I was pretty swept away with my previous posting, so I completely forgot to mention that Jack is indeed sick - again.
Yesterday evening he spiked a fever just before dinner, and just after dinner proceeded to wretch as though he was trying to vomit. Well, apparently he was trying to vomit and has since succeeded in doing so several times today. I have just about got it down to a science now, the first time taking me by complete surprise (since he's not physcially supposed to be able to vomit) thus resulting in a change of clothes (for both of us). It seems when his fever starts to spike his propensity to vomit increases ten fold. Between doses of Motrin thing seem to quiet down, but when the dose begins to wear off, watch out. So we're trying to keep him comfortable and vomit free as aspirating during an eruption is a pretty big concern.
I am working late this evening, just trying to keep up (and failing miserably at it). Ainsley B comes home tomorrow from her two week adventure at Mum and Papa's (my parents) in Kentucky. She actually called last night to ask if she could stay another week! Imagine a six year old asking such a thing! I was flabberghasted. It would seem she's having the time of her life being the only Grandchild around....
Wednesday, July 30, 2008
The Mom at the Swings
If you've read this already, please indulge me for a few minutes. There is a very moving column/blog written by Vicki Forman. She is the mother of Evan Kamida who passed away July 24th. Today would have been his eighth birthday. He was a special needs child, and Vicki has been for some time now eloquently blogging about him, their struggles and their triumphs.
One of my dear friends sent me this. I had never, before today, heard of Evan or Vicki. But after reading her columns, blogs and the tremendous number of tributes to Evan I feel like I know her (and she me) very well. It seems we Moms are all made out of the same crazy strong material and those of us with special needs children all struggle with the same issues. Thank you to my rocks who continue to support me, the wanna-be-theres for the thought, and the gingerbreads for not wasting my time.
One of my dear friends sent me this. I had never, before today, heard of Evan or Vicki. But after reading her columns, blogs and the tremendous number of tributes to Evan I feel like I know her (and she me) very well. It seems we Moms are all made out of the same crazy strong material and those of us with special needs children all struggle with the same issues. Thank you to my rocks who continue to support me, the wanna-be-theres for the thought, and the gingerbreads for not wasting my time.
Wednesday, July 23, 2008
PACTing Up and Moving On.
On Monday I visited the PACT: World of Care Daycare center in Woodlawn. It is affiliated with the Kennedy Krieger Institute and is specifically for kids who are medically and developmentally “fragile”. This was truly a bittersweet experience for me. I met the social worker at the front desk and she gave me the obligatory tour of the general areas (which I was really impressed with) and then we saw the room that Jackson would be in. There are six beautiful children in this room, whose issues range in nature and severity. The head teacher for the room is sweet and stern – providing consistent and helpful feed back for each child – with special adaptations as needed.
Before I left the center, I knew this is where Jackson should be. So the social worker and I coordinated our calendars and scheduled his official assessment. I gave his current daycare center notice this morning that the 22nd of August will be his last day there. I think they were a little shocked – as I had given no previous indication this was coming.
This will be a really positive change for Jackson. The center is absolutely committed to supporting (in any and every way) the development of the children there. It is however, another very difficult reality to grasp.
It is really painful think of Jackson as “one of those kids” – but at this point it is the reality we must live in. I have tried to be as optimistic as possible for a very long time, believing the doctors and therapists when they tell us he will catch up. The fact of the matter is they don’t know that for sure. No one does.
I feel really selfish for even blogging about this, and as I have blogged before, I know that things for Jack could be so much worse. But lately that realization has not provided me with much comfort. Instead the realization that he will likely not lead an easy life has stricken me with a great deal of sadness. I am sad that Jack has to struggle. I am sad that he will likely have a really difficult time with school. I am sad that he will likely be limited to lifestyle and career choices. I am sad that he will likely be called names, beat up and ridiculed by people who won’t take the time to understand the challenges he faces. And while none of these difficulties are absolutes, the further behind he falls developmentally, the greater the likelihood is that they will in time become reality. Time has now become both our enemy and our friend.
Before I left the center, I knew this is where Jackson should be. So the social worker and I coordinated our calendars and scheduled his official assessment. I gave his current daycare center notice this morning that the 22nd of August will be his last day there. I think they were a little shocked – as I had given no previous indication this was coming.
This will be a really positive change for Jackson. The center is absolutely committed to supporting (in any and every way) the development of the children there. It is however, another very difficult reality to grasp.
