Understanding Child Brain Development DVD from The Family Hope Center~TOS Review)

 I was given the opportunity to watch a very interesting DVD recently called Understanding Child Brain Development from The Family Hope Center. The Family Hope Center is an international center that helps families that have children with special needs that include Autism, ADHD, Down Syndrome, and more. They do not believe in treating the disability but instead treating the part of the brain affected in a more holistic type of way instead of relying on medicine. I was especially intrigued with it as my son would be a strong candidate to be helped by an organization like this.

I think I have blogged about it before but we were blessed with my son at 4.5 months old as a foster baby. (he is almost 14 now) He was born with Prader-Willi Syndrome but over the years we have discovered he also has ADHD and is on the autism spectrum. Before he came to our home he spent much of the first 2-3 months in the hospital as he was also 9 weeks premature. Without going into too many details he was taken away from his biological parents due to medical neglect and other reasons. When he came to our home the back of his head was very flat (it actually still is), and his neck was atrophied to one side as he spent all of his time in a crib and most likely not held. 

One of the first comments we received from someone when he first came to live with us was "have they checked his brain waves" (what does that mean anyway, and who says that to a new parent?) as he was virtually non responsive. Well, until you tried to hold him. He did NOT like to be held but with help from awesome doctors, physical therapists, and occupational therapists (oh and I cannot leave out God!) we were given the support and guidance to help turn things around for A~man. We were told he might not live when we got him. Not easy for a couple that had been desperately waiting many years to become a parent. 

So getting the chance to watch these videos was fascinating! The first video I watched was Stories Of Family Hope which features families of children who have cerebral palsy, autism, seizures, and ADHD. (plus a brain injury) The stories were really well done portraying each family's situations whether detected at birth or later on. It also showed the children receiving intervention to help them. 

The next video was Understanding Child Brain Development and it was more of a seminar. My husband texted me while I was watching it asking how it was and I told him "it was a little dry, but very interesting at the same time". LOL It reminded me of a refresher college course, but I mean that in a good way. I did need a cup of coffee halfway through BUT it had a lot of very good information on it that I had just not thought about. It talked about the different functions of the brain and how different physical activities can benefit the brain plus the value of nutrition.

I was happy to see that over the years we have done many of the things- no microwave, daily exercise, sunshine, not food coloring/preservatives, mostly organic but I was able to obtain some new info that I hope to try out with my son. I found the "crawling' information very interesting as my son never crawled! He just rolled from one place to the next. I'm not sure I can get him to do it but it's worth a try. I'm just going to tell him it is an exercise to make him strong. ;) 

The Newell's gave some practical advice for families to help their families have better health which included understanding the child and working together, nutrition (eliminating EMF's), structure work, basic sensory stimulation, neurologically based mobility programs, and consistency. (schedule, emotional and social support) 

To order the DVD you can call 610-397-1737 or you can order Understanding Child Brain Development from the Institute for Excellence in Writing for $19.00. The video is targeted for parents and adults.

Year End Countdown

Just last week I finalized a date for our end of the year homeschool standardized testing. We have always used the Woodcock-Johnson III Test of Achievement and up until now, (it's our 7th year!) we have always used the same tester. This year our tester stopped administering tests so we had to find someone new which caused me a wee bit of anxiety. Anyone would be able to test Z~girl but that isn't the case with A~man and his special needs. Our former tester suggested this new person so I am sure it will be fine. I am hoping that she can meet A~man once before hand just to get a feel of how his mind works.

The test is scheduled for the middle of June so our last "official" day will be the Friday before the Monday testing. What does that mean for us? We pretty much do year around homeschooling as my son needs the routine and the repetition or he will become bored (meaning behaviors increase) and he will not retain some of the information he learns. What we do is take a break from our online curriculum and do more exploring and hands on activities.

 I try not to worry about testing. I try. This year for A~man academically I have solely focused on reading, spelling, and typing. Of course we work on other things, especially life skills informally but this year I decided I REALLY wanted to improve his reading skills. I feel like they have improved immensely. Of course as a homeschool mom sometimes we worry that the end of year testing will not show what has been learned. I have a love/hate thing with testing.

We do not really use "grades" in our homeschool and every time someone asks one of our children what grade they are in they look at me. Sometimes it takes me awhile as even Z~girl's learning material varies in levels. Technically though A~man would be finishing 7th grade and Z~girl would be a young 6th grader. Which brings me to the realization that in two years I will be thinking of high school homeschooling. *GULP* Thankfully I have sweet homeschool friends that have paved the way before me... that will hopefully be able to give me advice by that point...and offer me a tissue.

