by the school district to provide the funding for an effective home based program and instead a shocking recommendation that Kearney's needs would be best met in a residential school setting. Hearing this recommendation by this specialist absolutely blindsided me. "Least restrictive setting" is written into the sped laws for a reason. I always assumed that a residential placement would NEVER be proposed until all other options have been exhausted. Kearney has NEVER had any additional services beyond the 6 hour school day. No after school program, no home based program (since her initial transition from home to school at age 5), NOTHING. Given the severity of her cognitive impairment and the difficulty she has acquiring new skills and maintaining them, it has always baffled me that whenever we ask that she gets a longer school day or some other services such as an after school program for social skills building (since she can't participate in sports or brownies or any of the activities available for typical kids) we are told that these services are simply not available. As of last September, she has been attending an excellent private school that does have after school program and also has a consulting service available to provide a home based program. It all cost money though. And although Residential school is very costly, the state is obligated to share the burden with the school district for this, but not for additional home based services. Therefore, it could be less expensive for the school to send her away then to do what they can to help us keep her making progress at home. I am told to put aside my emotions and consider this from a purely pragmatic standpoint. Though I had not realized this, her age is a huge factor and that in just 1-3 years finding a good residential school placement will be considerably more difficult and then when she is over 22 finding an adult group living arrangement will be even more problematic. etc, etc etc..... Yes, these are valid points to consider. I hadn't prepared myself to be considering them this year. I thought maybe when she is 18 or so... Or when she is in her 20's or 30's or later (not at age 11). I always assumed we would keep her home as long as possible. Protect her for as long as we can.
I can go on forever about the emotional storm this has set off in my mind. Being told by a professional that "you are barely meeting her needs here," and "no one could do this alone." It was very upsetting but also what I've been saying for years and why I've been asking for help. Not for them to take her away. Even thinking about this proposal has opened up a new level of grief for me. The thought of losing what little connection I have to her even more is unbearable. But also the idea of not doing what is best for her is making it even harder for me to be unwavering in my preference to keep her home. What if the guy is right and she would make more progress and be happy in another more consistent setting. Would she be happier? A very experienced professional said to me, "for parents, the R word often inflicts more grief on parents than the A word." Since this was just one person's opinion and one who was hired by the school district who may have a financial motivation in this, his report requires a second opinion. I am relieved to have arranged for another educational evaluator (Dr. Frank Robbins- he is excellent, thorough and truly independent from the school, he will be hired by us and for Kearney, and he has done this twice before when she was younger) to come in and give an unbiased assessment of what he thinks would be best. Until then, I have to put any further thoughts of this into the back of my mind and refocus on the NOW.
The "S "Word
I can go on forever about the emotional storm this has set off in my mind. Being told by a professional that "you are barely meeting her needs here," and "no one could do this alone." It was very upsetting but also what I've been saying for years and why I've been asking for help. Not for them to take her away. Even thinking about this proposal has opened up a new level of grief for me. The thought of losing what little connection I have to her even more is unbearable. But also the idea of not doing what is best for her is making it even harder for me to be unwavering in my preference to keep her home. What if the guy is right and she would make more progress and be happy in another more consistent setting. Would she be happier? A very experienced professional said to me, "for parents, the R word often inflicts more grief on parents than the A word." Since this was just one person's opinion and one who was hired by the school district who may have a financial motivation in this, his report requires a second opinion. I am relieved to have arranged for another educational evaluator (Dr. Frank Robbins- he is excellent, thorough and truly independent from the school, he will be hired by us and for Kearney, and he has done this twice before when she was younger) to come in and give an unbiased assessment of what he thinks would be best. Until then, I have to put any further thoughts of this into the back of my mind and refocus on the NOW.
The "S "Word
That's about where I was on Weds exactly one week after the shocking visit. I spent a week crying, not sleeping, and in a daze of confusion and worry. Then I came to a moment of peace and decided to have faith that I would know what to do for her. That was Weds April 15th. On Thursday April 16th, Kearney suffered from her first Grand Mal seizure while I was blow drying her hair after a bath. Autism is a global neurological disorder and epilepsy affects about 15% of kids who are Autistic. It is more common in those who are also mentally retarded and most often a first seizure presents during puberty. Despite these facts, I wasn't prepared for this. I was in denial that this would happen to her. After the terrifying seizure (her lips turned blue and she went limp for a few moments after the convulsing in which I feared the worst) I spent the night in the ER with her at UMASS trying to comfort her through a traumatic series of bodily intrusions far beyond her comfort zone. As I lay there on the stretcher with her at 3a.m. holding her hand and stroking her back, the fear of losing her struck me intensely. I need to be there for this vulnerable being. I am her voice. Her protector. Her mother. She is like a 2 year old in an 11 year old body. A 2 year old needs her Mommy. How could I ever send her away? Who's gonna love her like me? Where does love fit into this equation? Is ABA more important? Or am I just being selfish? .....
....It has been about 36 hours since that first seizure. More than likely there are more to come. Another diagnosis lurking in the closet (epilepsy), more traumatic testing, and drugs with side effects to trial... I am overwhelmed with emotion and fueled with passion to help her.
A BCBA (certified behavioral consultant) from her private school is coming over to meet us this morning to begin helping to come up with a plan for some minimal home based services that the school district has agreed to fund at my demand. It is at least a start, though another team meeting is certain once the evaluator writes up his report recommending the R word instead. How things will proceed from here are cloudy at best. What I do know is that I am not giving up.
....It has been about 36 hours since that first seizure. More than likely there are more to come. Another diagnosis lurking in the closet (epilepsy), more traumatic testing, and drugs with side effects to trial... I am overwhelmed with emotion and fueled with passion to help her.
A BCBA (certified behavioral consultant) from her private school is coming over to meet us this morning to begin helping to come up with a plan for some minimal home based services that the school district has agreed to fund at my demand. It is at least a start, though another team meeting is certain once the evaluator writes up his report recommending the R word instead. How things will proceed from here are cloudy at best. What I do know is that I am not giving up.
Sunday, April 12, 2009
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