Sensory Processing Disorder

Sensory Processing Disorder is a real neurological disorder, yet still Soooo often misunderstood. It has a huge impact on Landen's well-being, daily functioning, AND MY FUNCTIONING!

Our Personal Story...

Landen, now 2.5 yrs old (he will be 3 in April)

I'm going to skip the beginning b/c he had lots of other issues to deal with including surgeries, Dr's appts, staying on his belly for about 7-8 weeks after birth, etc etc.

NOW...

• He has anxiety of what "might" happen in certain situations. ex: noises, touch, bark of a dog, a light may flicker, any loud or different voice)

• He will decide if he will interact with you by the sound of your voice. If it's a comfortable voice, he's ok with you. If he doesn't like the voice of a cartoon character on tv or if they are dressed a little different, he will cry for you to turn it off, cover his ears, or turn away from the tv)...or tantrum will begin!

• He fears outings (especially if it's dark outside) for the fear of the unpredictable noises, laughter, voices, the way someone dresses..i mean like crazy hair and stuff...
• He only eats limited food items...which is very frustrating. He is allergic to tons of stuff but he gags/ chokes/ throws up on everything else. He refuses to eat foods based on texture, color, the way it looks etc. His limited food items are mostly breads, chicken (pulled or cut in tiny tiny pieces) rice, fries, pizza) yep that's about it.

• He is scared of going out in the dark. He is scared of anything that moves towards him ex:  ant, spider, birds flying near him, trees swaying over his head. He will not even go in his playroom if it's dark outside and the blinds are not closed. THE BLINDS HAVE TO BE CLOSED and even then, he prefers you come with him. If you don't go with him, tantrum begins!

• He doesn't like tight clothing or tags on shirts, shorts, pants. He prefers to be naked but hey...I can't let him do that! He hates socks on his feet unless he has his braces and shoes on.

• Brushing his teeth..it's torture on both of us to brush his teeth. He gags and sometimes vomits..JOY! It literally takes me about 5 minutes to just do a couple of sweeps on top and bottom of his teeth. By then, I'm tired and ready for a nap!

• He hates Fireworks (loud)
• Hates Halloween (costumes and crazy people)
• Hates Santa (costume and he simply freaks Landen out)

• FOR FALLING ASLEEP TO BE ACCOMPLISHED...

         I have to lay down with him and wait until he is completely OUT.
         Even at that point, any movement may wake him. He still wakes up
         in the middle of the night and wants me in bed with him. He will toss
         and turn the rest of the evening, waking just to make sure I am still there,
         he will tap me and say "hey mommy" and go right back to bed. HE WILL
         awaken again and say the same thing over and over just to make sure I don't
         leave.


I am determined to help my son over come these issues that basically debilitate him from being in certain situations and learning and growing just like every other child his age... That's why we go to OT!

I have heard some whisperings out in public like "she should just whip that kid" "discipline goes a long way""my kid will NEVER act like that" "spoiled brat" "I'm never having kids when I get older" etc etc etc. These are NOT things I have heard them say about Landen or I would go "momma bear" on them and that "aint" pretty! It makes me sad to see other people talk and judge someone else's parenting styles b/c they may have no idea that that child has some sort of disability that makes them act like that. The child simply cannot help it. Now, don't get me wrong, some kids ARE just spoiled brats! =)


Some people may think that I am just "accommodating" to him which makes him look "spoiled" but the fact is...He has Sensory Processing Disorder!
Landen and I have become "home bodies" and we like it that way. I know what he can and cannot tolerate while out, I know the places we can and cannot go.
As long as Landen is happy and comfortable I AM HAPPY AND COMFORTABLE!

