I'm an Unschooling mom in Las Vegas, NV. I have all boys! A 14 yr old, a 7 yr old, a 1 yr old and 2 teenage stepsons.
4 of the 5 have some special need or another, and the 5th would be termed "gifted" if he was in school. They all have their own interests and abilities.
Join me as I blog about our Christ-led learning approach...things that work, things that don't, and the antics of family life!
Fast forward another 5 yrs and now we have Sebastian. Another little man to steal my heart. This one was a hairy monster though...still is! Hair on his back, on his arms, TONS of hair on his head, only one of my kids to be born with hair, and COMBABLE hair! Hair everywhere! But he was a keeper.
He, too, was born full term, over 7 lbs and did great for the first few months of life. Was chubby, beautiful, smiling, LAUGHING, so cute!
At about 6 months he got a nasty little upper respiratory thing..landed him in the ER and on a nebulizer for awhile. His nasty cough seemed to take forever to go away, and he was very lethargic and sickly for a long time.
At first we thought it was just him being sick, taking awhile to get over it. But as time went on he never seemed to be that happy, smiling laughing baby. We could occasionally coax a smile out of him, but even that started to fail. He wasn't gaining weight and wasn't DOING much of anything.
Eventually I brought up our concerns to the pediatrician, that he wasn't meeting some developmental milestones (I had waited and waited...but at 8 mo he wasn't sitting up, whereas at 4 months he was strong enough to do so with help) That started our liason with Nevada Early Intervention Services.
However, he still wasn't acting HAPPY. He was always s smallish baby, but now REALLY small and not thriving.
Eventually I took him back to the pediatrician and told her I think he needs to be admitted. He was and stayed in the hosptial for 3 weeks. This was just at the end of August.
It's been a rough road, one we're still on, looking for answers. Being that this is the 2nd child, presenting with many of the same problems, they started looking at metabolic disorders and mitochondrial defects IMMEDIATELY.
One of the first tests run showed that sure enough, Sebastian was highly acidodic. Further analyzing, results came back weeks later, showed his methylmalonic levels were high. This pointed towards what we were suspecting, a metabolic disorder.
Here he is at his worst..because his body was in such a sad state he had a horrible reaction to a drug..and it almost killed him
During his stay, we did a lot of addressing the immediate problems...he has an oral sensitivity and won't let ANYTHING in his mouth, he had low and floppy muscle tone. He had LOTS of therapy..every day 2 different therapists, sometimes each 2 x a day. He needed a central line, g-tube placement and blood and plasma transfusions.
Here's little lovely on the upswing..about 2 weeks into our hospital stay:
After combatting most of the major immediate health issues with Sebastian, we were released with ongoing therapy and an appointment with a Genetics specialist at UCLA.
To date, Sebastian has a gtube which is his only source of nutrition.He had been breastfed but recently even backed away from my nipple in his mouth...his oral sensitivity is crazy! However, at the hospital one of the nurses got him to suck on a pacifier and he is hardly ever without it...totally crazy! It's about the only thing that goes in his mouth!
He receives speech therapy, occupational therapy (fine motor skills) and physical therapy all once a week. Luckily, they come to the home..otherwise life would be miserable carting everyone around! This is the least disruptive. Then, we also follow up with Nevada Early Intervention services, so they have a feeding team, PT, and nutritionist that all come out also.
These appointments, along with follow-up dr appointments pretty much guarentee we are busy 3-5 times a week with little fellow! Throw in Elias' speech, gymnastics, Awanas and brian's activities...achh!!!! I live by my appointment book!
As far as his health today...he gets 3 feeds a day + an all night drip (on his feeding pump), he's learning to crawl..can really scoot around on his butt very well! He's happy, laughing and so much fun! He's on a supplement called Carnitine, and since he's not eating yet we don't have to worry about his diet.
So..both of them are happy and on the paths to health! We try to limit viruses/germs around them, as they can trigger their bodies into shutting down, and we balance this with actually going out! We're that family that always asks "Has anyone recently been sick in your house?"
While we may never get a definitive diagnosis, we know that it is virus induced and that they get acidodic and their bodies can't metabolize certain things correctly. In their case it looks like protein, so we limit that also.
