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.

Prader-willi syndrome awareness

The last 5 or so days have been a nightmare for my husband and I. Seriously. It's been a complete blur. I'm not even sure where to start. I have felt so weary...but today, as every other time of feeling powerless, God showed he was right there beside us.

A month ago A~man had to have a psychological evaluation done as it has been a couple of years and because he receives services through the state, and his yearly plan of care was coming up we were getting things in order. For reasons I still do not understand we did not get the results until last week. I was dumbstruck when I saw them. During the testing he was so cooperative for the 2-3 hours of testing, polite, and as appropriate as it is possible for him. We had thought that we were meeting the psychologist for the behavior part (this was more of an IQ/developmental test) at a later date. So to give the psychologist a heads up on some of the behaviors we experienced in the last couple of years he wrote them down as we do not like talking about them with A~man there. He is always listening and it cannot be good to hear a review of his past misbehavior. Especially since with PWS...some of them just cannot be helped! Also we filled out some types of questionnaire like tests based on his needs and behaviors.

As I said, for whatever reason we got the results last week when my husband went to fill out some paperwork at our service provider. They sat him down and told him. They told him that the psychologist recommended A~an be put in an institution. I am not in the least bit kidding. I have a few readers of my blog that know A~man and my family in person. Hopefully they will chime in and agree how utterly ridiculous this would be. This is something they did with children/adults with disabilities up until 30 years ago. Right before I was married I worked in an institution for a short time with the youngest they had and they ranged from 5-35. They were well cared for where I worked but to put my son and lock him away?

What was the Dr's reasoning? He said that he was a danger to my family. He has NEVER hurt his sister besides normal kid bickering and that is mutual and very mild. I have hurt myself a few times when I have had to restrain him. (disclaimer I am very trained! please never restrain your child without training.) In the past he has also slapped at me. That is spread out over the last few years and it's been over 6 months since that has happened. As a team my hubby and I have learned better ways to deescalate his behavior before it ever hits seismic proportions. We both work from home and we both share in the homeschooling and when one is weary the other steps in. It works for us. Evidently this Dr. hearing what we experienced came to the conclusion that we were merely treading water. Hogwash.

I won't say one of the particular behaviors that disturbed the Dr and our service provider. (unless you are a pws parent and want to know) The thing is the behavior can be common with PWS. PWSAUSA (Prader-Willi Syndrome Association USA) lists the problem on their resource page. The page I have linked is the basic facts wouldn't you think a psychologist and a service provider would KNOW this basic information?? Instead I feel like my husband was interrogated as if we had done something wrong. Fortunately we had been to his pediatrician at least twice for this issue and to another specialist to help with the underlying physical problem that caused the behavior. My husband ended up walking out in the middle of his meeting that day.

How did this affect us? We felt sick..and we were worried that the provider would call DSS thinking that we had caused his problem. I cannot remember the last time I heard my hubby sob like he did that night. Yes he sobbed! I do not remember the last time I have cried so much. We felt so helpless. What did we do? We gathered all of the information we could find about his issue at the PWSUSA website...and I found things in online medical journals. We became proactive and called his GAL (guardian ad litem) from when he was a foster child as she knows us well.(she became our advocate once again through this) We called his pediatricians and explained and got letters from them to give to the psychologist and service provider today. We got letters from a local merchant that knows our family well and from our pastor. Heck, we even called and talked to his old social worker from DSS! Just telling what they have observed from the A~man and what they observed from us as a family.

I didn't go today as I had to watch the kids but hubby went and he went fully armed. That includes a massive amount of prayer warriors and God was obviously right there beside him. What was there reaction? The service provider admitted he did not know hardly anything about PWS. I'm guessing all he knew about was the weight issues which isn't the main issue with the A~man. The psychologist also did a whole lot of back pedaling even though he said he KNEW PWS. We will not be using his report (we will find a different psychologist) but in the meeting he said that he didn't mean that A~man should leave our home. It was written down. Hubby left the 2+ hour meeting in peace...and brought that peace home to me.

I REALLY want to somehow make sure this doesn't happen to another PWS parent. Thankfully I knew that the particular behavior my son was having was pretty common because I was able to talk to a few wonderful fellow PWS parents on Facebook. I shudder to think what could have happened if my husband and I were not fully educated on the other issues that go along with Prader-Willi Syndrome. We would not have been able to advocate for him!

 Have I mentioned I LOVE my A~man???!!!

Stress for special needs parents

Recently I have wondered how parenting typical children compared to parenting children with special needs  stress wise. As parents we all have stress and obstacles. Several time a year we go through some really difficult special needs situations and we are currently smack dab in the middle of a HUGE one.

Today I had to go and talk to the case manager that keeps track of A~man's services and explain what has been happening this last month. I'm not a big talker, and to talk to this man about a VERY uncomfortable subject has drained every ounce of strength out of me. The anxiety I experienced talking about the issue hit a 9.0 on the Richter scale.  

