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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

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Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Sunday, August 30, 2009

Homeschooling and therapy

September is almost upon us, I cannot believe how fast this year is flying by, it is true that the years go more quickly the older you get!

Meghan has been in school for 3 weeks, we are still working on a better schedule for her, trying to balance the therapy all three girls receive, cooking, cleaning (need to do much more of that) and any doctors appointments we may have, meetings, evaluations, etc. Sometimes getting the 4-5 hours a day in is difficult. As always; her behavior gets in the way of her schooling, but I am determined to get past that and get on the same schedule we used successfully last year.

Homeschooling pushes people’s buttons; from their reaction you have to believe that many assume that you are too dumb to teach your child anything, and why would you ever think you know more than someone with a college education in, well, education!?

Worse for me is hearing the complaints about lack of socialization for Meghan, (and Kara and Amanda) How in the world can they be socialized if they did not go to public or private school? I like this list written by the Bitter Homeschooler, so read it and then come back so I can finish venting a little. :o) (Thanks Jill for showing me the link)

Love what this person says: STUDY

Our other kids did and do attend public schools. My husband works for the largest school district in town, we are not so much anti public school for our kids, but we are for the three youngest, at least in the current environment. Being a part of the system here, my husband hears first hand the complaints made by his fellow teachers when they are forced to have a special ed student in their class. They frankly resent them and the time they take away from "Kids who actually have a future" (do not get me started on that right now).

I cannot tell you how many teachers , therapists, doctors, and even social workers who should know better, still use the term "Downs child" when they discuss my children. Despite numerous reminders from me they continue use this term to describe my daughters, I suppose they have not read or heard about People First language? Our daughters HAVE down syndrome, they are not Down syndrome. They are precious little girls, one loves to dress pretty and dance, one loves to eat, look at herself in the mirror and sneak food from the kitchen (did I mention she likes to eat), the other loves to swim and play outdoors. They are just my beautiful children!

Like many children with Down syndrome; Meghan has an IEP which we follow for her scholastic goals and I adapt her curriculum according to the guidelines given to me in a workshop provided by Jill M, a woman who educates parents and teachers about modifying schoolwork for kids with special educational needs. Meghan (and I) has a classroom and a special ed teacher, a speech and occupational therapist to bounce ideas off if we run into issues. They are an email or phone call away. I think and online charter is the best of both worlds; I love that we can get books, a computer, and on-line courses for free, because it is a charter school, we have it good here! We just learned on Friday that Meghan qualifies for Title 1 math, something we are considering, though it adds another 3 hours of work per week to her schedule. We are contacting the math teacher to discuss this further; we cannot understand why the hours spent on this cannot be incorporated into her daily math schedule. We are also considering Numicon math for all of the girls, we have read many positive reviews from other homeschooling parents.

Most of my friends choose public education for their children with Down syndrome. I do not condemn them for making that decision, I know they are very involved in their children’s schooling, and they trust the system, feel confident they are making the right choice for their child. However I do wish it did not cause a strain on friendships…somehow they think I am judging them.

Homeschooling takes time; we are required to do 4 hours of schoolwork a day, 5 days a week. So we have to make some adjustments so we can navigate through our week with as little issues as possible. Our first obstacle was the number of hours and days we had therapy for the girls; Monday morning was speech for Kara, Tuesday morning feeding therapy and OT for Amanda, and Friday morning speech for Meghan and Kara for 2 hours. Though it probably does not sound like a lot of time spent on therapy, it disrupts our school schedule.

Meghan and Kara had OT evaluations last week, beyond a doubt they need help with fine motor skills, though Meghan may not get approved for in-home therapy…but they both will likely have OT added to our therapy schedule. We are also in the process of adding sensory integration therapy for Amanda and Kara. You can see we may have some issues with organizing our time.

We are hoping and praying a physical therapist will become available soon for Kara and Amanda, but when will we fit that in? We have a PT shortage, so many left when AZ cut funding to early intervention. While Kara is walking, her gross motor skills seem disorganized and clumsy and Amanda at age 4 ½ is not walking yet. They need PT.