MY CHILD HAS SENSORY PROCESSING DISORDER and he is the LOVE of my life! =)   ( As well as my 2 other children...Lexi and Zach) Oh, and my husband too! =)

~Halloween Carnival at the Y~

Before I get to the Halloween Carnival, let me recap you on yesterday's visit to the GI Dr in Greenville. Landen LOVES "fwies"...(AKA French fries) but he HATES Dr's, nurses, exam rooms, scales, thermometers...anything in a Dr's office, he hates! He usually starts off saying "mommy no" then comes the screaming, trying to jump from my arms, clenching on with his nails DUG in my skin etc etc etc. But yesterday I bribed him. I told him that if he was a really good boy and didn't cry at all, I would take him to get some french fries. He did AWESOME. He started off with this pitiful face, frowning, and ALMOST started crying BUT I told him that we were leaving to get fries REALLY soon. After he let the nurse weigh him (a whopping 36.2 lbs) I clapped and said, "see, you did it." After that, he clapped at everything he did without crying. THANK YOU LORD!!! He kept telling the Dr that he was a "good boy" and "fwies".  After the Dr informed me that Landen is indeed overweight (95th percentile in weight) Landen informed him that he was going to get "fwies" over and over and over and over etc. Oh well! It's not like I can bribe him with an apple or smoothie... he gags on fruits and veggies.

What was the verdict?  Dr Markowitz really thinks that it is his shunt but is willing to try a strong acid blocker since his vomits are like opening up a fire hydrant! He will see us back in 8 weeks and if no change, we will then go back to Troup and schedule surgery to replace his valve on his shunt.

NOW FOR THE FUN STUFF! YEAH RIGHT!!!!!!!!!!!

The Halloween Carnival at the Y was not fun. We did however get to show off our "copied" wheelchair costume. Thanks again to my "blogger friend" who posted the "how to" directions on her blog for this costume! This worked out great for Landen who does not like costumes, no masks, no bulky outfits etc. As soon as we walked through the Y doors you could hear loud music, the gym was dark, and there were some freaky, scary masks in there. Landen freaked!!! He swung his wheelchair around, started crying and headed in the opposite direction! I knew what was coming! I grabbed him out of his "front loader" and ran to the bathroom...we almost made it! After that was over and I cleaned the floors, Landen, around the sink, myself...we went outside! That WAS NOT good enough! People were parking to come have fun at the Carnival and he saw MANY MANY masked boys, girls, and adults! Not a good idea!
Anyways, I did get a chance to get a couple of pictures but if you look closely, he is not happy, his face is red from screaming and he is putting on a fake smile! Bless his wittle heart! Needless to say, me and Landen went home but he WOULD NOT let me out of his sight, he wouldn't let me put him down, he wouldn't even let me leave to go to the bathroom unless he was right beside me, and of course he woke up in the middle of the night!

Dear Future Halloween Carnivals anywhere and everywhere...We WILL NOT be seeing you at any of your activities in the near future!! My idea of a fun night DOES NOT include cleaning up my sons vomit on your bathroom floors, nor does it include my skin being shredded from my sons finger nails dug in to my arms, nor waking up all hrs in the middle of night b/c he is scared of some masked boys or girls....(I need my beauty sleep). I appreciate the effort you put in to your Carnivals to make it fun and safe for children. FYI... IT WAS NOT FUN NOR SAFE FOR ME OR MY CHILD AND HE WAS TOTALLY NOT IMPRESSED!!!  I think this experience SEVERELY damaged my son from any future Halloween activities~

Now the big question.... Do we even attempt to go to our Church for the Fall Carnival Tomorrow? DUH.....Heck NOOOoooooooooooooooooo!

 OH SNAP...HERE COMES A BOY WITH A "JASON" MASK ON...CRAP!!!

 FAKING A SMILE BETWEEN THE TEARS...

 LET ME JUST GET OUT OF HERE PLEASE!!!!

 TOTALLY FREAKED OUT AND NOT HAPPY AT ALL!!!!!!!!!!!!!!!!!

Weekend fun!

Lets just say that I am getting old...er! My BEAUTIFUL daughter, Lexi, turned 17 this past Saturday~ It seems crazy for me to be saying that! Where did the time go? Next weekend I will be blogging about my son turning the BIG 13!!! His birthday is NEXT Saturday.

