Every mother that has a child with sensory issued understands the dilema with shoes. Shoes "feel weird", "hurt", and overall just don't want to be worn. We've learned to get very creative. One summer, Pookie wore golashes all summer long. They literally fell apart! One winter, he wore slippers. As an infant he wore moccasins.
Two weeks ago, a friend gave us some hand me down clothes. Pookie never wears "new" clothes because they are to rough for him. I'd have to wash them every day for two weeks to get them soft enough that he'd consider wearing them, and even then it's usually no. So, we live on second hand and hand me down clothing for him. With the clothes came a pair of new balance tennis shoes, barely worn, with shoelaces. Shoelaces have always been avoided due to his obsession with ropes and strings (we all still hide our shoes with laces). Pookie however loved that his "best friend" gave him these shoes and wants to wear them all the time. He insists that they make him "special" and they are "good cause N on the side".
HOWEVER, Pookie can not stand that the shoelaces never tie perfectly.
Step 1: Stretch out the laces and make sure the tips line up with each other. If not, relace the shoes until they do.
Step 2: When making the loops, they must be of equal size with each other. This can not be close, or almost, but PERFECT. You must try over and over and over again to make it just right. We often don't make it past this point and end up in full melt down mode.
Step 3: After getting the two loops on the shoe to match, you must then get the left over laces to be the same length. This is extremely difficult since if you pull one lace, it shortens the loop. This means the loops are no longer equal and we proceed to either Step 1 or 2 depending.
Step 4: Once the two loops and laces match on left shoe, repeat steps for right shoe.
Step 5: Now it's time to make sure left shoe and right shoe have loops and laces the same size.
EVERY time he wears these shoes, he has a complete meltdown and we run late. I've tried hiding them, but he insists he has to have his "N shoes". Today, after he calmed a bit from his meltdown I said, "I have an idea. Let's go to the store today and buy you some shoes like that without shoelaces". Translation: We'll pick up some athletic shoes that don't have laces. What Pookie translated it as: We'll go buy a pair of shoes that looks EXACTLY like these but that do not have shoelaces.
So, if any of you happen to see a pair of New Balance sneakers, gray black and orange, with no laces......how bout letting me know.
Saturday, July 23, 2011
Friday, July 22, 2011
OVERWHELMED in Holland
Today's blog is so intricately woven with multiple aspects of my life, that I'm going to post it on both Paths From My Soul and Paths From Pooks Soul. I'm pretty sure this blog rivals all my other to be the longest post yet.
I honestly don't know where to start. There is only one word to describe how I've been feeling lately...........
OVERWHELMED
I know that God is going to carry my family through this time as He has all others. My faith is not doubting. I just know that the journey through is hard and difficult.
It's hard to believe all that has happened in 2011. I decided to come off all my prescription medications and now only take Ibuprofen and use Lidoderm Patches. I take tons of vitamins and supplements. I feel that I have a much higher quality of life, though the pain can be enough for me to consider ways to render me unconscious at times. I refuse to take immune suppressants, steroids, narcotics, muscle relaxers, or any of the other junk most docs try to pump me full of. Stopping all meds has been an emotional time for me. I still have so many days where I feel like I'm going through withdrawl. I never thought the negative effects would last this long.
I've also started to have a significant worsening of my short term memory. I ask hubby each night to tell me what we did the day before, in an effort to jog my memory and keep the information where I can recall it. It does seem to help a bit, but the majority of my days are lost from memory. I write down everything I do in a calendar, in the hopes that I can recall it. Due to the memory lapses, I find that I often offend people I don't intend to. I have always been a person of my word, yet here lately it seems I find myself not following through on things I've said I would do. Not because I don't care and don't want to..........but because I don't remember. My memory loss has terrified me so much, that as soon as a thought pops into my head, I say it for fear of forgetting it. This comes across as so terribly rude and I don't know which is worse.......interrupting to get the thought out before it's loss forever into the abyss or taking notes every time I speak to someone (I do this with EVERY phone call, therapist and doctor visit, etc). Those closest to me have noticed the differences that have come over me in the last several months, but I think they are at as much of a loss as me.
