Despite all my time spent this rainy weekend -- volunteering at a preschool rummage sale, sending out emails for elementary school, making phone calls for Stand for Children, grocery shopping, doing laundry -- there is one thing that keeps running through my brain:
"I am the parent of a special needs child."
Now this would seem like a complete no-brainer to some of you who've seen me through my weekly prenatal specialist visits, who know about all of our boy's physical therapy, visits to developmental specialists, early intervention, special education and the like all these 7 or so years, but somehow it has never really sunken in until now. To others who don't know all the details (and even some who do), you'll be surprised.
Mind you I think all kids have special needs - none of them should or could be raised with a cookie cutter approach, but mine... well he's gonna need us in ways we never thought of and it isn't over just cause he seems pretty much fine to folks who don't live in our house.
Our boy is a wonderfully bright, energetic, creative, quirky guy who is hard not to love but certain things just aren't serving him well. I could wax on about a zillion things but honestly today I mostly want to say that I realize truly that "I am the parent of a special needs child." My work has just begun. His story has just begun. Wish us well!
Sunday, September 30, 2007
Friday, September 28, 2007
Fall back position
I've been hearing some whispers that some folks miss my regular blogging. It is nice to be missed. Sorry to say things have just been crazy busy and frustrating around the home front of late.
Daughter is missing day #2 of school today with a nasty cough that just doesn't seem to want to go away. I've still got a scratchy throat but am hoping to hold off anything more major... Hubby is wavering and still not feeling 100% despite having taken off basically a week and using up both his sick and vacation time! The boy is home sick for his first day today (which I frankly never look forward to) with a cough and tummy ache ... most likely finally catching what the rest of us have already had.
In the midst of all this sickness, we managed to buy a new/used Quest Van with all the bells and whistles! So yes we've taken the plunge although thankfully it is basically equal in footprint to our recently sold Subaru Outback Forester Wagon. So now, when the kids aren't home sick (did I say Ugh yet?), we can actually carpool 4 or 5 kids in style - no more juggling of creative maneuvers.
Back to blogging. I've been trying almost every day to do some but then life has gotten in the way. We tried to have our boy assessed for sensory issues but frankly the developmental pediatrician talked to him, talked to us, looked at ALL THE MANY PAPERS we filled out and gave us not so much. Her assessment: He is a very bright boy whose social and emotional skills haven't caught up yet (in other words, try to stay calm and try out some new parenting techniques). Mind you, no sensory assessment at all (she said it isn't covered through our insurance - knew that duh - and that in her opinion it isn't proven science. Thanks very much.
What really ticks me off no end however is the fact that although one of her own medical colleagues and our paperwork both indicated the likelihood of Noonan's Syndrome in our boy, she stated she didn't know what it was and by the way apparently couldn't even take the time to do a quick google search. Quick search give me this from Wikidepdia:
Noonan Syndrome (NS) is a relatively common congenital genetic condition which affects both males and females. It used to be referred to as the male version of Turner's syndrome[1]; however, the genetic causes of Noonan syndrome and Turner syndrome are distinct. The principal features include congenital heart malformation, short stature, learning problems, indentation of the chest, impaired blood clotting, and a characteristic configuration of facial features. The syndrome is named after Dr Jacqueline Noonan, a pediatric cardiologist born October 28, 1921 in Burlington, Vermont; she is now based in Kentucky.
It is believed that between approximately 1 in 1,000 and 1 in 2,500 children worldwide are born with NS. It is one of the most common genetic syndromes associated with congenital heart disease, similar in frequency to Down syndrome. However, the range and severity of features can vary greatly in patients with NS. Therefore, the syndrome is not always identified at an early age.
Now that wasn't so hard - took all of about 3 seconds honestly.
Luckily for us the boy has an IEP and is already working with an occupational therapist around handwriting issues. That same woman has worked with him off and on since he was 2 or 3 years old and knows about Sensory issues - does assessment and therapy in private practice... so even without the help of above-mentioned doctor (who came highly recommended) or our insurance, we have options to move forward.
We are also now looking into the possibility of Restless Leg Syndrome. The husband seems to think this is an Aha moment - and maybe it is. Another avenue to go down.
And while I'm not doing research and trying to get support and answers online for whatever might be ailing (or not serving) my son, I'm staying home with sick kids, busy as all get out at work, trying to parent help at elementary school, trying to get this other paid blog off the ground and now taking class photos for my daughter's preschool - wish me luck. Sorr there haven't been much in the way of photos on this blog lately either... just too time consuming but I'm hoping to get back to it soon... promise.
What's keeping you busy this Fall?
Daughter is missing day #2 of school today with a nasty cough that just doesn't seem to want to go away. I've still got a scratchy throat but am hoping to hold off anything more major... Hubby is wavering and still not feeling 100% despite having taken off basically a week and using up both his sick and vacation time! The boy is home sick for his first day today (which I frankly never look forward to) with a cough and tummy ache ... most likely finally catching what the rest of us have already had.
In the midst of all this sickness, we managed to buy a new/used Quest Van with all the bells and whistles! So yes we've taken the plunge although thankfully it is basically equal in footprint to our recently sold Subaru Outback Forester Wagon. So now, when the kids aren't home sick (did I say Ugh yet?), we can actually carpool 4 or 5 kids in style - no more juggling of creative maneuvers.