My kids don't like to have parties so they always get to decide what they want to do for their birthdays. For the past several years BOTH Lexi and Zach say they don't want to do anything other than go out to eat. WHAT? I tried to get Lexi to have a BIG 16th birthday party last year and NOPE she didn't want that. I tried to get her to have a party this year and NOPE she didn't want that. What did she want to do? Pedicure and eat at Steak N Shake. Ok...so that's what we did as well as went to the Peach Tree and picked pumpkins and ate some of their amazing ice cream. ( No pictures of Zach b/c he was too busy hunting for some deer at the hunting club)

Zach has already chosen what he wants to do next weekend...HUNT with pawpaw, go to CiCi's and go kick field goals at the school. Yep, those are my children. Nothing fancy, nothing expensive...except for their gifts! =)

Next year though... A CRUISE SOMEWHERE for their birthday's since they are a week apart and Lexi will be 18! Simple as that!! =)

Update on Little Landen... Still gaining weight, still throwing up, GI appt this week, new walker on loan b/c his other one is "too advanced" for him and he is not walking well, he has a nasty cold (WELCOME cooler weather...we will keep a cold until Spring..Happy Happy Joy Joy!!!) Still has MAJOR issues with food and I can't get him to eat meals...or anything other than doritos, terrible 2 tantrums still exist, not sleeping all night...STILL !!!!

Update on Home Study...  We are done! Thank goodness. Now, just praying that the right child for our family will come along SOON!!

Enjoy pictures from this weekend...minus Zachary..again, he was hunting! =(

Can't wait to post pictures of Landen's Halloween costume. We borrowed the idea from a "blog friend" that is super crafty, creative, and simply WONDERFUL! Thanks!!!

Invasive or Less Invasive?

LET'S GO WITH LESS INVASIVE!!

Tuesday was a VERY long day! We had a head CT/ shunt series in Greenville first. I HATE CT's! Usually Dr Troup orders them with sedation but this time he didn't. (Sorry  Radiology nurses... I warned you!!!) I told you from the start that he was going to throw up...twice.... you'd have to restart the CT 2 times and I'd end up laying on top of him and holding his head down! So...what happened? Threw up twice, restarted the CT twice and I ended up laying on top of him for the procedure! Good thing I know my son and took an extra pair of clothes. Left GMH, went to Troup's office. (neuro) CT looked great, shunt working and draining like it should! So what now? He throws up twice a day...power vomits. I buy new car seats like they are going out of style and I spend more money cleaning my carpets in the van than I'd like to.

Dr Troup suggested :  It could still be his shunt. He has a type of shunt that drains constantly and SLOW. It could be building up pressure and not draining quickly enough so he could go in and change the valve to a different type. (require surgery)

Admit Landen to the hospital..put in a "bolt with a pressure gage on top" and try to INDUCE vomit. This will tell him at what pressure he starts to throw up...adjust his shunt with the information he gathers from that. (require admission and surgery)

Refer him to a GI in Greenville (since Levine's GI Dr's aren't good either) and run tests to see if he is digesting his food "normally" (require more scans and throwing up and tantrums, more hatred for Dr's, and depending on the results....surgery)

Or... he's aspirating and that's what we will deal with the rest of his life....or he is having migraines which can cause him to throw up..he does tell me his head hurts and slaps the back of his head....At this point, I don't know what's going on but we CHOSE the LESS INVASIVE...GI appt in Greenville and go from there! (Apology in advance to the nurses and GI Doc we will be seeing soon! My son HATES Dr's and nurses of ALL kinds... no matter how funny you are and no matter what kind of sticker you offer him! Just saying!!!!)

A few picture updates...

Landen LOVES his backpack and thinks he is going to school...until I told him I couldn't go with him! He quickly changed his tune on the whole school thing! =)

Yesterday he said, "mom, walk, backpack, school, c'mon"  Which meant he wanted in his walker...with the backpack on, and I was going to school with him! He walked towards the door and said "c,mom mom!" I told him I couldn't go to school with him that schools don't allow mommies to come with them. He started to cry and said "me, home" =)