Those of you with little homeschoolers. ENJOY. Time really does go by very fast. 

Planning for next year

I may be the only person that doesn't already have a solid idea of what we are doing for sure in our homeschool in the fall. We really haven't stopped for the summer. Sure, we take some days off but A~man is working on reading and Z~girl never stops reading. I was an avid reader as a child but I think she has me beat for the amount of books she has read at almost 11 years old. She has more opportunity all year long, as when I was in school, we had a lot of busy work that was required. We do not do a whole lot of busy work...unless it appears they need some. ;)

Here is what I do have planned for this year. We will still be doing our online curriculum and we do this about an hour a day. We will be doing these unit studies for science in addition to some nature notebooking. For Z~girls Reading/Language Arts we will be using this curriculum. I also want her to take an online writing course this fall. I'm still trying to figure out what to use for history that doesn't take a lot of planning...and this is also a subject that I love, but that I need help with. (it was definitely lacking in my education growing up) Math? I have no idea what to use.

For A~man right now I am concentrating on him relearning all of the dolch sight words. So this summer I have really been concentrating on him learning to read better. We are slowly going back through the sight word list and I have been making some worksheets I found online for the words. (we do not normally do a lot of worksheets so he is enjoying them!) With his special needs it always seems like it is two steps forward, one step back...with everything. But seeing that he is progressing really does make it awesomely rewarding!

It continues to be HOT here and I'm hoping to do my first tutorial in my blog this week! (it's a fun, easy, inside project) Z~girl had a birthday party to go to yesterday so we made the birthday girl a backpack. I have made many of them and hope to share how incredibly easy it is to make...and the best part is you can find what you need to make it around the house. If you do not have a sewing machine it can also be sewn by hand. 

the R word- Retarded

Do you know one of the few ways to get this woman riled up, heart beating outside her chest, steam comin' out of her ears? (well besides using the Lords name in vain) Say the R word. I am a very calm, patient, tolerant person. I am a big fan of letting stuff roll off my back. (well outwardly...sometimes it builds up) It takes a LOT to tick me off. You get the point.

Tonight a sweet young lady dear to my heart said this word in a FB status. This isn't the first time. I've heard it before from people on my friends list. Normally I just ignore...while seething inside. I couldn't this time. As nicely as I could I reminded her that her cousin close in age to her is mentally retarded. She promptly removed her comment and apologized. Will this cause this person or others to stop using the word? Probably not. BUT maybe it will make them think before they speak. I know words that you hear often get stuck in your head and you repeat them. This R word I'm finding is a word that is popular. Most people (like the one on my list) do not mean it to be derrogitory against people that actually do have special needs. It's just the word to say to someone that may not be acting the way you would expect them to. (at least that is how I see it)

What do I say about this? My son IS mentally retarded. Of course due to this becoming such a crass word it is no longer a medical diagnosis but instead the meanest thing you could say to an individual. My sons diagnosis causes him to have to work many times harder physically and mentally to achieve a goal. I still in my mind can picture his sweet face looking up when he was working on lifting his head as an infant. Or his first steps when he was older than 3 years old. He has defied every obstacle that a doctors diagnosis has put on him. He has surpassed it by leaps and bounds. Still his progress is slow. It is often 3 steps forward 2 steps back but he keeps trying...he keeps achieving and most of the time with a brilliant smile on his face. I've got to be honest with you. My son A~man has MANY more friends than I do and more people like him than they do me. He truly does have a more endearing personality than I do by far. I should be jealous huh? No I'm just proud to have him as my son.

Think before you speak. Some of my favorite people I have ever met are "mentally retarded".

Learning to walk!

Learning to talk! (and paint:)

Let's face it...just being COOL!

                                                                                                                                                                                                                                                                                                                                                                        

Sharing with his life long best friend. YES that is the Z~girl! (he wasn't supposed to be giving her popcorn!)

Oh and last but certainly not least a NOW picture of this awesome child I call son.

                                                                                          My 12 year old hero!

Reasons for homeschooling

There are many different variables on how and why someone chooses to home school. Some families choose based on their religious beliefs and choose Christian curriculum and others choose a more secular homeschooling route. These are just a couple possible reasons. Depending on each state's requirements parents are able to make the choices that are best suited to their family. Our reasons for homeschooling were that the public school was not meeting the educational needs of our child with special needs. They quite honestly did not know what to do with him and were not open to us trying to work with them to make it work. The attempts they made in the the first of his kindergarten year were very hard on all of us mentally.

