Monday, May 24, 2010

Stick a fork in me..

I'm done. 

Lil' Man started his new daycare today.  I took him there eight times before today, to get him used to the place.  But it didnt help one bit.  He ran away, screamed, hit kicked, bite, picked, peed himself, pooped himself, etc. He was screaming so loud I could hear him  before I entered the building.

They are not able to offer the one on one support that he desperately needs.

They have given him until Friday to adjust or he cant come back.  I totally understand, i don't fault the daycare at all.  They have 50 other kids they need to worry about. But why are there no alternatives.  Why am I now faced with giving him back?

Why is there no reliable child care for special needs children?

I spent the entire evening in my room bawling my eyes out.  I am beyond stressed.

If things do not work out what am I supposed to do? I  am left with no other choice than to tell his case worker that she needs to find another home for him to live in.  A home where one parent stays home.

I dont want to do that, I want to keep him until he gets adopted.  But at what cost?

respite

Hubby and I ventured to the beach this passed weekend to celebrate our second wedding anniversary.   Lil' Man went to a new respite home. Out of the respite homes we have used in the passed this one was the best.  However I don't think she understood that Lil' Man has brain damage, and isnt just "bad".    He had one major rage on Saturday, partly because he was in a new environment, and partly because he was over tired.  He had stayed up too late the night before, and missed his afternoon nap.

I just want to yell follow the damn schedule people.

Despite the phone call on Saturday letting us know that Lil' Man had a rage, we still had a great time.  We walked the beach, ventured across the water for some sea food, visited a historic plantation, swim in the ocean, shopped and relaxed in the hot tub.  Oh we even slept till NINE!

I feel guilty using respite, but the mental health break is good for all us, even when it takes us a few days to get the kiddo back on track.

Wednesday, May 19, 2010

Too low

Yesterday the psychologist from the FAS clinic called me to go over Lil' Man's test results.  In most areas he scored low, with the exception  of his expressive language. His behaviors are on the extreme side of the scale.

However both the psychologist , and I think he did not perform as well as he could for a number of reasons. When we first got there he seen someone pushing a cart full of toys.  He could not let go of the idea of going to play with the toys despite the fact that he was told he could play with them when we were done. So every 5 minutes during testing he asked about the cart of toys.

He was tired from the 4 hour drive up the night before, and didnt sleep well because we were in a hotel.  He does not perform with lack of sleep.

He was overly excited, because we were in a new environment  and around new people.

She has asked us to come back for a therapeutic assessment which typically lasts for a week.

We will be staying in the Ronald McDonald house, and going to the clinic each day for shorter amounts of time with the hopes of getting an accurate assessment.

Now if I can figure out how to take a week of work without pissing anyone off.  I've already been off a lot this year (my surgery)

Monday, May 17, 2010

Pizza pizza

So my face still looks like a pizza.  I went to the dermatologist and was prescribed a topical antibiotic.  He couldn't give me anything strong since we are trying to conceive. 

I am also using proactive which worked for me as a teen.

I  was at the store tonight (with no make up on), and I was so self conscious.  Not like me at all.  I was hoping I wouldn't bump into anyone.

The pimples freaken hurt.

Anyone have any magic cure for hormonal acne?

Sunday, May 16, 2010

Busy house

Things are going well here in the Sanford home. We're still working on expanding our family, but no such luck yet.  I'll give it a few more months before visiting the doctor.

Lil' Man is still requiring a lot of sleep.  Today we went to wild adventures.  We got there just before 11am, and left just after 3pm.  Lil' Man was so tired he cried on and off until bed time.  Despite the fact that the slept 12 hours the night before.  We haven't been able to pint point it to down to any one thing.  Maybe he just requires a ton of sleep.

We will get the results from the FAS clinic on Tuesday. 

School gets out next week, and Lil' Man will be starting a brand new daycare.  Since he got booted from the other one.

Next Saturday is our second wedding anniversary. Lil' Man is going to respite, and hubby and I are going to the beach for the weekend.  I think the time apart will do as all a little good.

We've got a family beach trip planned the beginning of June, and a road trip planned in July.  Another beach trip planned in August, and a trip to Atlanta in Sept!  We're gonna be busy!

