Sensory Seeking Chaos

I knew it was coming. It's been raining for several days on and off, highly limiting the amount of time Pook has been able to play outside. Playing outside is a MUST for him. He has a trampoline, a basketball goal, a bicycle and a dog......all of which provide great sensory input for him.

Add to the fact that the weather has prevented his outside play, we also have been living in the midst of a large swarm of very noisy Cicada's for three weeks. It sounds as if a house alarm is constantly going off. There have only been two times through the three weeks the Cicada's have not been playing their "song".....when it rains, and at night time. Of course, Pook isn't normally outside during those times anyway!

So, I've been waiting for him to melt...somehow, someway. Today was that day. I woke EARLY this morning to Pook's face directly in mine. He was talking very loudly and telling me to do something (I'm still not quite sure what). He was adamant, loud, and very pushy. He seemed to have completely forgotten any concept of personal space.

Our day was filled with him mouthing all kinds of objects that should not go in a mouth. He jumped around everywhere and climbed on everything in sight. He slammed doors over and over again and repeatedly returned to the kitchen for big metal spoons to bang on the counter tops. He banged on windows, walls, floors.....everything he could. He banged with sticks, toys, belts....all of it.

When I had to make a business call, he ended up screeching over and over again right next to me. May God bless the wonderful patient woman on the phone who was handling the call!! Despite my attempting to go to another room, my screeching son followed me, close to my heels.

His diet today has been awe inspiring. He has eaten at least 8 oranges (though I suspect much more), a bit of peanut butter with shredded cheddar cheese mixed in, Taco Bell Fire Sauce and Texas Pete Hot Sauce. The latter two he ate straight from the packs and bottle. Oh, and he also ate an apple juice popscicle.

He refused to shower, telling me that he was a Ninja and his Mommy told him he's not allowed to take showers at other people's homes. He also got into the fridge and jugged almost an entire 2 liter of his fathers caffeinated beverage. He refused to have anything to do with his bedroom.

Just watching Pook today exhausted me!!

Then, Daddy came home. I'd printed out an article for Daddy last night from Hartley's Life With 3 Boys. The article, "You Can't Always Get What You Want" by Alysia talked about the specific sensory play that her husband has with their son each morning to start the day. When hubby came home this evening, I handed him the printout, pointed to the first picture and said, "Let's try this". We explained to Pook what we wanted to do and was met with a crying and resolute "NO!". So, I sat down and showed him the picture of the father and son. Well, apparently if it's good enough for them, it's good enough for him! I laid on the bed, relaxing for the first time today, and watched as Daddy pulled Pook up into the air and Pook transformed his body into an "X". For the first time today, Pook smiled and from there his smiles turned into giggles and laughs. His intense gaze that he'd had all day begin to soften. Dad was able to get him into the shower shortly therafter and cuddled with him (while providing deep rubdowns) on the couch until he fell asleep.

I came to terms a long time ago that I couldn't give Pook quite the sensory input that his Daddy could give him. I'm OK with that, except when Daddy isn't here!

Don't get me wrong....sensory seeking days aren't all bad. Today we found a tick on the inside of Pooks thigh. Dreading having to remove it, I laid him down on the bed and got the tweezers ready. First pull....nothing. Second pull....nothing. After several times attempting to get the tick to disengage itself from Pook's thigh, it finally came loose. Pook didn't bat an eye. He just laid there and talked to his sister about various subjects. I'm sure we wouldn't have had the same response from him on a different day!!!

Raising a child with special needs is filled with exhausting days like today. Yet, I am blessed beyond belief to have Pook teaching me each day things I would have never even noticed without him.

What to title this one???

Since early childhood, I always said I wanted to grow up and have 12 children. After seeing the way children with special needs was treated, I often prayed and asked God to let me have the children with special needs, as I knew I'd love them just as much as a "typical" child. Yet, after three children I ended up having a hysterectomy and knew I'd never carry another child in my womb. Yet, I still longed for 12 children and knew my heart was open to children with special needs. 


When I married my husband, not only was he willing to accept my three children from a previous marriage as his own, he also liked the idea of adopting more. We've talked about adoption on and off. We thought that maybe we needed to wait till Pookie was older. We wondered if adopting would take us away from providing care and attention he needed. We discussed the impact it would have on our older children. Then, we watched "My Flesh and Blood". It's a 2003 documentary that is now showing on Netflix. 


