Monday, September 10, 2007

Help! Anyone have experience with IEP?

At the end of Hoss' developmental clinic "marathon", I was handed prescriptions for OT, PT, and speech therapy that the team said he needed in addition to what he would receive in the ECDD classroom. OT once a week, PT three times a week, and speech three times a week. When I shared this information with Hoss' ECDD teacher (who I adore, by the way) she told me that the school does not "accept" assessments from the hospital and would have to do their own assessments. Further, we would not have time at his IEP meeting to "get into" discussions about such things, as we reallly needed to get his IEP signed and submitted before he started school on the 10th.

R took off of work last thursday in order to attend Hoss' IEP meeting with me - we both were unhappy with the idea that the school would not take into consideration what the clinic had to say (which included Hoss' pediatrician, btw) as well as a little put out that we were being "rushed' to get an IEP signed without an education plan that addresses Hoss needs adequately.

The meeting was...interesting. Hoss' community mental health worker, K, was there, as was Hoss' teacher, the teacher aide, and, for a brief period of time, the school speech therapist. The principal was not in attendance (strange, as an administrator is supposed to attend these, at least that has been my understanding of IEP laws), nor was there an OT or a PT in attendance.

Despite pressure to "wrap it up" as everyone had "somewhere to be", R and I kept asking questions and revisiting the clinic's assessment of Hoss and his needs. Hoss' community mental health worker also tried to gently pressure the teacher to "do better" than what she proposed: basically, no one on one speech, no one on one PT, and two fifteen minute group OT therapy sessions a month. The OT created this "plan" for Hoss without having seen him in over a year (she had observed him once, briefly, when Hoss was still in his mother's care and he was sporadically attending an Early On classroom) and without having done a proper assessment on him.

To sum it all up, after two hours, and some intense conversation, I said, firmly, "I am afraid I cannot sign this IEP. Hoss' clearly has some significant delays and clearly needs one on one attention in the areas of PT, OT, and speech."

I think I shocked everyone, including myself. Bold, really, for me to do that. But heck, the kid doesn't have anyone to stand up for him but us, and I really am NOT willing to accept the "oh he will get all he needs in the classroom along with everyone else. We don't do "one on one" here, we do everything in the classroom."

Again, I adore his teacher. I trust her completely with Hoss' care and know that she is a great teacher. I told her this. But I also know that there are 7 other special needs kids in his classroom who also have their own unique "issues" that need attention. Besides, these are 7 three year olds, simply managing a classroom of 7 three year olds is a tall order and takes up most of her time and her aide's is it they are going to adequately address the needs of each child-- especially when they are only in class on monday and wednesday's, and one friday a month?????

I realize that I could very well just back off from the school and figure out how to get Hoss to therapy sessions at the hospital. Indeed, I probably will end up taking him to the hospital for at least one of the three therapies he needs (OT, PT, Speech)- probably PT, as he is getting fitted for something called SMO braces tomorrow for his feet/ankles and I suspect it will require some kind of PT oversight. However, he is three years old. He has school twice a week (and one Friday month) for the entire day. Two days a week he is at the preschool/daycare program (7:30am-5:30am). That leaves only three Friday's in the month that I could possibly schedule therapy at the hospital for him without having to pull him out of school or daycare. It is one half hour to the hospital, 45 minute session, and one half hour back home. Now, I suck at math, but that is a hell of a lot of time when you are talking about 3 sessions of speech, 3 sessions of Physical Therapy, and 1 session of OT a week. Not to mention that I also have Little Joe to take into consideration: he has Early On classroom one morning a week (monday, from 8:30 until 11:30), playgroup for two hours on Wednesday's (it might switch to Friday's though), and daycare on tuesday and thursday from 7:30-5:30. Oh, and according to the team that assessed him at the hospital he needs one on one speech and OT as well- OT twice a week and speech 3 times a week.

Little Joe's teacher (who is the subject of a whole other ranting post) is also blowing off the hospital's assesment of his needs and says that between the classroom experience, the playgroup, and one 30 minute OT session every other month in the home (and supposedly speech once a week in the home, but she has yet to schedule that with me), he will " be fine." I also got the now very tiring "Oh we don't listen to what the hospital says. we do our own assessments."

HELP!!! how the hell do I get these kids what they need? I can't possibly do all of these therapies at the hospital for both boys.....good grief, even if I could, Hoss is THREE YEARS OLD- when does he get time to dance around in his underwear while he watches the movie Annie (His current all time favorite movie)???? And Little Joe is not even 2 yet - is it fair to have his whole life eaten up with therapy and school?

The whole thing is stressing me out and pissing me off.

(a shout out to anyone out there that knows anything about SMO braces- please send me a private email at and let me know what to expect and, more importantly, tips on how to get this little guy to actually wear them. Also, anyone who wants to email me privately about some tips on the IEP fiasco, please do email me.)

Tuesday, September 04, 2007

On Haircuts, Parental Rights, and Developmental Delays

Yes, I know. I have not posted in ages. I apologize profusely. I have written a billion blog posts in my head, but when it comes to finding the time and energy to type them and post them, I just can't seem to get it done. I will be posting more often, as Hoss and Little Joe both start school programs soon (Hoss 2 full days a week; Little Joe one half day a week) and I have enrolled them in a local daycare/preschool for two days a week for socialization and to allow me to get some work done on our home business (I feel tremendous guilt about this, so I really do not need any snotty comments about how awful daycare is etc. please, have mercy on me. I am doing the best that I can).

