Saturday, May 19, 2012

Crossing the Monkey Bars.

  It has been awhile since I splattered my thoughts and feelings on here.  I've been reading The Out of Sync Child and learning so much about SPD!  I've been beginning to notice more of Nathan's "triggers" and recognizing when he needs some help.  I've also noticed that some of the things that have bothered me my whole life are due to sensory issues.  It all makes so much sense now, but I'm not going to get into that!  At least not right now. 
  Because I've been a little more stressed than usual lately, I've been finding myself getting overwhelmed rather easily.  Today for instance, we went to lunch at Duluth Grill with some friends.  I was really tired, not really feeling that great and it was packed in there.  There was way too much going on at once and it was hard to focus on what was going on.  Well, I could tell immediately this was overwhelming Nathan as well.  He was pulling his shirt over his knees and constantly touching me.  He was in my space the whole time we were there.  Snuggling with me, tapping my arm, talking excessively, wanting me to read to him.. etc.  I had him hug his knees to his chest, and rock front to back and side to side for a bit, but that didn't seem to help.  I tried to help him breath slower because he was practically panting, but that didn't help either.  He just needed to be snuggled.  Since I was out of sorts I could barely handle him touching me.  It took EVERYTHING in me not to snap!  I finally had to tell him that I needed some space, but that only lasted a few seconds before he was touching my arm again.  I wanted to snap a fork in half because I was so agitated!  Luckily I didn't snap at him and we survived lunch!  If I was feeling that crazy due to being overwhelmed, I couldn't imagine how he must have been feeling! 
  When we got home, I did some sensory therapy with him which seemed to help him calm down.   By this point I was so tired and overwhelmed that I felt like I was going to puke all over the place.  I took a 2 1/2 hour nap and woke up feeling like poo.  However, after some time in prayer and forcing myself to keep things simple and slow for the rest of the day, I felt better.  We went outside with the kids, and as part of Nathan's therapy I've been having him cross the monkey bars. Before today, he'd never do it without me holding onto him.  He has a weaker upper body so it's really difficult for him to cross them.  However, after a few tries of me barely holding onto him, he hopped up there and crossed them all by himself 2 times in a row! And then that's all he wanted to do!  He probably crossed them 10 more times throughout the evening.  I was so happy for him!  He had this sense of achievement about him.  He said, the kids in school are going to be so surprised when they see him crossing the monkey bars at recess!  I never thought that anything as simple as crossing the monkey bars would bring hope to my heart.  It showed me that he's getting stronger, and it gave him some real confidence.  Such a huge change from yesterday! He also asked me to do the "squeezes" to his arms tonight and give him a hug.  He must have knew he needed it in order to sit down at the dinner table and finish his meal. In the past, he would have gotten up a ton of times just to move around.  
   Speaking of yesterday, when I went to pick up Nathan at school for his OT appointment, I could tell immediately just by looking at him that he was having a rough day.  The neck of his shirt was saturated from him chewing on it and he had it all balled up in the middle from squeezing it. When he was close enough for me to see his face he looked flat out miserable.  Normally, he's excited when I pick him up, but this time he was just quiet.  I pulled him for the rest of the day, which I probably shouldn't have, but my heart was broken and I wasn't thinking clearly.  I had a feeling when he woke up that morning from a bad dream that he was going to have a rough day.  After he ate his lunch and went to OT he was a lot better.  He seemed like a totally different kid!  He could have went back to school, and even wanted to.  But I wanted him to try to get some sleep.  Which, he didn't. 
  While at his appointment, Kate told me about some tools we could get Nate.  Unfortunately, they're not exactly cheap, and insurance doesn't cover them.  Getting him some chewy's for him to chew on in school and other times he needs to focus would help immensely.  It's $80 for 12 of them!  Or $6 for just one.  And I could probably guarantee that he'll lose it the first day he brings it to school.  A weighted vest is anywhere from $40-$300, and luckily we don't have to buy a weighted blanket because a friend of ours is blessing us by making him one.  We just need to get the material which is soooo much cheaper!   It's hard not to get discouraged when I see all the expenses.  It's also frustrating that I can't just go somewhere close and buy them.  They need to be purchased online or from a catalog.  
Our OT is great with Nathan and gives us great activities to do with him to help, but when it comes to asking her what can be done to help him in school, or about things to purchase, the answers just seem vague.  I'm so new to this, that I need things explained more.  But time is so crunched when we go there, it's hard to ask the questions I need to ask when she needs to focus on Nathan.   
  I did get him some Omega 3 + Vitamin D vitamins.  It will help with his brain function.  I'm also trying my best to cut out artificial dyes, and sweeteners from his diet.  I cannot believe how many foods have artificial dye in them! It's definitely making grocery shopping take forever!  But I'll soon learn what not to buy.  
  Man, what a long post.  I'm off to bed! 
Goodnight everyone! 