Suddenly, we wondered what it is we are waiting for. Like the woman in the documentary, we can't provide the children with all the material things they would desire and maybe even a few things they might need. But, we could show them that they could be part of a family, loved, cherished....where no one would leave them. 


So, today, I started exploring adoption websites. Upon my first Google search, in the search results, this is what I read:


"Requirements for adopting a child with special needs tend to be less restrictive than requirements for adopting a healthy infant."


WHAT????????? Is this serious? I clicked through to the link and yep, sure enough....that's the truth. I knew that children with special needs weren't placed in homes as often as typical children. I knew that the older the children with special needs got, the less likely they were to be placed. I knew that many children with special needs growing up in the system end up institutionalized, not because they don't have the potential to do more independent, but because there just isn't anyone there to love, cherish, and support them. Yet, at what point in time did adoption agencies determine that it's OK to place a child with special needs in a home that a typical child wouldn't be able to be placed in??? 


I am the parent of a child with special needs. As a result, there is so much more that we need now then before. Support, access to specialists and medical care, networks with others that can relate, it goes on and on. 


I'm seriously interested in knowing exactly what restrictions are not in place for a home that is going to have a child with special needs placed in it versus a home that is having a typical child placed. 

New stages, new diagnosis, and more

I'm getting really bad at keeping up with updates. Blame it on buying a new house and moving.

Pook has gone through some significant changes recently. Some have been profound, both good and negative. First, Pookie is becoming aware of his own emotions. He's finally feeling emotions and being able to articulate them. However, the emotions seem to be coming from events that happened weeks before.

Pook also is becoming aware of the fact that sometimes he hits and kicks. It seems he has two levels of "meltdown"...one when he realizes in the moment that he is in the process of hitting/kicking/throwing/etc and another where he has no recollection at all. With the first one, he says that he doesn't want to hit/kick but that his body does it anyway. Although this highly frustrates and upsets him, I feel it's a tremendous achievement and will aide us in helping him achieve his full potential.

Pookie is also now aware of various ways that he differs from others. Unfortunately, he's having a very hard time accepting those differences on top of his overwhelming and seemingly sudden emotions. His response has been that he wants to die. I can't begin to express how scary it is to have a 5 year old tell you this. I am completely overwhelmed and out of my league on how to handle this. However, I am staying focused that his emotions and thoughts are the ones important right now and that God will carry him through this. We are also blessed that Pookie has a great team of specialists he works with.

All this brings us to the latest possibility regarding diagnosis. For those of you who know us or read the blog, you may know that Pook was diagnosed with Sensory Integration Dysfunction/Sensory Processing Disorder at a very young age. He is very sensitive to sounds, lights, etc. At the same time, there are many types of physical stimulation he craves constantly which explains his always climbing, jumping, spinning, and holding vibrating objects to his ears. He's also been diagnosed as having Obsessive Compulsive Disorder, however we are optimistic that this is directly related to his sensory issues and will not be a problem as his therapy progresses.

We previously felt that Asperger's would end up being Pook's "final" diagnosis. Yet the neurologist wants us to take Pook to see an audiologist that specializes in Central Audio Processing Disorder. I've done quite a bit of research and was surprised to find that between the Sensory Processing Disorder and the Audio Processing Disorder, all of Pook's symptoms are listed (except the OCD). Each of these disorders have very specific therapies outlined that will help Pook reach his full potential.

To read a full list of symtpoms of Sensory Integration Dysfunction/Sensory Processing Disorder, please go here:    Checklist of Symptoms

If you have a child aged 5 or older that has Autism Spectrum Disorder (ASD), Sensory Processing Disorder (SPD), or is typically developing and you would like to participate in an online research study, please click here: Cambridge Psychology  (You will be entered to win an Amazon gift card upon completion)

If you would like to read about the differences between Sensory Processing Disorder and Autism, please read here: Autism and SPD

If you would like to read more about Central Auditory Processing Disorder, you can find information at the following links:

http://www.ldonline.org/article/8056

http://www.nidcd.nih.gov/health/voice/auditory.asp

http://www.asha.org/public/hearing/disorders/understand-apd-child.htm

Please remember that it is very difficult for individuals who have "invisible" diabilities. Take the time to get to know someone before judging them. A child screaming and clawing at others in a store.......a woman in a wheelchair you saw walking perfectly fine the day before......a teen that bumps into everyone as she walks past never saying "excuse me"......a man who refuses to look at you when talking.

There are to many "invisible" disabilities to  list here. I am sure that at least one of you knows someone with an invisible disability, whether you know it or not. Don't judge others.....instead reach out to them.