Fortunately homeschooling was a good fit for us. I will be the first to admit some days here can be difficult. We are able to get through those days with love, patience (most days;) On the days that our patience has met it's limit we are able to forgive for the occasional harsh word. (grumpiness...me! ;) Fortunately the good days far outweigh the challenging ones! Although not all of our curriculum is Christian based (but it doesn't contradict our beliefs) we depend on our faith in God to help us all, even hubby and I, to try and achieve our  individual bests.

Stealing

I curse (haha) the day I discovered the tab STATS. I must stay away. I have more looks than ever...but hardly any replies. Hopefully something I say helps, blesses, or makes someone laugh. Even you Goth people watching me....snicker.

It's been awhile since I posted about a Prader-willi syndrome issue and what do you know an issue popped up tonight. A~man is doing well with his drum lessons. I cannot say enough about the young man teaching him. So patient. On Thursday nights hubby takes A and Z to church and A~ gets lessons as the church band practices. Seriously my son loves music almost as much as his desire for food. (not joking) Meanwhile I get almost 3 hours of complete SILENCE. This is a novelty. I do some work online and clean house. I love this chunk of time.

On the way home hubby stopped at the store for a few things including flavored waters (the yummy calorie free ones with no sweeteners just natural flavoring) for the kids. On the way to the cash register hubby turns around to see A~ trying to stash gum into his pocket. This isn't the first time, won't be the last, but it rarely happens at a store. I'm grateful as shopping with A~ has always been pleasant...no more tantrums than the average child which I believe is not the norm for PWS. A year ago he pocketed a small toy at the toy store. We didn't discover it until we were home but we called the toy store (small/local) and told them NOT to be nice when we came to return it. It seemed so hard on the owner as they all LOVE A~ they have known him since he was wee. We buy a lot of our home school educational games there. We love this store. I was grateful though that in this case the lady was stern with him.