The boys did get their haircut on Friday. It made a huge difference in their appearance- especially in Hoss, as the haircut we chose makes the back of his head look a little rounder. Due to concerns on some blog readers part about cultural reasons for not cutting hair, I checked again with all social worker's involved (including tribal) and was reassured that mom's reason for not cutting their hair was not cultural but a control issue. Mom's affective ties to her native american community are minimal and she, herself, does not even claim her identity as native american save for those instances where having a tribal membership card is benificial to her- medical care, dental care, etc. That being said, I made sure to not drastically alter the boys hairsytle or length- I simply had the hair dresser give Little Joe a "little boy" cut (and does he ever look CUTE) and Hoss a classic bowl cut (also very darn cute, and, again has the bonus of giving his head a rounder look in the back).

Little Joe and I had a four hour ordeal last week at the hospital's speciality FAS screening clinic. We were both exhausted (it cut directly into his nap time) by the time we were done.At one point he looked at the speech therapist, said "BYE", opened the exam room door, and left! Was very very funny! I am happy to report that the team at the clinic do not believe that Little Joe has FAS or FAE. He is, of course, developmentally delayed, particularily in language. They gave him a tentative diagnosis of "Pervasive Developmental Delay Not Otherwise Specified" (PDD-NOS). He does exhibit some autistic like behaviors, but no one can tell at this point if they are due to the neglect or abuse (children in orphanages display similiar behaviors) or if they have other origins. The plan at this point is to give him speech and occupational therapy and see what happens. There is a strong sense of optimism that the progress he has made while in our home will continue.

Two days after Little Joe's FAS clinic, Hoss and I trotted off to the hospital for a four and a half hour long developmental screening clinic. Hoss was such a great little trooper- he willingly went along with all of the tests and greeted everyone with a smile and "Hi!" When Hoss was originally seen by the doctor (about a month or two before Hoss came to live with us) who runs the clinic it was strongly suggested that Hoss was austitic and also possibly MR (mentally retarded). Well, our little man blew everyone away with the progess he has made- the consensus is that he is not autistic and it is highly unlikely that he is MR. We left that clinic without a diagnosis other than "developmental delays", recomendations for speech, OT, and PT, and a general "let's see what this kid can do" with therapy, stability, and time. Hoss does have extremely low muscle tone and "ligamentatous laxity" (in other words, his ligaments are "loose") and this accounts for a lot of the issues that affect his ability to walk, talk, run, use eating utensils, etc. The lack of eye contact at times is also related to this issue: the PT and OT explained to me that he isn't ignoring or avoiding eye contact so much as he has no clue where his body is in space and is constantly looking around to get a sense of where he is and maintain his balance. Also, his constant "limp noodle" routine when I, or anyone, tries to move him physically is not so much intentional/behavioral but related to this utter inability to sense where he is in space and maintain his balance- he is "hitting the floor" to get himself to feel on solid ground, and he is most likely crying b/c he basically feels like he is on a tilt a whirl most of the time. Hoss does need SMO braces for his feet (they are molded plastic that instert into his shoe and rise up above his ankles to stabilize his ankles and "force" him to stand properly, instead of pushing so hard into the ground with his feet to get a sense of where he is that his ankles are bending almost into the floor and his knees are turning inward). Hoss is definitely not going to like the braces, and I dread going through that transition with him- but the OT and PT made a strong case for his need for them and it sounds like a fight we need to take on.

In other news (and this is big news), Hoss and Little Joe's mom voluntarily relinquished her parental rights last thursday. [ if you were wondering how I finally was able to get their haircut, here is your answer!] She has 21 days to "retract", but she has to prove she has a good, and verifiable,reason: such as she was coerced or bribed. Simply saying "I changed my mind" will not do it.

Everyone involved in the case is very surprised that she stepped up and signed the papers. Recall that she has repeatedly "threatened" to do this in the past but never actually had gone through with it. I am not her biggest fan, but I am proud of her for making this move. I also recognize that is is an incredibly difficult thing to do- I cannot imagine how it must feel to make such a decision. I can only guess why she did it: to avoid the trial? to avoid the inevitable outcome of the trial? To 'do the right thing' for the boys, so that they can have a more stable life? Did she finally recognize that their needs were greater than the resources (familial, psychological, financial, cognitive) available to her to meet those needs? Perhaps she has wanted to do this all along,but didn't want the stigma associated with 'giving her kids away?" I really do not know, nor will I ever really know. It is a very sad situation, and, while we are relieved that the boys will not be going back into that home situation,we are also sad that the boys, and their mom, have come to this awful destination.

Mom will have a final good bye visit of one hour. It has not been scheduled yet, but will most likely take place in the next week or so. It is her right to have this visit, and I completely understand why this right exists, but I do dread it terribly. The boys are not going to understand what is happening and are going to be upset that everyone else is so upset. Mom is going to be highly dramatic and emotional- that is her nature and her pattern, apart from the fact that it is, by nature a high drama event. I think we are going to have two very confused, scared, little boys on our hands that day.

Mom did ask the social worker to have us take Little Joe to Walmart to get his picture taken so she can have pictures of him (he turns two in October) to remember him by. The social worker pointed out that she can't require us to do that, but I told the SW I was willing to do that if I could get it scheduled and done in time for the goodbye visit.

It does bother me that she did not ask for any photos to be taken of Hoss. It does not suprise me, given what I know about her clear preference for Little Joe and her almost complete dimissal/ dislike of Hoss, but it does bother me.

In completely unrelated news- but relevant to the original intent of the blog- referrals from Vietnam are so blankety blank slow right now that I fear Hoss and Little Joe will be entering puberty before we even get a call to get our paperwork ready. R and I are having a lot of conversations right now about what to do about the boys and about our vietnam adoption and have pretty much made our decision, but need to explore a few things first. I will let you all know once I know for sure what we are going to do!

Well, I have laundry to get folded and a few other boring household chores to attend to before I run to pick up the Bubbas from their first day in daycare: I will blog again on Thursday!