My physical body is going through an upheaval. If this hadn't happened so many other times through the years, I'd think it was due to my stopping the prescriptions, but I know better. The pain has started to settle deep within my joints. My Reynaud's is attacking me even though it's hot weather instead of cold. The shooting stabbing pains in my head are coming with more frequency even as my vision issues have resolved themselves. The strength in my hands are almost completely gone and though I'm mentally clear enough to drive most of the time (I do still have days where I end up completely lost on a road I've traveled thousands of times in my life), the pain that results from driving is agonizing. I'm hoping a vehicle in better shape will not be as hard to handle (the frame on the truck is warped and it always pulls to one side while driving, plus transmission issues require changing the usual automatic gears by hand).
The housework is piling up and I can't stand looking at it. Keara is a champ at helping me around here, but I think she's completely overwhelmed and I regret that she seemingly has no childhood. Between her caring for her younger brother, caring for me, and helping me carry the burden of chores....there isn't much time left for her. Time for her to spend with me alone....that doesn't even happen anymore.
Yet, honestly.....the most stressful thing in my life right now isn't even my health or my ability to do all that needs to be done. You see, I went on and on above because I hesitate to really reach into the depths of my being and write the part that is tearing away at me piece by piece.
Most of my readers know that our 5 year old is Autistic. It's high functioning which is a blessing in that he can reach a much higher potential then many children with Autism. It sometimes makes it harder when dealing with other people because the vast majority of people assume that if you look "normal" then you should act "normal". I've witnessed this first hand myself. When I had to use my electric wheelchair, people treated me different. It drove me crazy at the time because there was so much I wanted to do for myself that others wouldn't let me. Other people's expectations for me altered because they saw me in a wheelchair. They had more compassion and were even willing to volunteer things like bringing us meals, helping clean the house, and babysitting in our home so I could get a break. Once I was able to walk around again, even though I still battled the exact same health issues and was still severely limited in my abilities, the expectations of others jumped right back up to the point prior to my ever getting sick. This is where Pookie is. People look at him and see a bright, active child. Therefore, they expect him to behave like a typical child. They don't know that the evaluations that we've recently gotten back say that he has "mild to moderate autism", "impaired vocabulary", visuospatial issues, processing delays, severe sensory integration issues and more! Worse yet, many don't seem to care even if they do know!! They don't look at Pookie and see how far he has come. They don't see how much he really does care of how after he hurts someone, he comes and tells me he wishes that he never hurt anyone. They don't know that he cries beside me saying he wishes he were dead because his body does things he doesn't want it to do (this is due to processing delays...he acts impulsively because his brain processes the information to slowly and only afterward does his brain process the alternate ways he should have dealt with a situation).
Don't get me wrong...........we have some really great, exceptional friends in our lives who are very supportive and understanding. They've made all the difference.
Yet now (finally, the meat of this post), I don't think any of us know what to do with the latest diagnosis. Not of Pookie, but of my eldest son. You see, Keeg has, up until recently, been the perfect and most exceptional child. I know you think I'm biased (and I am) but there was just so much about him that was unique. At 2 1/2 years old, he taught himself to read!! I was teaching him letters and sounds and he already was reading Doctor Seuss books. By the time he was in Kindergarten, he had already tackled his first Isaac Asimov novel (not an easy read for many adults even). He was super bright when it came to intellect and I watched him carry on conversations with his medical specialist that blew everyone in the room away. I can not tell you how many times someone told me that he was the smartest child they'd ever seen. I was PROUD. It seemed like no matter all the wrong I'd done, I'd been blessed with a child that was an enigma. Keeg always battled some pretty severe health issues, but his behavior was always above and beyond. He was the child you look at in the store and stop the mother just to say, "You have the best behaved child I've ever seen". He was the child you told once and once only. He was the child who always seemed to know who was upset and would ask what was wrong. He was the child who always did his schoolwork, always kept his room clean, and always ate his vegetables.