Back to blogging. I've been trying almost every day to do some but then life has gotten in the way. We tried to have our boy assessed for sensory issues but frankly the developmental pediatrician talked to him, talked to us, looked at ALL THE MANY PAPERS we filled out and gave us not so much. Her assessment: He is a very bright boy whose social and emotional skills haven't caught up yet (in other words, try to stay calm and try out some new parenting techniques). Mind you, no sensory assessment at all (she said it isn't covered through our insurance - knew that duh - and that in her opinion it isn't proven science. Thanks very much.
What really ticks me off no end however is the fact that although one of her own medical colleagues and our paperwork both indicated the likelihood of Noonan's Syndrome in our boy, she stated she didn't know what it was and by the way apparently couldn't even take the time to do a quick google search. Quick search give me this from Wikidepdia:
Noonan Syndrome (NS) is a relatively common congenital genetic condition which affects both males and females. It used to be referred to as the male version of Turner's syndrome[1]; however, the genetic causes of Noonan syndrome and Turner syndrome are distinct. The principal features include congenital heart malformation, short stature, learning problems, indentation of the chest, impaired blood clotting, and a characteristic configuration of facial features. The syndrome is named after Dr Jacqueline Noonan, a pediatric cardiologist born October 28, 1921 in Burlington, Vermont; she is now based in Kentucky.
It is believed that between approximately 1 in 1,000 and 1 in 2,500 children worldwide are born with NS. It is one of the most common genetic syndromes associated with congenital heart disease, similar in frequency to Down syndrome. However, the range and severity of features can vary greatly in patients with NS. Therefore, the syndrome is not always identified at an early age.
Now that wasn't so hard - took all of about 3 seconds honestly.
Luckily for us the boy has an IEP and is already working with an occupational therapist around handwriting issues. That same woman has worked with him off and on since he was 2 or 3 years old and knows about Sensory issues - does assessment and therapy in private practice... so even without the help of above-mentioned doctor (who came highly recommended) or our insurance, we have options to move forward.
We are also now looking into the possibility of Restless Leg Syndrome. The husband seems to think this is an Aha moment - and maybe it is. Another avenue to go down.
And while I'm not doing research and trying to get support and answers online for whatever might be ailing (or not serving) my son, I'm staying home with sick kids, busy as all get out at work, trying to parent help at elementary school, trying to get this other paid blog off the ground and now taking class photos for my daughter's preschool - wish me luck. Sorr there haven't been much in the way of photos on this blog lately either... just too time consuming but I'm hoping to get back to it soon... promise.
What's keeping you busy this Fall?
Friday, September 21, 2007
Days like this
- Get up
- Make coffee
- Play Legos
- Make breakfast for the kids (nibble a little)
- Get the kids to get dressed
- Try to keep the kids from fighting
- Take boy to first grade
- Take girl to preschool
- Go get coffee and a bagel (nibble not enough)
- Go to 2nd grade and help with painting project
- Go home and pick up hubbie to take him to get a car part
- Bring hubbie home to fix car
- Head back to 2nd grade if there's time
- Head back to preschool to be parent helper at lunchtime
- Bring girl home
- Make and eat lunch
- Head to work
Ahhhhhh ... you don't get fun days like this when you are single and don't have kids! :-)
Sunday, September 16, 2007
And the eyes have it
Eye, eye, eye... this was part of my week:
NURSE: "Hi this is the school nurse. Your boy got hurt on the playground at recess."
MAMA: "Oh gosh! What happened? Is he o.k.?"
NURSE: "Apparently it was an accident. He got poked very hard in the eye. He wouldn't open it so I offered him a gummy bear."
- Hubbie went back to school (had kids to myself 2 nights in a row),
- 3 school meetings in 2 days,
- Girl spiking fever for several days and sporting pink eye thus missing 1st day of preschool,
- Boy complaining of tooth pain (where he already has root canal and crowns -- what's up with that?),
- Mama having horrible cramps which of course come with the severe grumpies,
- Call from the boy's school but not for tooth pain... goes something like this:
NURSE: "Hi this is the school nurse. Your boy got hurt on the playground at recess."
MAMA: "Oh gosh! What happened? Is he o.k.?"
NURSE: "Apparently it was an accident. He got poked very hard in the eye. He wouldn't open it so I offered him a gummy bear."
MAMA: "Um... his teeth are super prone to decay. I'd rather he didn't have a gummy bear."
NURSE: "He already ate it -- but I had him rinse his mouth out with water."
It goes on but needless to say, I ended up having to pick up said, Dad having to sit with him for hours at urgent care because the pain wouldn't go away, diagnosis corneal abrasion, boy still not opening eye 2 days later! Not to worry, once he opens his eye - he should be fine.
And the fun just never ends.
Monday, September 10, 2007
Parfait-ion
Trying to get off to a good start this morning with breakfast parfaits... with fresh blackberries off the backyard vine and the last ripe strawberries out of the garden - yum. At least my kids WILL eat fruit ... and eat it and eat it and eat it.We are busy as boy enters school week #2 in his new classroom... seems to be going well (cross our fingers). It is probably going better than his behavior at home - which seems to be his M.O.
Girl is excited as she starts her first week of school (and parent helping for me).
Dad starts a new semester at his school. I'm not sure if I'm excited about that or not given it means two afternoons/nights in a row each week that I've got the kids to myself for school pickup, dinner, baths, bedtime.
Today I get to help the boy's teacher with files briefly, get trained as a preschool parent helper although I've done it now for 2 years basically, go to a volunteer meeting (Stand for Children) and theoretically 2 more for elementary school (if I can find babysitting). The fun has begun...
What's fun for you right now during this back-to-school season?
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