Tuesday, May 8, 2012

One hurdle at a time.

 Well, yesterday was a bit of an emotional day for this Mama.  I found out that Nathan will need more at home therapy than I expected, and I felt very discouraged about it.  It turns out that due to his inability to locate his body in space at times, he has underdeveloped muscles in his trunk to shoulders area.  So basically, the upper half of his body is pretty weak compared to kids Nathan's age.  This weakness even causes him to breath heavier than he should at times.  So, there's therapy to help him breath properly, therapy to help his muscles develop, and therapy to help him locate his body in space.  This will require us swinging him in a hammock (which thank GOD we have one!) from side to side and front to back.  This will help his vestibular system to basically center itself.  Also, because of this vestibular issue, Nathan is unable to locate where sound is coming from.  So, for all those times people have shouted to him across the room, or the yard, or where ever, and he didn't respond, he wasn't ignoring you.. He literally could not process where the sound was coming from, therefore he didn't turn towards it, or hear it for that matter.  Kate, our OT, said that the only way Nathan really responded to her was when she stood directly in front of him.   So, because of this, Nathan will need audio therapy twice a day for 30 minutes at a time every day.  Right away my mind was filled with discouraging doubt.  How am I going to get Nathan to want to do this twice a day, every day for the next 8 weeks for 30 minutes a pop!? On top of that,  when I dropped Nathan off at school, his teacher informed me that since SPD is not considered a "medical" issue, the OT at school is not funded to help kids that only suffer with SPD.  So basically, the school cannot provide OT for Nathan.  The only way he'll get it is if we supply the supplies they would need.  I'm ok with giving the supplies.. What got to me was the fact that the schools don't consider SPD a medical issue.  His nervous system is all jacked up!  How is that NOT medical?  My child can not process things the way a "normal" child can.. How is that not medical?  It doesn't make sense to me.  Don't get me wrong, his teacher is incredibly helpful and she still has regular conversations with the OT to see how she can help Nathan... I was just pissed off at the system.  I don't think people realize how difficult these kids with SPD have it.  People need to be more aware of this!  These children need help and support.  Without it, they face horrible self esteem issues, they may lack friends, and be filled with confusion and anxiety.  These children are often set up for failure as well.  They cannot complete some normal every day tasks that someone without SPD can.  For instance, if Nathan is sent into his room to pick up all of his dirty socks, he may miss the ones that are right in the open.  Not because he wasn't looking, but because his system gets overwhelmed by how many other things are in the room.  I just thought he was being lazy, but he literally couldn't see them.  Imagine sitting in a room full of things and not understanding why your mind can't seem to focus on just one simple thing... Nathan explains it by saying "his brain feels dizzy."
It frustrates me how overlooked this disorder is.  These kids have a chance to have the confidence and abilities of a "normal" child.  But without help, chances are they won't get it. 
  On a lighter note, Nathan and I had a talk over our lego building time last night.  I asked him how OT was going.. He likes to call it "central therapy"  and he LOVES Kate!  I don't know how he came up with central therapy.. but I think it's cute.  He said it's really helping him and he likes it a lot so far.  I asked him in what ways he thought it was helping.  He said, "you know, it helps me make my brain stop. I stop wiggling so much,  and I can pay attention more in school.  And I'm not naughty."  He said he wishes that Kate could move in with him so he could have "central therapy" all the time.  It's cute.  I love how he just thinks the world of her.  I think he sees her as the one person that really understands him.  I thank God for that.  
  Last night I got a glimpse of the muscle weaknesses Kate was mentioning. Our neighbor went to push Nathan down the slide, and since his upper body is much weaker than normal, Nathan just folded in half and tumbled down the slide, scraping up his side, smashing his glasses into his face, and hurting his tummy.  A kid with more steady upper body strength probably would have just gone down the slide, but Nathan, not so much.  It didn't help that the boy pushing him was a lot older and stronger, and it didn't help that it caught Nathan off guard either.  But he just flopped like a rag doll!  The Mama bear in me broke out and I snapped at poor Allen.  I felt bad for Allen, but I felt even more badly for Nathan.  His body is still sore today to the point that he cried after getting dressed because his underwear scraped his raw skin when he put them on.   
  Ugh, I'm just getting to the point where I want to scream at the people who call him naughty, or yell at him for not listening to them.  I just want to scream into my pillow sometimes.  Ask God why my little boys heart has to hurt so much?  Why do the schools not find this disorder serious enough to want to help these kids more?  I want a voice, I want to inform people that this is serious, and it needs to be looked into more.  Know your kids!  Know their actions and behaviors, and if something feels a bit off and your gut is telling you something about it, listen to it!  Help your children!  Because if you don't, no one will!  Set your kids up for success, not failure.  Don't let fear of how a diagnosis may reflect on you as a parent.  It's not about you, it's about your kids.  1 in 20 kids have sensory issues.. Some pretty serious, some not as serious.. But they all need to be acknowledged.  They all need some sort of help.  Read about it, be informed and do not fear a possible diagnosis.  There is help out there and there is hope!  Nathan's future will be a lot better now because he's receiving the help that he needs.  And now, I can say I understand him so much more.   There were so many signs that he displayed since he was an infant.. I probably would have recognized the signs long ago, like around 2 years of age had I known them. 
  I'm hoping to convert a part of our basement into an integration therapy area.  If anyone has any old bean bag chairs that they want to get rid of, I'd love to take them off of your hands!  As long as there are no holes.  (If they're patched that's fine)  Thank you all for your support, your kind words, and prayers!  I can't tell you enough how much I appreciate them.  And I know Nathan will someday too. I will not give into guilt from actions of the past, but I will hang onto Jesus and the hope that he provides.  Nathan has the help he needs now.  Nathan has a chance at a better future, and a chance to be understood.  
  