A year ago I started having issues with him. He was always reading. He'd read the tags in laundry, he'd read the labels on the cans in the pantry, he read and read and read. He could no longer complete tasks or chores because he stopped to read everything. I even caught him a few times reading the garbage in the kitchen can. He'd walk by and it would catch his attention so he'd stand over the can, peering in and reading. I would have to tell him over and over and over again to do something before he would complete it. He would tell me he didn't hear me, or didn't remember. I would ask him to complete a chore and hours later would be appalled that it wasn't done, even after he told me he completed it. He'd walk into the room, look around and dumbfounded ask me, "what else needs to be done?" I was at my wits end. How could the once perfect child suddenly be this rebellious, disobedient teenager?? I talked to friends with teens and they assured me that this was just part of growing up and eventually (albeit a long eventually) he'd outgrow his rebellious streak. How did I not see what was really happening?
About 4 months ago, Keeg and I were home alone. I told him that I was going to give him a chore and I was going to observe his completing it. Each time he stopped to read, I would redirect him. He was to try his best not to read, and if he read something and I didn't notice, he needed to tell me. About 3 minutes into this, he was crumpled on the floor, tears streaming down his face, his hands pulling at his hair, and saying, "I can't do this! I have to read! I have to! I have to!" I sat, completely blown away. The agony in his cries froze me. Something was wrong....terribly wrong....and I didn't know what it was.
I talked to several professionals I've become friends with through the years and heard lots of different ideas. I decided that the first step was to get him in with a professional therapist. Someone that would address the needs of our family and help Keeg deal with the stress he was going through. I got a referral from a friend and set up our first appointment. The doctor had me feel out a bunch of assessment forms online for Keeg so that he could review them before our appointment. When my husband and I went to meet the doctor, he handed me a scholarly article to read about Asperger's. Confused I looked at my husband. Why would he give me this when I'd already told him our youngest was diagnosed with High Functioning Autism and not Asperger's? The doctor let me know that the information wasn't for Pookie...........it was for Keegan.
The foundation of my world shook. Reality started to spin and meld. I sat in the midst of the chaos, frozen in a warp that wracked my awareness of all. This isn't what I was supposed to hear. I was supposed to be told that he was ADD with maybe some OCD. That's what I was prepared for. Asperger's??? NO NO NO....my youngest son is on the Autism spectrum....not my oldest! I pushed myself to read the article he had handed me, floored to find out that it addressed how it's actually COMMON for children with Asperger's to not be diagnosed until they are in their teens. I managed to make it through the appointment, and back out to the truck. My first words to my husband after we pulled away was, "How could I have missed this?"
I grew up with family members and friends that had special needs. I went to college for Early Childhood Education with a special interest in Special Needs. I've volunteered, helped out and fund raised for various organizations that help with Special Needs. I've spent the last 5plus years studying Autism Spectrum diagnosis, Asperger's included. And then the lighbulb went off............how many times did I pull Keegan over to me while researching and say, "Hey, this sounds like you!"
