Thank you, Beth for your first entry! This is the best addition I have made to the class in a long time!
This week, we're discussing daily care needs for children with severe disabilities. Do either of your children require therapies after school? It is important for our future teachers to see how much time it takes to care for their students outside of school.
Sometimes, even though we mean well, we educators ask our parents to do just "one more" task at home - practice reading, do this exercise, etc. And it can be difficult to fit that one extra thing in!
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I know what you mean.. I'm asked to "just do.." they make it sound like its not a big deal or of course we have time to do it because its in the best interest of our child right?? its not that easy..
ReplyDeletejust getting to school in the morning can be a big chore by itself.. Autistic kids are big on schedules and order;asking me or them to "just do.." or to change someting that is so ritualistic, is throwing a major kink into a well oiled machine that is getting out the door in the morning by 7am or whatever time..
its best to ask the parents in the beginning to type out their childs weekly schedule..(when they are doing registration or get to know me week or whenever.). have the parents show you what it is their child has to go through in a 24 hr period.. some kids get meds throughout the night; or have to be woke up and changed at 3am (mine does)every night.
I know you mean well (its been 8yrs so I've made many friends that are teachers and we discuss) but its usually not 1 more thing..
your 1 thing; is another 7 steps for my child to be able to do it; master it; understand it,etc..and its me having to do it.. so its also alot of not what the child has going on daily, but what does mom/dad/grandma have going on..they are the ones that will have to carry out the new task
Be prepared for both types of parents: the ones that will add one more thing in if we think it can slightly make a difference and the ones who say why bother they will always be in a chair or have downs or be Autistic..
if the teacher can already look at it; tell me where it may best fit in and how I can add it in with the least bit of upset; then I am more than likely to try it... it would not be a good idea to say.. hey, can you start doing this? or how about adding this in for me? dont make it sound like its making your life easier..
ReplyDeleteis it going to disrupt feeding; sleeping; is it going to cause a behavior?? or will the child even realize that its being added in?? will it help to talk about it before hand or draw pictures of what the new thing is? maybe use a social story to introduce it?
i'm thinking if it's a more severe child; then it may be more of the parent's time you are taking away from; not the childs..does that make sense??
the more severe child; may not have the comprehension of adding a new task; its more of a demand on the caregivers time. just trying to figure out where we can fit it in..depending on the task and goals of the child (IEP)how will it help them.. etc..
It sounds like you have a very full day. Thank you for doing this blog to help us learn first hand!!
ReplyDeleteYou mentioned that adding that one extra thing is generally for the caregiver and it is hard to have the child with autism do "the extra thing". I'm just curious, in your household, how does your schedule work? Do you divide the work up or does one person do most of the caregiving for Cooper?
I had no idea how much time and energy went into parenting a child with autism. I never knew that a child may need to take medicine at night! Thank you for sharing so much of your life with us. It doesn't sound like you have the time to do this at all & I really appreciate all the honest, open & extensive knowledge you have given me. I'm just curious how much communication do you have with Cooper's teacher in a week? Do you communicate mostly through notes, phone calls, meetings, emails, etc.?
ReplyDeleteJust as I suspected, Beth. Thanks for sharing this with us. I think it will be eye-opening for a lot of my students.
ReplyDeletesince I stay at home (you can NOT imagine how hard it is to get a job when you have a kid with any special need; I do the majority of "stuff" for the kids..my husband is working from 7am-6pm most days so when he gets home he takes over the playing or reading or helping with homework,etc..so I can start dinner.. I belong to a non profit; so I have board mtgs and fundraising that takes up any "free" time I have; I do have mtgs I attend monthly for this and on those nights he comes home early for me to go. I had to quit my preschool teaching job. when you have a child that can not go to "typical" day care; there are no speical needs day cares out there..anyone that wants to tackle that one be my guest.. I guarantee you would be filled to capacity within a month! the preschool cooper went to was only 2x a week for 3 hrs; not hrs for job . then when he started public school there is always an IEP or phone call on what he's done; I babysat for a bit but even then the parents get upset when you have to take their child to an appt or the school for a mtg.. you (I) have to pretty much give up any normal sort of life you hoped of ever having.. now with my 3yr old currently in a private Autism clinic; he is gone 9-12 daily; but I still have a 2 yr old..so again, the job is not a possibility..at least not for a few more years...
ReplyDeleteas for the child having to do the "extra thing" depends on what it is.. a child with severe disability probably is not reading /writing by themselves or they wouldnt be "severe".. so again; the caregiver has to sit there and read along with them or hand over hand write with them.. think about how hard it is to get a "typical" kid to do homework every night..multiply that by a kid that has communication, speech, motor, any impairment..and its twice as hard..
my schedule on a given day: Cooper gets up at 5am and will watch tv downstairs until he hears his father get up at 6am. He'll run upstairs to his room since he knows he is not supposed to be down there until 6:30; husband gets our 8yr old up, fed, dressed and he drops him at the bus stop on his way to work. I get out of bed at 7am; wake up the 2 little ones; dress, feed etc..cooper is downstairs getting something to eat and "stimming" pretty hard by now.. pacing the floors, reciting things, stomping his foot, etc.. I leave at 7:45; drop off cooper at 8am; drive 30 min to drop jackson off at 9am; so we sit for 30 min in the car every day; back home to clean; laundry; groceries; etc.. leave to pick up jackson at 11:30; home with him by 12:45. feed he and shelby lunch; speech person comes to house for an hour 1:30-2:30. garrett comes in from bus at 2:45; we begin his homework; cooper comes in at 4pm we begin his homework; husband comes home around 5:30-6pm..