It is really painful think of Jackson as “one of those kids” – but at this point it is the reality we must live in. I have tried to be as optimistic as possible for a very long time, believing the doctors and therapists when they tell us he will catch up. The fact of the matter is they don’t know that for sure. No one does.
I feel really selfish for even blogging about this, and as I have blogged before, I know that things for Jack could be so much worse. But lately that realization has not provided me with much comfort. Instead the realization that he will likely not lead an easy life has stricken me with a great deal of sadness. I am sad that Jack has to struggle. I am sad that he will likely have a really difficult time with school. I am sad that he will likely be limited to lifestyle and career choices. I am sad that he will likely be called names, beat up and ridiculed by people who won’t take the time to understand the challenges he faces. And while none of these difficulties are absolutes, the further behind he falls developmentally, the greater the likelihood is that they will in time become reality. Time has now become both our enemy and our friend.
Tuesday, July 15, 2008
Reality Check.
This may end up becoming more a a ramble than a true blog, but I will try my best to keep it cohesive....
Firstly, I should explain, for those of you unfamiliar with state programs, how the Infants and Toddlers Program and the Child Find Program work. Infants and Toddlers (from here on referred to as I&T) is an early intervention program for children birth to three years old. They provide all kinds of services and for the last 2+ years Jackson has been receiving most of his Occupational, Physical, Speech and Language and Cognitive Therapies through I&T. Now that he is approaching three years old (Wow!) we have to transition to the Child Find Program. Child Find (from here on referred to as CF) works through the Baltimore County school system to provide the same services. There is a team of therapists, teachers, and sometimes nurses involved in the planning and executing of services for each individual participant of the program. Whew. That was a mouthful.
Some of you may have heard of and IEP (Individualized Education Program). We are about to embark on what I'm told is a very painful and frustrating process of "writing" the IEP. Now let me be really clear, we as the parents of the child in question have very very little say about the process or the outcome for that matter. Which is why I am quietly stalking information about the IEP process, gathering along the way little morsels of knowledge to arm myself with. It seems that the people who run this process are not the most objective bunch (again this is rumor - not first hand knowledge). I have fortunately stumbled across the most invaluable resource I could have ever wished for. Another parent who has been through much of what I have been through. Our Nurse Practitioner here at work has a son that just graduated from high school who apparently has had many of the struggles that Jack now faces. She is priming and prepping me for the long arduous fight ahead. There are a lot of rather unpleasant experiences we will likely encounter along the way. Best to be as prepared as possible.
The immediate fight is the transition itself to a whole new team of therapists and educators who will evaluate Jack and his current skill level. Jack's Developmental Pediatrician at Kennedy Krieger has urged us to put him in the county preschool program for intensive five day a week therapies. That's the goal. Strangely enough he, nor I, nor Jason, really get any input on this decision. The "team" will review his most recent assessments and base their decision on those results. If we disagree with their final ruling, we can appeal this decision, taking it to court if need be.
Up until now most of our dealing with the county programs have been fine. Our service coordinators are kind and for the most part, forthcoming with the information we need to make educated decisions about Jackson's therapies. That is apparently not the case with the CF team. So I am gearing up for battle.
In the meanwhile, Jack's current physical therapist has become a problem. Over the last couple of months I have had several comments made to me regarding her demeanor towards Jackson during therapy sessions. Several parents and teachers have commented that she is “mean” to him and he is often seen screaming at the top of his lungs during sessions. I understand that a nearly three year old child can hardly be considered rational, but to hear multiple reports (with very similar descriptions) from different people is concerning. Initially I wrote it off as typical toddler resistance, however now that I am hearing the same reports from different people I have to question whether she should continue working with Jackson. Additionally, it concerns me that she does not have a normal routine / schedule for him, often emailing me the day before she wants to visit him. I doubt very seriously that there has been any work on running or jumping, and I receive very little feedback from her sessions. (There is never a yellow sheet left documenting her visit.) And in an email a few days ago, she made it pretty clear that she really doesn’t know what Jackson’s gross motor deficiencies are. It seems crazy for a professional to ask a parent what gross motor skills should be addressed at the IEP. Isn’t that why she has been working with him and assessing his progress? Fortunately for me, our current service coordinator is excessively good and was pretty upset about the situation when I sent her an email yesterday detailing the above issues. Unfortunately, it means Jackson will likely have to go without PT until he turns three, since it is summer and there are very few PTs working now, there isn't anyone to pick his session up.