Stealing is just a part of PWS as hard as it is to write. Fortunately we do not have an issue with it often as hubby and I have both grown eyes in the back of our head. As far as a punishment he did not get the flavored water. When he got home and hubby told me I prayed with him before bed. I prayed for him and he prayed for God to forgive him (which God graciously does and He understands A~'s limitations) and to help him do his best. That is what we all should pray for right? For God to help us do our best.

~~~ for any lurkers (excluding any of my local/online friends although I would LOVE a comment from you too;) I would love to see a new person make a comment. Just to say "hey!" (as we say here in the south)

Oh and a picture for your viewing pleasure of the weather we have been having.

Retarded

I do not know of a word I hate more than this word. Well....saying the Lords name of course I hate more. I cringe when we are out and I hear it. (oh and I do not mean when it is used to explain a diagnosis but that term has changed to intellectually challenged I believe)  I cringe when I read it on Facebook...or anywhere. I saw this video posted on FB and it is so powerful. Such a wonderful young lady this is.

Raingutter Regatta = extreme anxiety for a mom with a child that has Prader-Willi syndrome

A~man has been in scouts for 3 years and is now finishing his Bear year. I will admit that I truly only do Boy Scouts so A~man can have social interaction with just boys (which is a challenge for him)...plus the leaders are awesome, accepting and inclusive. Also I love the activities they do which are SO what our family likes to do with it being nature and the big outdoors focussed.  Most parents...or so it seems...go 101% with their boys in scouts. Admittedly I do about 75%. I am hoping I can pull it together so he can complete what he needs to for the year. But on top of geography club,  drama club, Brownies, 4H, Z~girls running club, Z's soccer, A's occupational therapy and HOMESCHOOLING...I am doing the best that I can. So I am really praying about what I need to do as far as activities for next year. I am a homebody and haven't been spending as much time at home as I would like!

Tonight we participated in the Raingutter Regatta . We go to meetings and a couple other extra events but due to hubby's work or our busy schedules we do not go to the extra stuff. Infact I have avoided the Regatta like the freakin PLAGUE. Why?  The boat part I am fine with but when they are finished they fill up the raingutters (foil over the top) with ICECREAM and the kids eat out of it. Now I am not a germ freek so that is not the issue at all. But as a mom of a child with PWS it is emotional for me. A typical child may eat and eat all crazy like but y'know what? he WILL get full...or throw up. A child with PWS does not know this "full" they would eat and eat and eat.  I was feeling such anxiety about it and wondering if it would end with me dragging him to the car. But you know what? That did not happen. YES I let him eat more icecream than I would normally do but then I whispered in his ear "3 more bites" then you are finished. I underestimated my boy...he was just fine and walked away. He did brag about how much he ate but so did all the other kids. This gives me hope that maybe...just maybe as he grows older he will be able to walk away from food...or at least be redirected to something else.

It's all about perspective

Today I decided to do some math review over things I thought (thought is the key word here) they knew. Z~girl did pretty good. A~man...it was as if he had never done it before. For A~man it was telling time up to each 15 minutes. NOPE. Also a worksheet with several coins to find the total and I also had real coins out as I know when he was tested last year he wasn't able to do it with unrealistic coin pictures. NOPE. He could still identify the coins and their value but not with several coins adding them together. He was frustrated and I was deflated like a balloon. See he wasn't being non compliant although he was a little spacey...I honestly think he forgot...along with a wee little Z~sister voice reminding me "do not fuss at him I think he is really trying!" (my voice of reason this morning) So I decided it was time for a break.

We stepped out into the sunshine, the warmth, the breeze and I know I exclaimed ahhhhhhhhh! PERFECT day. I walked the dog around the yard and remembered a different time when we first moved to this house gosh I think it has been 5 years. Back then Z was almost 4 and A was 6.5. In the last 5 years he has changed so much! I remember step MIL helping to watch the kids while we unloaded things. I remember coming outside and seeing A running from our yard to the house behind us that is quite a ways a way. MIL couldn't catch him so I caught him. This happened many times. I remember coming into his room one afternoon when he was taking a nap...or so I thought...to see him climbing out the window. This has been more recent but I remember the walls in his bedroom before we had them redone this past year. You see he had created 2 holes..(fist sized)...one beside his bed and one behind his door and picked and picked the wallpaper, the sheet rock paper all the way through the wall. Up untill a few years ago he was still "fingerpainting" (you do not want to know WHAT) all over his walls. He used to fling all kinds of things (again...not going into details) down the air/heating duct in his room causing the whole house to smell like....well you do not want to know. He used to constantly hug strangers...we have narrowed that down to friends although he needs to ask before grabbing people..what can I say he LOVES people. He no longer does these things! I need to internally celebrate that! He IS advancing, maturing, sure he has some new "issues" but thank goodness these old ones are past us! I have no doubt he will be able to learn basic math...how to use money...tell time I KNOW he has the ability...but it is on his schedule not mine. (Joy repeat this 100 times "his schedule") I truly believe he will keep advancing on his reading...s l o w l y...but he will be able to read functionally as an adult. I WILL insure this. ;) I also need to celebrate his knowing and understanding about God...He is growing up to be a Godly, caring, sympathetic man. I love him so much!

Here is a picture. Most I put on my blog I have taken but this one was taken by a good friend this winter.

Mom I'm hungry....

This is a common thing for kids all age to say right? It's a sad thing also when you hear about children in other countries that do not have food or the means to get it. I have another version and very heartbreaking for me.