As a result of our scheduling issues, Monday is Kara’s last speech therapy session with Ms T. We are adding Kara to Friday’s speech therapy session with Ms. A. Ms. A has been Meghan’s speech therapist since Meghan was a toddler. She agreed to take on Amanda this year, but her schedule did not allow adding Kara too, so we sought a different therapist for her. Ms A has agreed to add Kara after her schedule opened up more, thank goodness for her kind heart! All three girls will begin therapy Fridays at 10:00 and will end around 1 PM; it will be a long morning for everyone.
Kara has no expressive speech, uses little to no sign, and we are in the process of getting her approved for an communication device, they are extremely expensive, consequently we are a little nervous that our insurance will approve her for one, and if not, whether or not our financially beleaguered state will be able to provide one instead. We cannot afford this device ourselves, and honestly I am truly surprised that Kara does not have verbal speech, I just do not understand what happened; she used to call me Mama and Tom Papa. She used to babble and vocalize a lot; she just does not do it any longer. Check out this website to see the device we are planning on getting for Kara. It will surely help her express her needs more clearly, the lack of expressive language is adversely affecting her behavior. She will begin with a device that has 8 choices and move on from there.

Having therapy on Friday mornings means Meghan and I will not be able to attend the reading Elluminate session Meghan’s special ed teacher gives. We are hoping she will begin to record her sessions so Meghan can listen to them later on in the day.

We will continue to have feeding therapy for Amanda on Tuesdays. It is helping her immensely, she looks healthier, and has so much more vitality, but she is still below the 5 percentile for weight on the Ds weight chart, her height is at 8%. She is a peanut, but I am not going to worry about her size any longer, as I said on her blog, she is who she is, and she is going to be tiny. (The geneticist and the developmental pediatrician agree with me) She has gained 5 pounds in a year, not bad for a tiny girl. We will continue feeding therapy until she can self feed and learn to chew. She is getting closer to self feeding, not so close to chewing. Tom and I continue to feed her all her meals, mostly pureed and some fork mashed foods. If Kara (maybe Meghan) is approved for OT, they will come on Tuesdays and work will all three girls, we discussed this with their therapists last week.

With all of this going on, I need to be better organized, I am a bit of a procrastinator, and my family does not seem to notice dirty clothes that need washing or floors that need mopping, so I can get stressed out from the demands placed on me with therpay, schoolwork and housework. We signed up for this when we became parents, and then decided to adopt Kara and Amanda, but goodness, I sometimes wish for a day away from all this work! A mommy only day.

If you ever visit me, never expect my house to be clean, there are only so many hours in a day.


GoldenAngelsWorks said...

Geeze you all do have a busy day. I wish I was closer to help out with the girls. Love you all.

Leah said...

Ok, this floors me. The part about being required to have 4 hours per day of schooling. A couple years ago my Angela was on homebound services due to her medical issues. They were only required to provide the number of DIRECT service minutes per week as listed on the IEP, which ended up being a total of about 4-5 hours PER WEEK of school, plus OT. Wonder how they get away with that, yet if you're homeschooling you better be doing more.

Arizona mom to eight said...

Leah, no, the 4 hours is her school work, not her therapy. Most children have the same amount of work during the school day.

carol said...

It sounds like you are one busy woman. I don't know how you do everything that you do. I am so proud of all of you. Tell Meghan I am prod of her getting into a routine the beginnig of any new school yr is tough. I am glad that Amanda is eating better for you. Kara is such a sweety. Hope you guys all stay healthy this winter.
Dont forget to take a few minutes out each day for youself. Kris.


KonaGold said...

Wow, you are busy, busy, busy! I'm sorry to hear that Kara isn't speaking, I understand how frustrating that is! We just had Elijah's annual IFSP review and we will be getting a PECS system for him. He does so well with pictures, we're hopeful! I think you are doing so great with your girls! I admire you so much for homeschooling!

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