A Little More About my SN daughter and family

[JenO]

I was just thinking this morning that it might be nice to introduce myself a little more in detail. I'd love to hear a bit more about others as well. Anyway, my oldest daughter is 8.5, and has a rare genetic disorder called 4p- or Wolf-Hirschhorn syndrome. Didn't know if she would ever walk, but at 4.5 she took off. Now she runs. She is moderately mentally retarded. Though I refer to her more as having an intellectual disability. She is small in stature, mainly nonverbal, and has a seizure disorder that is controlled mainly with meds. She also is struggling with chronic air swallowing, which causes her so much discomfort. BUT...outside of all of this, she is my firstborn and I love her to pieces. She is very loving. Loves to give hugs and kisses...A LOT. She enjoys almost all of the My First Little House on the Prairie books immensely. She loves all things girly and likes me to help her play with baby dolls. Right now, I am currently using a pre-phonics cirriculum with her. We're mainly working on color recongition, letters and letter sounds. She does have a small and slowly growing vocab. she uses selectively.

My 7 year old son is sweet and hardworking.

My 5 year old is all girl and is very caring, and is becoming attentive to her special needs sister.

My 3.5 year old son is cuddly, sweet and quirky. Very handsome too! I really don't think this is the case, but we are watching him for possible mild Aspbergers. But, for various reasons, I think it's more likely he has a few issues with comprehension.

My 2 year old girl...smart, sneaky and a BIG helper too.

[playschool]

It was nice to get to hear more about you. BTW, I clicked on the link to your blog site. Your children are adorable! I love pictures with the whole family sitting on the couch. ( My friend has 5 children and had a similar picture taken of her and her family.) It is wonderful to see that your children are growing in compassion and character. Your older dd has such a beautiful smile on her face and seems so full of joy, despite her challenges.

I have 4 children older dd age 11. She is the big helper of the family. Sometimes I feel bad that she has to pitch in so much, but I also know that it is building character.

My next in line is ds age 9. He has myleomenigocle spina bifida (the most common form and the most severe form). He has always been my "laid back" kind of kid. That's a blessing when we have a bunch of uptight girls (including me.) He has patchy paralysis from the waist down although from his knees down he is totally paralyzed. He has mild non-growing hydrocephalaus for which we are thankful that the dr's never saw the need to put a shunt in his brain. He does not seem to have any mental developmental delays. He doesn't have any problem with school work so far, although his neurosurgeon, wants me to keep him posted if it seems that he is having learning problems. It is common for these kids to struggle in certain subjects in school. I am not too concerned, all kids have 1 or two subjects they struggle with anyways, right? He has some weak fine motor skills, so cutting with scissors is not a favorite thing, and he also has overflow, meaning that when one hand does one motion the other hand mimics that motion. He lacks bowel and bladder control due to the level of where is spina bifida lesion was at. We have special ways of dealing with bathroom issues as some in the nursing field can imagine. He uses a wheelchair for going out to the stores, church, and he uses his walker for going outside at home or possibly to a playground. (Wheelchairs do terrible in the grass). He is a typical boy though with normal boy interests: bugs (high on his list), animals, fishing, video games and play guns, but he is not too interested in sports.

My other dd is 5. She loves her brother and is frequently commissioned by her brother to do his tasks and chores. As of late though, she is wising up to realize that she does not have to do all that brother says.

My last dd is 2 and never holds still. She is what we like to call our little "Ramona." Her hair she uses as her napkin. We frequently find chunks of food stuck in her hair. She gets many shampoos throughout the day. We call her Ramona because she looks disheveled just like Ramona the Pest does in the illustrations. Although she could never be labeled a "little princess", we still love her and think she's adorable.

[water2wine]

This could be a great thread for people wondering about what kinds of special needs is working with HOD. I enjoyed reading about you ladies. I will add about my dd as well. I have a dd 11 1/2 with moderate cerebral palsy. That is an at birth thing. It is essentially brain damage. She was a foundling so we do not know what the cause was but she was very premature they think 28 weeks gestation and she weighed just barely 2 lbs. I have two that are preemies and very low birth weight but only this one has special needs. In all honesty the other one should be worse but God protected her. Anyway we have been through all the therapy you all go through for years and we are blessed with a period of time of not needing it at this point. She has learning delays mostly in language and math so reading is delayed quite a bit. In am probably on the tougher side with her and push her quit a bit because I find her stubbornness can be used to my advantage.