Friday, May 4, 2012

A big sigh of relief!

  Todays appointment went great!  I felt so relieved when our OT noticed Nathan's sensory seeking behaviors immediately.  She said "oh we have a little sensory seeker here."  All I could think was, YES!! Yes, I DO know my child,  this is not just all in my head!! She said exactly what I thought was going on with Nathan.  His body is seeking sensory, however his ears are sensitive.  So he has a combination of over stimulation and under stimulation.  He'll be starting OT this coming Monday and will go every Monday and Friday for the next 8 weeks.  After that, she'll decide what steps to take next.  We'll be doing home therapy as well.  No plan for school quite yet.  That will come with more evaluation from the OT.  The school doesn't have OT as a stand alone service.  In other words, since Nathan doesn't have any other underlining issues or DD, he doesn't qualify for OT at school.  Nathan's teacher however is going to see if there's anything they can do. 
  It was so much fun watching Nathan "play" in the Sensory Integration (SI) room!  Oh how he loved it!  I think he's going to have so much fun in OT!  He really seemed to enjoy Kate too.  She's our OT. She's great with kids and really seemed to understand Nathan and catch onto his personality quite quickly.  Dan and I both had a good feeling about her, and we look forward to working with her. 
  I can't wait to see how OT will work out for him.  I'm so glad we'll be starting right away!  The only downside is, his appointments are in the morning, and that's exactly when I do not have a car. :(  My mom is willing to let us use her car and watch Jovie on the days she doesn't have anything going on.  That's a plus! But I can see that that may get to be a lot for her after a couple of weeks.  Man, it would be so nice to have a second car.  I haven't felt the pinch of really needing a second car until today.  Oh well, I know that everything will work itself out.  God has been so faithful up to this point and I know He'll see us through this.  
  My sadness for Nathan has turned to hope.  My nervousness has turned to joy.  He was like a kid in a candy shop when he was in the SI room!  Giant things to swing on, stuff to jump off of, giant bean bags to throw himself into, games to play...  It was amazing!  I wanted to jump right in and play with them!  
  Now, I can breath.  Now Nathan will have the help he needs.  And we'll be taught how to help him here at home.  Oh, the relief! 

Thursday, May 3, 2012

A BIG thank you!