ReplyDeletethis is pretty much how it is every weekday; except Friday's. husband is off and I have my IEP's on these days; any other mtgs; my husband golfs when he gets the chance; I actually like to stay home when its quiet just to have quiet.. I dont need to go to the mall or anywhere to "get out".. I'm out all the time..just cherish the quiet times I can get..
since cooper is pretty high functioning by now; we have taught him how to get his own breakfast; snacks (he has his own shelf in the pantry and we use a sharpie to write any directions on the box) take a shower, dress himself, etc.. the basic stuff.. we constantly have to tell him "hands quiet, stop reciting" when he is "stimming".. some kids rock back and forth; flap hands are the things you see alot of Autistic kids do but he does not. certain things bother him..songs on tv, smells, noises.. our kids are highly sensitive to the things we usually never notice or tune out..Jackson is in an ocd state right now where he has to have spongebob all the time.. he has to be holding a dvd or watching it.. he has severe meltdowns and tantrums which we are working through..but makes the house more chaotic because we dont give in..just to get him to be quiet..so its harder on the others..ABA therapy has taught us many things that we practice on all the kids..
ReplyDeleteJackson gets up every night to get his diaper changed..potty training is enormously hard with our kids..the feeling; smell; touch..(yes they play in it!! paint the walls,etc..) some kids are too sensitive and some are not enough so the smell doesnt even bother them..so I've had to learn how to do without waking him; and his sister or they are up for hrs at night trying to get them back to sleep...praying that he doesnt wake and play in it before i get to him..cooper was not an issue. he was the only kid we had then; so things were much easier.
Diet is extremely complicated with our kids also..some kids are on so many meds 24/7; others can only eat wheat free/gluten free/ non dairy things.. parenst swear by these diets.. I have friends who do all, some, none of them.. we have done the soy milk since birth.. cooper used to drink bottle after bottle of regular milk; yogurt and bread..I always heard autistic kids crave whats worst for them.. it was true.. as soon as i heard about soy and took him off the stuff; we saw eye contact and less mood swings..he has eaten sugar free wheat bread ever since. all kids that followed have been on soy formula/milk since birth ; we tried taking jackson off several months ago and we actually saw him regress; he went back on the soy milk and picked back up..its unbelievable.. but diet does affect behavior; at least in our kids. so there is no eating out; going to birthday parties (or you take your own snacks); taking your own snacks to the movies or anywhere for that matter.. its an ENTIRE change of the life you thought you'd have.. my kids eat most regular things; we do not do the wheat/gluten free diet..you can not imagine how every aspect of your daily life is changed by a kid with autism.. i am so thankful that my kids are higher functioning.. I have friends that are not so lucky and its unbeliveable the sacrifices you have to go through..80% of marriages end in divorce when there is a speical needs child in the house..very few of my autism friends are married to the father of their child on the spectrum..
COMMUNICATION: from day 1 have told everyone I am in this for every bit of info I can get to help my kid (s).. here at the schools you are part of a team.. the Team is : parents, regular ed teacher, special ed teacher, resource, OT, speech, PT, a Lead therapist, a consulting teacher for Autism, any advocates or service coordinators that work with the child, etc..
ReplyDeleteso for many years I had monthly mtgs where all of these were invited but obviously they could not all attend..but I was always there and someone else always showed up.. the school let me use the conference room; we go over goals, how he's doing in class, behaviors, etc..what we need to work on..
Cooper has had a communication book in his backpack for 9 yrs.. it is the daily feedback from his teacher, 1 on 1 aide, anyone to let me know what he did that day. it is not detailed; just a few major points of the day and whatever homework he has.. I have to know what is going on in the classroom from the teacher..he cant tell me what his homework is; he forgets by the time he gets home; also if he does not know how to do it then the aide shows some examples for me to see so I can do them with him. she tells me what friends are doing, going to ball games or movies etc.. so we can go as well..
I talk daily to his 1 on 1 thru emails at school. just a quick note at the end of the day. I do not have time to talk on the phone; I do all communication thru emails if I can. his teachers all have emails that I can access off the school website; I usually only see them at the IEPs right now.. he has 7 classes daily and teachers all have different times they are free and I dont ask them to use that time for me.. I prefer to work through the aide. I talk to the vice principal for his grade weekly; just a quick email to ask if there is anything going on coming up etc.. she lets me know about fire drills, pep rallys, things that may be over sensitive for him and upset the daily schedule he is used to.. I've always been very fortunate to have a great team working with cooper and I.