Thursday, May 13, 2010

cut back

I hate IEP meetings.  We had Lil' Man's annual IEP  review yesterday. They tried to cut a lot of his services. His case worker was fine with the lack of services.  I was so mad at her. Needless to say we didnt agree on much so I refused to sign on the dotted line.  We will meet again mid July to  see if we can come to an agreement.

Have I said I hate IEP meetings?

Tuesday, May 11, 2010

The difference

Regular moms tell their kids to wake up and get dressed in the morning.  And they do it.

Special needs moms put on battle gear to get our kids ready to start their day.

Regular moms ask their kids if they brushed their teeth. 


Special needs moms prompt, “Brush your top teeth.  Brush your bottom teeth.  Did you get the sides?  Open your mouth.  My God, give me that toothbrush!  You’ve left half your meal in there!”

Regular moms wave goodbye as their kids run off to catch the school bus.


Special needs moms get awesome door-to-door bus service for their child.

Regular moms know the names of all their friends.

Special needs moms know most of their friends by their username.

Regular moms judge other moms when kids have tantrums in stores.


Special needs moms say to themselves, “Hmm, I wonder which disability he has?”

Regular moms complain about driving their kids to sports and recreation classes.


Special needs mom grin and bear the weekly trips to tutors, doctors and therapists.

Regular moms’ kids have a teacher.


Special needs moms’ kids have a team.

Regular moms talk about accomplishments.


Special needs moms talk about skills, as in play skills, conversation skills, life skills, social skills and vocational skills.

Regular moms relax with their kids during the summer.


Special needs moms start their second job as home teachers, therapists and skills coaches.

Regular moms think accommodations refer to hotels.


Special needs moms have memorized the top 20 accommodations for their child.

Regular moms hope their child finds a good career.

Special needs moms are hopeful someone gives our child the chance to work.

Regular moms soak in the tub when they want to unwind.


Special needs moms consider a bathroom break a luxury.

Regular moms enjoy reading the latest best selling book.


Special needs moms should receive an honorary degree for all the disability books they've read.

Regular moms go out for dinner and a movie with their husbands every month.


Special needs moms have a date night with their husbands every…wait, what decade is this?

Regular moms complain their kids won’t eat their vegetables.


Special needs moms are so desperate we consider chicken nuggets to be a legitimate meat product and throw in ketchup as a vegetable.

Regular moms’ kids go to play groups.


Special needs moms’ kids go to therapy groups.

Regular moms meet for a ladies night out.


Special needs moms get together at support groups and forums.

Regular moms have medical claim forms that fit in one file folder.


Special needs moms will tell you a small forest was cut down so we could receive our claims.

Regular moms think OT means overtime.


Special needs moms know more acronyms than a NASA engineer.

Regular moms have time to cook a full dinner every evening.


Special needs moms will never admit how many times we've picked up fast food.

Regular moms complain their husbands sit on the couch and watch TV while they do all the work.


Special needs moms...well how about that?  Some things do stay the same!
(Just kidding dads, we know you do your part!)

Regular moms worry about fat and sugar in their children's diets.


Special needs moms worry about gluten, casein, oxalates and have a working knowledge of (FDA approved) food additives.
--Anonymous

Regular dads spend a week teaching their sons to pee in the potty and maybe a month teaching them to poop.


Special needs dads keep trying, sometimes for several years.
--From Michael

Regular moms look forward to an "empty nest."


Special needs moms wonder who will take care of their kids after they're gone.
--From Elizabeth

Regular moms have the numbers of their friends programmed into their cell phones.


Special needs moms have the numbers of their child's specialists programmed in theirs.
--From Kate

Regular moms’ kids are mildly afraid of the dentist.


Special needs moms’ kids are so terrified, 9 out of 10 dentists will ask them not to come back.
From Judy

Regular moms get annoyed when their child won't stop talking.


Special needs moms would do anything to hear their child utter one word, 'Mom'.
--From Elizabeth

Regular moms cringe when their daughter misses a step or gets confused during a ballet recital.


Special needs moms cry a special kind of tears as their child painstakingly holds up one foot while leaning on a chair and says, “Look, mommy, I’m doing ballet.”
--From Kimberly

Regular moms rely on children's vitamins and common cold medicines to meet their kids health needs.