  I want to thank everyone who has given me words of encouragement, pointers on how to help Nathan, and love.  I feel like God has brought every each one of you to me to show me that we're not alone, to show me that there is support, and to show me it's ok to just let it all out, so to speak.  
  I can feel God is with us during all of this.  He has shown me so much love and given me so much strength.  He has blessed me with a boy that is so receptive to prayer and that is a huge help! 
   It's so hard to see a loving boy like Nathan struggle with believing he's a "bad" boy.  It's heartbreaking to see him so broken down after a hard day.  It is amazing though how fast prayer can change things around for him!  Sometimes he'll come up to me feeling anxious about going to school, or crying because he had a bad day.  After 30 seconds of prayer he's like a new boy!  God has been so incredibly faithful through all of this!  I love that ever since Nathan was 3 1/2 he has known that prayer makes him feel better.  When he was at his early childhood screening, he was exhausted.  They wanted him to do one more activity and he wasn't having it.  He was just shy of 3 1/2, it was his first day of pre-school, he had no nap, and he just wanted to go home to have a snack.  I asked him, "what can I do to help you get through this last activity?"  He answered immediately while crawling into my lap, "prayer!"  So, I prayed for him and not even a minute later he hopped off of my lap, and finished the project just like that!  Scoring well above average too!  It was like God flipped a switch in him.  I wonder sometimes if the woman that was helping us noticed.. I wonder if it planted a seed at all.  There was another time when Nathan was incredibly sick and in a lot of pain at the Dr's office.  I asked him the same question as he was screaming in pain.. What can mommy do Nathan?  He cried out with big crocodile tears streaming down his face "praaayyyeer."  It just amazes me.  It amazes me that this little boy knows, he KNOWS that prayer works! Thank you Jesus for that!  Thank you Jesus that every time I pray for my crying, scared, little boy, that you show up and take those tears away!  I am so grateful to know my loving Father in Heaven.  I am so grateful to know that He's on our side.  I can't take away Nathan's tears, I can't heal his hurting heart, and I can't stop the lies from seeping into his brain like some sort of poisonous sludge.  But God can.  I don't know what I would do without Him. I thank God that I have him to protect Nathan.  God's love has been so prevalent through all of this!  Once again, He has swept in to take care of my aching heart.  And I get to watch first hand as He takes care of Nathan's. 
  Thank you Father that you are a God worthy of all our praise.  That you are a God that doesn't force us to kneel before your throne, rather your love makes us want to.  Thank you that you're a God that loves your people, that wants to take care of your children, that wants to bless us.  Thank you for being the good God that you are.. Not the condemning one that so many people think they know.   Who is like you O Lord, worthy of all praise?  Thank you and I love you. 

Tuesday, May 1, 2012

Oh my aching heart...

  Yesterday and this morning had some rough moments with Nathan.  He had multiple breakdowns about school, and how hard it has been lately.  He was excited to tell me that he got to move up on the rainbow chart and didn't get any red or yellow lights, but he quickly followed with "I tired so so hard to be a good boy Mom, and it was really hard."  He looked exhausted, he was crying... my heart was breaking.  This morning he was up very early.   Nathan was awake when Dan got up for work at 3:45.  Dan sent him back to bed, but I heard him up around 5:40... I'm not sure if he fell back to sleep or not.  Had I known before I sent him off to school that he was awake when Dan was up, I would have sent him to bed instead.  I have a feeling he's going to have a rough day at school today.  I prayed for him twice, which seemed to help with the emotions, but he was still worried about the kids calling him a "bad boy" today.  He said that one of the boys refused to sit by him yesterday and said because Nathan was "bad."  I made sure to tell him over and over that he's not a bad boy, and I prayed for him again.  I also did some sensory therapy before he left.. Hopefully that will help.  I'm wondering if a weighted blanket at night would help him to sleep better.  The only issue is, his room gets so hot, especially in the summer, that I don't know if he'll be able to handle it.  
  And speaking of sleep, my sleep has been terrible lately.  I can't get comfortable at night because of this stupid TMJ crap.  To say I hate TMJ syndrome is an understatement!  My neck, jaw, and now shoulder are so sore by the time I get to bed that it's next to impossible to sleep comfortably.  I can't sleep on the side of my face without pain.  Sleeping on my back is rather uncomfortable as well.  I found myself praying that somehow God would provide us with a Sealy Posturepedic bed.  The ones where you can adjust the head to come up and the legs...  What some people would call an "old persons"  bed.  I laid on one of those during Christmas time and I nearly cried because I was so comfortable.  I probably would have charged one on my credit card if it wasn't for Dan being there.  I'm starting to feel desperate for a bed like that.. especially when I'm tossing and turning half of the night.  If I had money to blow, that bed would be in my bedroom.. and a 4 door car would be in my garage. :)  
  Anyway, please be praying for my sleep.. Having better sleep helps me to help Nathan more.  When I'm exhausted, I have a short fuse, and my emotions get the best of me.  Thankfully, that didn't happen until he left today.  As soon as he walked to the bus stop I started sobbing.  His broken little heart, how I wish I could heal it for him.  How I wish I could protect him from the lies.  Prayer seems to help, so I just keep doing that.  I feel horrible sending him to school sometimes, but keeping him home isn't going to help him face his fears and problems in the future.  Oh how I wish our damn appointment could have been weeks ago!  With it getting so close to the end of the year, he probably won't have an IEP plan in place until the start of next year.  UGH!!! Please keep Nathan in your prayer.  Ask God to protect Nathan's tender heart.  He's so sensitive.  Also ask God to speak into the kids that are around Nathan, and to give his teacher wisdom as to how to help Nathan until his IEP plan is in order.  Please pray that by some miracle my TMJ syndrome would be healed, and/or that we could get that bed I mentioned.  I prefer healing, but I'll take the bed too. :)  Also, Jovie has been going to bed late and waking up rather early.  Please be praying for her as well... I guess praying for ALL of our rest would work.  Pardon my discombobulation.. I'm utterly exhausted beyond belief.  
  Thank you all.