Yet another issue we're working on, which had me pretty wound up a week ago, is daycare. At the current daycare center, the teachers are warm and kind, and dote on Jackson. The down side is that they don't push him. They almost pity him, and that is a huge detriment to Jack. To allow him to skate by without challenging him is doing him an enormous injustice. He needs reinforcement from his therapy sessions, from his teachers, his therapists and his family.
Well over a month ago, one of our Infants and Toddlers therapist suggested looking into PACT - a childcare center for physically and mentally disabled children. Since we're pushing for Jack to attend the county half day intensive preschool it would seem a waste to send him back to an environment that doesn't reinforce those sessions. So I contacted the PACT enrollment specialist and have made an appointment to visit. I'll go check it out next Monday and fill out yet more paperwork. But it seems to make a lot of sense - we need to give him ALL the resources we can right now, the most critical time for development, in hopes that will enable him to "catch up".
This daycare however, would be an enormous strain on me. Jason doesn't get to drop off or pick up the children because of his work schedule. I asked him the other day if he could schedule to drop off or pick up even just two days a week and he said no. "I really can't commit to that." For once I am not blaming him. I am blaming his job. The people he works with. And the people he works for. People who don't understand that having a child with developmental delays / disabilities requires time and energy from BOTH parents. People who are unbelievably petty about time off, vacation days, weekend work and holidays. When Jason tells me the hoops he has to jump through and deals he has to make so people are okay with him taking a VACATION day to help me sort through this mess, it reminds me of a greedy bunch of children swapping baseball cards. He has missed numerous appointments that he should have been at. Appointments that I needed support at. But because certain individuals will make his life at work even harder than it already is, he doesn't make it to the appointments he should. And I'm not talking about regular checkups. I'm talking about the visit to Kennedy Krieger to see the Developmental Pedicatrician who proceeded to break the news to me that Jack may likely be mildly mentally retarded. A visit that I could hardly walk away from at the end because I was so stunned. I felt like I had been smacked in the head with a 2x4. A liitle support would have done wonders for me.
I am now faced with deciding whether or not to stretch myself even further / thinner. Whether I can physically handle the drop offs, pick ups, lunch packing, sick days, doctors appointments and work. (Remarkably enough, I do still have a job.) Whether all this is worth it - will it make a difference for Jack and help him catch up or will it be too much for him to handle? Is it wise to surround him all day long with kids who are not "average", who are battling their own issues? Or would it be better to keep him at his current daycare so he can socialize with his "peers"? I have questions. Lots and lots of questions. And I've yet to find the man behind the curtain who holds all the answers....
Firstly, I should explain, for those of you unfamiliar with state programs, how the Infants and Toddlers Program and the Child Find Program work. Infants and Toddlers (from here on referred to as I&T) is an early intervention program for children birth to three years old. They provide all kinds of services and for the last 2+ years Jackson has been receiving most of his Occupational, Physical, Speech and Language and Cognitive Therapies through I&T. Now that he is approaching three years old (Wow!) we have to transition to the Child Find Program. Child Find (from here on referred to as CF) works through the Baltimore County school system to provide the same services. There is a team of therapists, teachers, and sometimes nurses involved in the planning and executing of services for each individual participant of the program. Whew. That was a mouthful.
Some of you may have heard of and IEP (Individualized Education Program). We are about to embark on what I'm told is a very painful and frustrating process of "writing" the IEP. Now let me be really clear, we as the parents of the child in question have very very little say about the process or the outcome for that matter. Which is why I am quietly stalking information about the IEP process, gathering along the way little morsels of knowledge to arm myself with. It seems that the people who run this process are not the most objective bunch (again this is rumor - not first hand knowledge). I have fortunately stumbled across the most invaluable resource I could have ever wished for. Another parent who has been through much of what I have been through. Our Nurse Practitioner here at work has a son that just graduated from high school who apparently has had many of the struggles that Jack now faces. She is priming and prepping me for the long arduous fight ahead. There are a lot of rather unpleasant experiences we will likely encounter along the way. Best to be as prepared as possible.