It's all part of life. If we weren't "heavy" into therapy, we'd be "heavy" into cop-op, or gardening, or lighthouses of something! This is just the season to be busy with Sebastian! We'll move on and be busy with something more fun soon :)
With a 7 yr age gap, Elias was born! This boy stole my heart! He was so special! By this time I was fully researched "up" and he was not vaccinated, solely breastfed and slept in our bed.
He was full term, 7.4 at birth, thrived for the first 9 months, was crawling, doing baby things, and then we all got a tummy bug. He never seemed to recover. A month or so later he got another bout of something nasty and I ended up bringing him to the ER. There, routine tests showed he had extremely low red blood cells...we were immediately transferred to a local Children's Hospital.
This started our long journey of blood transfusions, platelet transfusions, test and more tests. He was an anomaly. Noone could figure out what was wrong with him.
Meanwhile he never really recovered from the tummy bug, constantly throwing up, not wanting to eat solids, but only nurse, started backsliding with development, and being all around sickly looking.
Finally in June of 2002 he was admitted to the hospital. We kept finding out pieces to the puzzle, but never any definitive WHYs.
They immediately found out (through an endoscopic probe) that he had no villi in his small intestines. These are the things that catch your nutrients..without them you end up malnourished...as Elias was. He ended up on TPN, and then a feeding tube.
He had the G-tube for about 1 1/2 - 2 years, as he re-learned to put food in his mouth (without it making him throw up) and eat enough to sustain.
During this time Elias had some pretty invasive things done:
A bone marrow test done
A spinal tap
a central line inserted
multiple blood and platelet transfusion
a Port-a-cath inserted
a Gtube inserted
upper/lower GI
3x biopsies of small intestines, esophagus and bowels
colonoscopy
Later he had the Port removed (surgery) and the gtube taken out (not surgery)
Most of Elias' illness we were focusing on hemotological issues. Why isn't his body making cells. Eventually we delved into stomach issues too, but noone could ever say which came first. What caused what. We knew lots of pieces, we knew B12 deficiency, we knew Villous Atrophy, we knew so much, but no WHYS. The best we could figure was a virus-induced attack of the villi which led to malnutrition, which led to body being unable to make what it needed.
Who knows? We worked to fix each individual problem and it worked!
Elias was left developmentally delayed from all his "down time" being sick. He slowly but surely caught up in most areas, except speech. Because he went so long, during critical developmental periods, without using certain mouth muscles, he has some ongoing speech issues.
Elias today is 6 1/2. He is 150% boy, Very active, very happy. He has speech in the school 4x a week. He is a loving and very healthy boy!
Even though we went through a rough year and a semi rough following year catching him up, now he GLOWS with health!
Forrest, the next stepson, currently 13. Poor boy, had trial after trial and self-identity wrapped up with his failure at school.
Forrest, when I first moved here, was 5 and ohhhh so active and ooohh so "crazy". He'd be running and run SMACK into a pole. Like, full force. Just not see it. I can't tell you how many pairs of glasses he broke in one year...it was sickening.
He's a wonderful child, but was so overshadowed by being hyper and being unable to keep up in school.
About a year into my marriage, Forrest was finally diagnosed with ADHD and went on medicine. We saw a nice improvement of activity lessening, but sadly, it didn't improve his schoolwork.
We had many sad years, many tough years with Forrest. He was very jealous of my son being homeschooled, and he was struggling with no real friends and low self esteem. He had little ability to think outside of himself, and worse, would lie over any little thing.
Some of these issues are ongoing today, but after a recent dr's visit Forrest has been taken off his medication and is working on being more in control of his own behaviors.
He, too, is now living with his mom in Kansas and after a year of being homeschooled, is now enjoying middle school in a new area.
Thanks to my parents who would constantly encourage me, "when someone acts unlovable, you still need to love on them". The phone calls they had to endure, the tears shed over this child, the feelings of being unable to help him..the wondering, will he ever be successful in life?
Yet I made it, and so did he! Day by day, through trial and adversity and bad moods, we're both still here!
Looking forward to maturity and strength and self-control..and praying hard :) As we all pull together for this child of God, we know he'll make it, in his own way!
This is my biological child from a previous marriage..Brian, also currently 14.
The 3 oldest boys are literally each 6 mo apart from each other...when they were little it was like having triplets. Seriously. Thank GOD I came into this when they were 5, I can't imagine 3 2 yr olds!!!