Anyway HOD has been wonderful for us. She is very good at narrating in fact probably my best narrator in the group. I use different math and LA for her. Some of the LA things I do are not a program and sort of close to HOD LA but involve more writing and reading aloud just because she needs that. I love that you really can do what you want for LA and Math even substitute a science if you want (though we do not we have added but always do HOD science because we love it) and still have a great program. I can even do the order completely differently to fit getting all my time in with all my kids and it still flows. So we are set with HOD for the long haul. It's hands down the best thing for meeting the needs of my five with no learning issues while also meeting the needs of my one with CP. I find that is actually a tall order and tried many other things that did not bring peace before we found HOD.

[ahngele]

Nice to meet you and I am homeschooling my special kiddos as well. My oldest (8) was a 24 weeker preemie and has apraxia of speech and mmr, also he has lung issues and trouble regulating his body temp. He loves to tell stories and be read to, and is an emerging reader himself and learning to tell time.
My 2nd is 4, and was prenatally drug and alchohol exposed, he has lung and heart issues and wass gtube fed until he was 3. Very intelligent, very verbose, his main learning challenges are paying attention and obedience.
We are waiting in number 3, a 6 year old boy who was shaken baby and as a result has Cerebral palsy. I don't know the extent of his learning challenges yet but the info I have he appears to be pretty smart. This is to be our first official year with HOD although I used LHTH some last year with my littlest.
Welcome to the board and I look forward to chatting with you.

[LynnH]

This is a great thread to get to know some people on this board. I don't post much yet because we haven't officially started HOD yet. This will be my first year homeschooling. My son is 10 and in 5th grade. He has mild Cerebral Palsy that mainly affects his hands. He has tremors that greatly interfere with writing. He is a very hard working child and very persistent. He loves Legos, even though to watch him put them together with all the shaking his hands do you wonder how he ever gets a model done. He has some speech articulation issues and also reads slow for his age. He has struggled a little bit with comprehension, but has made great gains in that area this year and is on grade level now. He is great at math. He is pretty good at typing for someone his age and uses that or dictates things for me to write. He does better with cursive than manuscript, but hand fatique is still a factor. He is the one who asked for me to homeschool him because he always felt such pressure to keep up with everyone else. Since his issues are physical, not intellectual, the school had a tough time figuring out what to do with him. He picked HOD because he loved that it is Christ Centered. He says he wants to be a Pastor someday. He has the most tender heart of any boy I have ever met so it just might be that is where God will call him.

I also have a 14 y/o daughter that is in public school. She is gifted and has never had to work hard at anything. That brings an entirely different set of issues.

[spidermansmum]

JenO - I liked reading your blog- your family is beautiful.This thread is very encouraging.
I am Sam,I have five children -except some of them are not really children anymore.My big Girls are 20,17 and 13 and my boys are 6 and 2.Im homeschooling the boys.My 20 year old is intelligent,independant and hardworking.She is a product manager for an internet fashion company.Fashion is a big passion of hers .My 17 year old has just had her prom and starts college in september.She is my artistic,sensitive one.My 13 year old has congenital hypothyroidism - she struggles with short term memory [organisation] and handwriting[fine motor control] .She is in the talented an gifted program for science- she is our drama queen and reads any book she can get her hands on.She usually has several books on the go at once.
Now to my homeschooled boys.Nathan is a fantastic big brother.He is gentle and patient with his little brother.He also has aspergers and this is we found homeschooling .He is impulsive and generous,energetic and challenging. with an amazing vocabulary and drawing skills.We started HOD last year with LHFHG and it worked so well .It had short lessons ,lots of intresting activities to grab his intrest and an easy layout in th manual .We are starting Beyond next month.
Stanley is my 2.5 yr old and a little late with his talking but has amazing facial expressions.Its amazing watching him doing things - like serving pretend food or having a pretend phone conversation - that Nathan ever did.We are starting LHTH next month too.

[Carrie]

I am so enjoying the peek into each of your families and thought I would bump this thread to the top of the board, as I'm signing off today.

Blessings,
Carrie

[my3sons]

Thank you for sharing about your families here. I couldn't help but notice what love was etched in each thing shared. Isn't it amazing how we moms can describe each of our dc so well? I was just thinking how it is such a blessing to really know our dc through the blessing of having more time with them via homeschooling. Having 3 boys, I really depend on my homeschooling time to get to know them and share time with them. It seems like my dh knows them so effortlessly, while I have to work at it a little more. Our homeschooling time is near and dear to my heart because it is what we enjoy doing together. In summer (when we take a break from school), I have to work harder at staying in touch.