A~man just turned 10 this week...yippee but I will save that post for another day. Tonight (3-8) he was with his respite provider at our church that has a special needs classroom. They have a day placement for adults with sn's but A~man is kindof like their special mascot haha and in the summers he is there with the rest of the younger children with sn's. But Wed's are his special afternoons without mom or dad hanging out at his favorite place on earth...church. While he was there we took Z~girl to go swimming for some more one on one attention. (or is it two on one?:) While ds is at church he hangs out in the classroom socializing then he goes to eat as they serve a meal on Weds. I'm not sure when things went bad...I'll find out more details tomorrow...for now I know enough. Hubby went to pick him up from church....he was throwing a fit screaming bad bad stuff...he had to carry him to the car. Keep in mind this is a HUGE church...geesh I wonder what people think? He is so high functioning that when he falls apart I know people must think he is just a bratty kid (he's NOT) that must have been raised by wolves....ok I gotta chuckle...but he has autism thrown in there which is a double whammy on self control.

Anyway this entry has no rhyme or reason...I'm rambling...just need to vent. He gets home in hysterics....dh has to go back to work:( and I could not get him to get ready for bed. He sits on the couch and starts saying he hasn't eaten dinner and he is hungry.....just crying "I"m so hungry please feed me!!!" Rip my heart out already....Did I feed him? No. I know he had been fed....so I just held him on my lap and let him cry....finally I was able to get him to jump in the shower with the promise when he calmed down he could call daddy. He wanted to tell daddy he was sorry for the way he acted. He also was telling me he wanted Jesus to forgive him....(he screamed he hated Jesus in church) RIP MY HEART OUT AGAIN! stomp on it too....

I just instantly thought of GRACE. I told A~man that Jesus forgave him .....he did it long ago so he could forgive him now. I told him that God loved him VERY much.

I am exhausted.

feeling overwhelmed....

It's been such a wonderful end of summer....begining of fall! Meeting a wonderful new group of homeschool friends....tons of homeschool events that are absolutely wonderful...no complaints there. In fact for the first time in ...gosh who knows how long...over a year I am going out with friends to a movie! no KIDS! woohoo! Our family has been on some many nice new hikes to local places we have never seen and the actual HOMESCHOOLING is going so well! Z learns so easily despite what I have no coined the "GIRL 'TUDE"...A~man is trying so hard..I have found such a wonderful match of curriculum...it's hard to fit all the fun learning in a day! I have also started trying to relearn crocheting...and also have been sewing. Oh and add in the exhibits we entered in the fair..I need to post pictures!!!

Now for the OVERWHELMED. My house is awful. A complete mess. Now there have been times when it is cluttered (there is no hope for me there with my love of books and fabric) but it needs scrubbed top to bottom. WHEN? Now just a disclaimer it is not "unhealthy dangerous dirty;)" but YUCK. My downtime is in the evenings I can't survive without it honestly. I do have someone doing respite with A~man once a week now for about 4-5 hours....but during that time I or we, if dh is not working like to spend extra time with Z~girl. Oh and we just joined the gym...where will I get the extra hours/energy for THAT??? ROTFLMAO.....

Aye aye aye....I need a housecleaner. Now I know in the whole picture I am accomplishing the IMPORTANT stuff....but geesh it would be nice to not be embarassed if the doorbell rings....you know instead of hiding in the closest......JK.....

Baby girl

Chris got a message from the SW today saying the birth family loved the profile we sent them. Our GAL apparantly also called but we haven't been able to touch base with her on the phone. There are so many things we have to make sure of with a special needs adoption...one making sure she would get medicaid. A-man gets medicaid and there is NO WAY we would be able to pay for his medical expenses without it.

For some reason I'm a bit discouraged about the situation today. I just keep praying though that even if WE are not the family meant for the baby that God does find a family for her...and he gives me the strength to DEAL WITH IT. I want one more.....before I'm 40.

My sons first run in with the law....at 9!!

Geesh. Guess where he got in trouble with the law??? CHURCH of all places. Today Chris stayed home with Z because she was sick. A-man wanted to go and so did I so off we went. I have a major problem with crowds normally so I'm embarassed to say I've never went to church alone...except maybe in college. A-man went to sunday school and I went to service. I had no anxiety and completely enjoyed the service.

I'm walking downstairs to get A-man and he is sitting by the door in a chair with his SS teacher on one side and a POLICE OFFICER on the other side. The church we go to is very large and they do have security always present and several officers walking around at times. The details I got are sketchy and 75% of what A-man said is obviously a made up story. Chris is waiting for his SS teacher to call him back. I do know he kicked another student in his class (a lady with CP in a wheelchair). Then he was taken in the hallway and he kicked the teacher..somehow the officer got involved...he kicked him, tried to hit him and tried to take his GUN. :( He was also very verbally threatening. When I got there I just knew the junk had hit the fan. I about panicked as he was refusing to stand up and he's too big for me to pick up. The police told me a bit of what he was doing. Then A-man tried to grab the police again. THEN he (my son) said some VERY BAD THINGS. This is a huge church....wait I said that;)....everyone was staring. I wanted to crawl under a rock. My heart hurt so bad. He can have some extreme behavior but it is few and far between. I do not remember the last time he lost it. This was the wourst. My head has pounded all day. Heck I took a LONG nap most of the afternnoon. Chris is on the phone with the teacher right now...I guess I'll found out some of they why's soon.

I may finally be crazy...

LOL! Tonight someone on a parenting bb sent me a message telling me about a 2 yr old with PWS that needs a forever home. The child has been in the hospital most of it's life as the family doesn't want her. HOW could a family not want their own child? I can see not being able to care for a child due to high needs. Maybe that is it. Geesh I would LOVE one more. We could give this child a whole lotta love. DH is extremely hesitant due to $$$ worries...but if God meant for it to be He would provide. He always has before. DH said he will call tomorrow to talk with the SW. It's in God's hands.