 Meanwhile, he mentioned to me that he has recently discovered some major water damage to his home that he has only had a couple years that is going to amount to a lot of $$$. I feel bad for his family. What he has is a major financial hardship (btdt btw), and a disruption to his family, and mine involves yet a new challenging situation arising after thinking "what else could happen?" BUT I couldn't help thinking how I would trade my families current stress for his.

Mine doesn't involve any loss of money. Mine involves me getting very little sleep, when I do sleep I have nightmares, and my heart is hurting that what's going on can't be "fixed" (although we are arranging some new Dr appointments) and I'm clueless how to handle it. New things are popping up and I'm not sure if it is due to puberty, an imbalance (going to the endo to get some levels tested), him needing a medicine change or possibly some new stuff that was passed down genetically from his biological family. That leaves me looking for answers with a couple of doctors and possibly a counselor or child psychologist.The case manager suggested RAD. (A~man had very little physical contact until he came to us at 4.5 months old, it took him a LONG time to actually like being held as a baby) After talking to hubby and a good friend of mine though I do not think that is it. He has strong bonds with all of us.

I wonder. Do"normal" (what IS normal?) families have the same reactions to there everyday stressors as I do to my not so normal stressors? Does my body/mind get used to this periodic upheaval that can occur with special needs parenting? Also, due to the fact that we CHOSE this special needs parenting path, how does my journey compare with those parents that didn't choose this special needs path?

Oh and one last question. Has anyone seen my super mom cape? I seem to have lost it!

why I'm writing this entry at 4:44 am

Last night I went to bed around 12....and fell asleep about 1:30. Around 3:45 I hear my husbands phone vibrating and I think that maybe it's morning and that is the alarm. Nope. He checks his phone and a sweet young lady that has done respite for us was texting hubby to let him know that A~man (currently known as Stink Weed) has been calling her and talking to her on the phone. He told her he was afraid to put down the phone as he knew he was in BIG trouble. So...I go get my phone out of his room. The only thing I said to Mr S.W. is where is my phone??!! I had to walk away I was sooo angry. WAIT that is not all! I checked dialed calls. He called probably half of my contacts in my phone book plus some unknown numbers. REPEATIDLY!! This went on for an hour according to my phone. Yes my mom (who doesn't understand sn's) and sister was in the mix, some casual homeschool friends I do not know well,some friends I do know well, and a few numbers that I have no idea who they are. So after 15 minutes of crying (ME CRYING)and the hubby consoling me...trying to point out the funny side to it...here I am. (MAYBE I WILL SEE A FUNNY SIDE IN A FEW YEARS!)I cannot sleep and obviously most anyone I know,including Z's violin teacher have also had a hard night

I am soooo embarrassed. This has to rank up there in the top 10 of my life and I had some doozies in junior high.

I guess I should be glad he didn't call 911.

Excuse me now while I go crawl under a rock....please ignore all misspellings and grammar errors....

You know it's gonna be one of those days when.....

you wake up to find your son has chopped all his hair of with safety scissors. Yesterday he took a couple chunks out of it with my sewing scissors when my back was turned....or I was using the toilet....or doing something! I try to keep all scissors on top of the refridgerator but being the crafty bunch we are it's not too hard to find a pair if you are determined enough. WHY does he do this? I haven't a clue. He says he doesn't either. I'm guessing it is related to maybe the impulse control of the ADHD?? HE'S 10 THOUGH. I've learned yelling doesn't help (so I don't), swatting? no. So I told him he lost his favorite toy and cannot have soda till it grows out to a respectable length. Unfortunately it won't be grown in before the Vday swim party on Friday. My son will be the one with the baseball hat on in the pool. ;)

That pretty well set the mood for the day. Getting any school work accomplished was not happening. I think tomorrow will be a day off for us....to all get our humour back...a day of enjoying each other as it's getting to that point in the school year I am feeling burned out. The games and puzzles are out and waiting!

a side not normally seen....

of my son. Fortunately this only happens every couple months ago but today has been downright horrible.

I woke up and saw him. Somehow he got some clippers and tried to trim his hair. He has patches all over taken out down to the skin....including his eyebrows...they are half missing. It went downhill from there with rages, screaming, crying. (from him not me silly;) I put him in his room at one point and then he started screaming out the window. oh joy...I actually had to call my husband to come and get him for a few hours....I could not handle it...I needed quiet. So I went to bed for a couple house this afternoon while he was gone. Then to be nice my husband took us (plus the person he is help take care of) to Fudd Ruckers. (kids eat free Monday night) There is a big 7 foot wood bear in the entrance. In the past...and today I have to have him behind me to get him past the bear...it scares him. We are quite the sight. It went fairly well inside the restaurant until we told him he couldn't have a cookie. (he is allergic to peanuts) On the way home (30 min drive) he is begging for dessert.....we say no....he had rootbeer which is a rare treat in itself. Somehow we get him in the house and into bed and he is screaming....crying...

Tomorrow hubby is going to have to shave him bald tomorrow.....next Monday starts daycamp.....in a week is his Dev Ped appointment...I wonder what the dr will think of his shaved head and eyebrows.

I am so tired...not an ounce of energy left in me. Sleeping won't be easy though.