In Christ,
Julie

[kayben]

JenO, what a beautiful thread. I have been challenged lately with homeschooling my dd and after reading through this months This Old Schoolhouse magazine and this thread I realize the choice is obvious.

My dd 12 is a beautiful emerging woman. She loves the Lord so much and is involved in our Summer Missionary program at our church. She has a beautiful voice and helps me lead the worship at church. She will finish out 8th grade at our little CS this year and come home for HS.

DS 11 is a brilliant troublemaker...lol He is loved by all but has had trouble in school. He finishes his work (perfectly) in a short amount of time, leaving lots of time to wreak havoc on the class. He is coming home this year and can't wait! I am looking forward to extra time with HOD for him to persue some interesting projects.

Dd 8 is also very bright. She has a lot of selfish issues lately and I am reminded often that I need to lead by example. Like get off the computer and declutter Use kind words, etc. She can be so lovely and sweet, and then whine like there's no tomorrow. She loves to be home and is thrilled to be homeschooling again this year.

DDalmost 7!! was diagnosed with Unilateral Multicystic Dysplastic Kidney disease at my 20 week ultra sound. We found out this was not such a big deal as many people live with one kidney and after the initial shock we were ok. IT was supposed to just be absorbed back in to her system. It did not , it was odd shaped and kept changing shape and was removed at 2. Her left kidney remains echogenic and abnormally shaped so we obviously have very regular ultrasounds and check ups at Dupont. She was born full term but with IUGR. She silent aspirated for months before we realized it. She had pnemonia and was often hospitalized. She coughed nonstop, but we didn't get it. I was at my Dr. office a couple times a week before we were Finally we were sent to AI Dupont when she was 8 months to see a GI doctor for a consult. He admitted her for severe failure to thrive. She was 11 lbs. After spending a week there she was diagnosed with a genetic disorder but they didn't know what kind. She was also put on a tube feed for the next 6 months and we thickened all liquids for the next two years. She went to therapy for 18 months and began walking right around 2 and can finally kick a ball and jump off the floor at 6.5. She goes to a genetics doctor in Pittsburgh for what was finally diagnosed as SCAD when she was 5. This is a genetic disorder where her body cannot process stored fats. She must be hospitalized if she gets the flu because her body will begin to burn her muscle where we burned that lovely stored fat we have.. So, she is our most precocious and quirky child. She is an invader of personal space and is constantly falling off chairs... She is a blessing. We often forget about "all" she has been through because her disorders are internal. She repeated K this past year on my insisting. She will just turn 7 in Aug. She just got an IEP at school for Occupational therapy as writing fatigues her sooooo quickly. That was the main reason for holding her back. PS has tons of writing in the first grade. She will be doing LHFHG this year and I know it will be perfect. She really wants to go to PS. So I pray that she enjoys being home with us.

DD 4.5 would live outside if we let her! She is CM all the way. She is toothless in her adorable smile (had 9 teeth pulled last year for a combo of baby bottle and falling on our hardwood floors and cracking several) She also gets her cast off next week from falling off the bunk bed. She is a trooper and I can't wait to begin schooling her in LHTH and some LHFHG.

DD 3 is hitting her terrible 2's...lol She loves school though and is having a blast with A...A...Adam. She likes to follow the others around and bug them. I'm sure you all know what I mean. Yet, what a sweet angel when she falls asleep exhausted at the end of the day!! She loves to snuggle and truly does have a sweet heart.

DS 18 months. Our little man is just that. He loves to play with his cars and trucks. He makes little brum, brum noises and will fight the dog for the balls laying around the room. He has a fabulous disposition and will just toddle around and keep himself occupied. He did have a major seizure last month and has had lots of testing resulting in negative results. We will get a diagnosis of epilepsy if he has another one in the next couple of years. We were told there is a 50/50 chance. I feel at peace though knowing that he will breathe if it happens again. After all we went through with Cassie, I never allow the possibility of death to enter my mind. I did here, this was different and I felt helpless. I was so scared. He is totally fine now and I just pray that once was all there was.

So.... Long story when you get a little bit about 7! That is my motley crew and we really look forward to schooling with you for years to come!!

Rebecca