So, Brian...Brian is unique because he is so intelligent. He has been homeschooled since birth, but if he were in school he'd be labeled gifted.
Luckily, we unschool, so, again....nothing is out of the norm here...anything goes! Any interest, ability etc..it's not got to conform to some entity's scope and sequence, or schedule..it's all about them!
Brian was my child that got me researching. At first, poor kid...I did everything "wrong"...ok not wrong, but different with him! He wasn't breastfed, he slept in a crib, what else did I do to him...oh, yes, I vaccinated him. Which led him to get pertussis at 2 mo and almost die. Hence, the research! At that point they were giving the DTP now it's the DTaP (Acellular version...the live version...gasp, gave too many people pertussis!
This bright and lovely child of mine has had me off on so many incredible learning experiences, I couldn't even imagine the journey!
Lighthouses
Raised bed gardens
Rocks
Japanese
Hebrew
Where would we be without the YEARS of these interests, not to mention the momentary interests that interspersed our lives continually?
So..Christopher, my stepson, currently 14, was born with Cerebral Palsy. He was premature and is lucky to be alive today! All 4 limbs are affected and he is also mildly mentally retarded.
When I married his dad, he was going to Speech, Occupational and Physical Therapy 1x a week each and also had it in school. He had already had an eye surgery and a few leg surgeries (these are common for kids with CP)
He was able to manuever around in a walker, wore leg braces and had a wheelchair for longer trips. When he was younger it really wasn't that hard....we could pick him up, move him around, help him in the car...the wheelchair wasn't too huge, although we did need a lot of storage space between wheelchair, walker and stroller for the baby!
For a couple of years my friends remember me as "crazy"...pushing around a wheelchair and a stroller, with 2 other littles hanging on! Grocery shopping was fun, let me tell you!
Thankfully, they get older...the 2 littles got bigger and would take turns pushing the wheelchair or stroller.
With Christopher I got a crash course in IEPs and rights of students, and real up close and personal with various advocates and compliance officers for the school district.
When I first came into his life, he was in a self-contained classroom and was by FAR the MOST able. So, we eventually fought to get him out of there. Of course, out of there, means INTO somewhere else..and they weren't really equipped for him in regular ed either.
After a run in with a pair of scissors (who gives a spastic kid scissors?!?!) we started fighting for an aid. He needed to be in the most appropriate educational setting (as he wasn't homeschooled).
By the time he finished in elementary school, he had a part time aid, they had made an extra handicapped spot with a slanted curb for him to unload and get into school, and the IEP was fairly satisfactory. But then he had to move on to middle school!
In middle school, he was only there for a few months prior to a scheduled "routine" surgery.
That "routine" surgery left his legs mangled and with no feeling (well, except excruciating pain for the first few months...the ghost pain they talk about with amputees...NOT FUN!)
At that point, Christopher's grandmom moved here with his mom to be his full time aid. It wasn't so easy to lift him anymore, or maneuver him,even toileting was a problem. He couldn't bare weight, or even help get himself up and down, his legs wouldn't work at all.
3 yrs later,and Christopher now lives in Kansas with his mom and grandmom, sharing duties of his care....which is 24 hrs! He does go to school, but needs a lot of attention and care, therapies, and someone to sleep with every night due to nightmares. Hats off to mom and grandmom for really being there, through it all!
I learned a whole lot with Christopher...so many things.. I can't even catalog them all!
1) They need to have a mom with a kid in a wheelchair design WHERE the elevators are
2) public places need MORE and BETTER automatic doors
3) People should treat ALL my kids nicely (Can't tell you how many times JUST Christopher would get a balloon, or extra candy...hello! There were 2 more little kids looking on with jealousy!)
4) If you don't stand up for your kid, noone else is going to
5) Educate yourself on everything, IEPs, laws, medical advice
6) Be upfront about your specialness....in kid friendly terms we try to explain why his legs don't work, etc.
Well, this is a brief writeup of child #1, on to the next one!
Upcoming will be brief intros of our boys and their "special needs", although I don't think of them that way...we just do what we need to for each child. We might have to follow one's interest in Rocks, and for another we might be practicing new exercises from Physical Therapy....another might need instructions one at a time....it's just our life! Minus the "critical" moments, it's all doable!