Special needs moms are busy being medical detectives using medicines and supplements a pharmacist can barely pronounce.
--From Melanie

Regular moms budget for new clothes, a new size every season for their children.


Special needs moms know the anguish of three winters in the same size.
--From Heather

Regular moms drive their kids to the pediatrician for their annual exam.


Special needs moms arrange for an ambulance to transport their child to their annual 12 specialist event that lasts a week at children's hospital.
--From Elizabeth

Regular mums complain their kids are under their feet during the summer holidays.


Special needs mums hope to find a school where their child can stay for longer than a term (semester) before being thrown out.
--From Laurie

Regular moms send Christmas cards to their friends and family.


Special needs moms send Christmas cards to friends, family AND the medical team and specialists that helps take care of their child.
--From Kate

Regular moms show up to their kids' activities.


Special needs moms get to work prompting and herding their child in each activity.
--From Ann

Regular moms rarely get calls from their child's teacher.


Special needs moms expect it's a call from the school everytime the phone rings.
--From Anonymous

Regular moms worry about their child being picked on in school.


Special needs moms know their child will be discriminated against their entire lives.
--From Elizabeth

Regular moms are on a first name basis with other moms in their neighborhood.


Special needs moms are on a first name basis with their child's pediatrician, neurosurgeon, gastroenterologist and other specialists.
--From Kate

Regular moms bring their kids to the doctor without any advance preparation.


Special needs moms have prepped their child all week with books and practice getting a shot.  They come in armed with favorite CDs and children’s books and it’s still a traumatic experience for both child and mom.
--From Judy

Regular moms forward funny mom e-mails to each other.


Special needs moms can only send this list to other special needs moms--regular moms would be offended if we suggest they don't understand what we deal with everyday.
--Anonymous

Regular moms occasionally worry about one or two allergies.


Special needs moms have memorized the top 75 allergens, preservatives, chemical additives and toxins.
--From Michael

Regular moms hunt for the best clothes bargains and trendy styles.


Special needs moms hunt for that one manufacturer who makes clothes that fit our child's fine motor or sensory needs.
--Anonymous

Regular moms' stress levels raise from a 3 to a 10 if their child needs stitches or tubes in their ears.


Special needs moms' daily stress levels are already at an 8 so stitches or tubes in ears can actually be a step down from the day to day stresses.
--From Kate

Regular moms look forward to their children going off to college.


Special needs moms do not look forward to deciding whether or not to put their children in state run homes  when they become adults.
--From Elizabeth

Regular moms know their child will eventually pick up reading in their own way.


Special needs moms must tackle reading skills with a sense of urgency and with all the research resources they can muster.
--From Jeri

Regular moms are asked to chaperone for field trips.

Special needs moms are required to be there just so their child can go on the field trip.
--Anonymous

Regular moms put their children to bed and get a good night's sleep.


Special needs moms monitor CPAP machines and masks, Apnea monitors, suction tracheotomy tubes, oxygen tanks, reset pulse oximeter alarms, and feed their children through feeding tubes through the night.
--From Elizabeth

Regular moms try to get their child toilet trained by preschool.


Special needs moms try to get their child toilet trained by high school.
--From Nancy

Regular moms take their child's developmental milestones for granted.


Special needs moms realize what a miracle the human body is to be able to do what it does after spending hundreds of hours teaching our kids to roll over, crawl, walk, eat, play, etc.
--From Kate

Regular moms agonize with their child if he or she doesn’t make the elite soccer team.


Special needs moms would cry tears of joy to see their child play soccer, just once.
--From Kimberly

Regular moms ask the local babysitter to watch the kids on date night.


Special needs moms call a nursing agency when they haveto leave her child home for emergencies only.
--From Elizabeth

Reprinted with permission from One Place for Special Needs. The first several entries were written by Dawn who runs One Place for Special Needs, a national disability resource that lets you find local and online resources, events and even other families in your neighborhood plus over 3,000 online resources! Stay awhile and check out the site. She is also moderator of Autism Community Connection, a Yahoo group for families in Illinois. Dawn has two awesome kids, a supportive husband (honestly!) and strives for a day when communities can effectively reach out to support all special needs.

Thanks, Dawn, for sharing...and growing!...this list with us!!

You can find Dawn's original post here.