The immediate fight is the transition itself to a whole new team of therapists and educators who will evaluate Jack and his current skill level. Jack's Developmental Pediatrician at Kennedy Krieger has urged us to put him in the county preschool program for intensive five day a week therapies. That's the goal. Strangely enough he, nor I, nor Jason, really get any input on this decision. The "team" will review his most recent assessments and base their decision on those results. If we disagree with their final ruling, we can appeal this decision, taking it to court if need be.
Up until now most of our dealing with the county programs have been fine. Our service coordinators are kind and for the most part, forthcoming with the information we need to make educated decisions about Jackson's therapies. That is apparently not the case with the CF team. So I am gearing up for battle.
In the meanwhile, Jack's current physical therapist has become a problem. Over the last couple of months I have had several comments made to me regarding her demeanor towards Jackson during therapy sessions. Several parents and teachers have commented that she is “mean” to him and he is often seen screaming at the top of his lungs during sessions. I understand that a nearly three year old child can hardly be considered rational, but to hear multiple reports (with very similar descriptions) from different people is concerning. Initially I wrote it off as typical toddler resistance, however now that I am hearing the same reports from different people I have to question whether she should continue working with Jackson. Additionally, it concerns me that she does not have a normal routine / schedule for him, often emailing me the day before she wants to visit him. I doubt very seriously that there has been any work on running or jumping, and I receive very little feedback from her sessions. (There is never a yellow sheet left documenting her visit.) And in an email a few days ago, she made it pretty clear that she really doesn’t know what Jackson’s gross motor deficiencies are. It seems crazy for a professional to ask a parent what gross motor skills should be addressed at the IEP. Isn’t that why she has been working with him and assessing his progress? Fortunately for me, our current service coordinator is excessively good and was pretty upset about the situation when I sent her an email yesterday detailing the above issues. Unfortunately, it means Jackson will likely have to go without PT until he turns three, since it is summer and there are very few PTs working now, there isn't anyone to pick his session up.
Yet another issue we're working on, which had me pretty wound up a week ago, is daycare. At the current daycare center, the teachers are warm and kind, and dote on Jackson. The down side is that they don't push him. They almost pity him, and that is a huge detriment to Jack. To allow him to skate by without challenging him is doing him an enormous injustice. He needs reinforcement from his therapy sessions, from his teachers, his therapists and his family.
Well over a month ago, one of our Infants and Toddlers therapist suggested looking into PACT - a childcare center for physically and mentally disabled children. Since we're pushing for Jack to attend the county half day intensive preschool it would seem a waste to send him back to an environment that doesn't reinforce those sessions. So I contacted the PACT enrollment specialist and have made an appointment to visit. I'll go check it out next Monday and fill out yet more paperwork. But it seems to make a lot of sense - we need to give him ALL the resources we can right now, the most critical time for development, in hopes that will enable him to "catch up".
This daycare however, would be an enormous strain on me. Jason doesn't get to drop off or pick up the children because of his work schedule. I asked him the other day if he could schedule to drop off or pick up even just two days a week and he said no. "I really can't commit to that." For once I am not blaming him. I am blaming his job. The people he works with. And the people he works for. People who don't understand that having a child with developmental delays / disabilities requires time and energy from BOTH parents. People who are unbelievably petty about time off, vacation days, weekend work and holidays. When Jason tells me the hoops he has to jump through and deals he has to make so people are okay with him taking a VACATION day to help me sort through this mess, it reminds me of a greedy bunch of children swapping baseball cards. He has missed numerous appointments that he should have been at. Appointments that I needed support at. But because certain individuals will make his life at work even harder than it already is, he doesn't make it to the appointments he should. And I'm not talking about regular checkups. I'm talking about the visit to Kennedy Krieger to see the Developmental Pedicatrician who proceeded to break the news to me that Jack may likely be mildly mentally retarded. A visit that I could hardly walk away from at the end because I was so stunned. I felt like I had been smacked in the head with a 2x4. A liitle support would have done wonders for me.
I am now faced with deciding whether or not to stretch myself even further / thinner. Whether I can physically handle the drop offs, pick ups, lunch packing, sick days, doctors appointments and work. (Remarkably enough, I do still have a job.) Whether all this is worth it - will it make a difference for Jack and help him catch up or will it be too much for him to handle? Is it wise to surround him all day long with kids who are not "average", who are battling their own issues? Or would it be better to keep him at his current daycare so he can socialize with his "peers"? I have questions. Lots and lots of questions. And I've yet to find the man behind the curtain who holds all the answers....
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