Looking back..........I missed so much. The way that Keegan never really cared much for affection. Yes, he'd let me hold him, hug him, and give him kisses as a child. But deep down I always felt that he was only tolerating it for my benefit. The way that his room always stayed so clean because he didn't really own much of anything. He would always ask me to give his toys to children that didn't have any. Proud as can be, we'd do so. It's only in hindsight I see that it was because he didn't care for the typical toys children played with. His room has always been minimal in decoration and toys. For as long as I can remember he's only wanted an alarm clock with radio, a lamp, his hotwheels and a chess set. Looking back, I can see how unusual this is for a 5 year old.....but at the time I just saw it as a sign to his immense intellect. Keegan has always been particular about his clothing. He has always preferred khaki pants and shorts after he went to a charter school that required school uniforms. He likes long socks with the tops pulled straight up his legs. Keegan never really had any sense of style, but being a single mom that didn't really have any other Dads to chat with, I just thought it was a guy thing. There were always gross motor skill delays and clumsiness...........he had really big feet and I chalked it up to that. I never noticed that Keeg didn't recognize personal space until he was older. When a small child sits down immediately next to someone, it's cute. It's not a red flag that he doesn't realize that people have personal space. Keeg has never known a stranger.....NEVER. It's not uncommon for his interactions with someone to start off with 20 questions. I just thought he was curious and trying to feed his intellect. When my husband and I married two years ago....Keeg had pretty much spent his life caring for me and his little sister (due to my own health issues). He'd been the man of the house. My new husband, his now step-dad, sat him down before our marriage and told Keeg that he was proud of him for all that he'd taken on through the years. He was proud of him for the way he took care of me and his sister. Now, he could just relax and be a kid! He could play and have fun. Once Keeg accepted this, play he did. My husband asked me then if I noticed Keeg's play. Did I notice that he played like a young child? Did I think there was something wrong? Did I notice that Keeg had gone from one end of the extreme (never playing) to the other end of the extreme (continuously playing)? Did I think it unusual that Keeg's imaginary play was immature yet intensely intelligent at the same time? Nope.........I didn't think there was a problem. He'd spent years taking care of me and his sister and now was just letting out all those years of pent up play. Besides, he was altering his play to match that of Pookie to help keep Pookie entertained. He just continued the same games when Pookie was otherwise entertained, right?
I could go on and on. You see, I've had 3 weeks and 2 days since the first doc told me he thought Keeg had Asperger's. Since then we've met with a pediatric neurologist who has all but confirmed the original therapist ideal. He's scheduled the appointments necessary to get the "official" diagnosis. Keeg was admitted into the hospital for unrelated tests, and numerous nurses and therapist he came in contact with assumed he'd been diagnosed with Asperger's long ago. (My mind screamed REALLY? REALLY? REALLY? the entire time). A child life specialist told me that her brother has CP and mild mental retardation and that Keeg reminds her so much of him. She said their mannerisms are identical. She said this with the sweetest affection for Keeg and her brother that I was deeply moved, yet inside I could feel the vibrations resonating through my body as my brain screamed "WHAT? MY SON? HOW DID I MISS THIS?"
Thursday, Pookie went for another evaluation with a speech therapist. I had to meet with the OT there so when Pook didn't want to go back with the therapist alone, I sent Keeg with him. When it was time for me to meet with the therapist, she wanted to make sure I'd realized that Keeg had special needs as well. Again, my mind screamed "DID EVERYONE SEE THIS BUT ME?"
There are always times in a parents life that you feel like a failure. That there were things you missed, things you should have done differently, things you should not have done at all. Yet, I can honestly say that nowhere in my 14 years of parenting have I felt so totally off the mark. My son has lived with me for 14 years....his entire life....and despite all my knowledge and training, I missed that he has Asperger's. I don't care that it is COMMON for children to miss diagnosis till teen years...........THIS IS MY SON. My firstborn. It makes a difference somehow.
Each day I make so many mistakes. I am trying so hard to change my perspective, to see Keeg as who he is and not what I always dreamed he would be. I'm trying so hard to realize that I'm in Holland and that Holland has so many things to offer (click on the blue word Holland if you don't know what I mean). I have to stop myself and apologize a thousand times each day because I realize I reacted to him without realizing his actions weren't intentional, that he didn't understand, and that he was doing exactly what I said just as literal as I said it.
I try not to think about his future right now. Don't get me wrong.......I'm doing everything I need to so that he gets the best of everything and reaches his full potential. I know that he can still be and do anything he wants to and that Asperger's is not a limit on this. Yet, since before he was born I'd dreamed of his future. When he was 2 he told me he wanted to be a doctor and didnt' sway from this except for when, at age 4, he decided to be a missionary. He talked of working at NASA so that he would have the means to reach the goal of missionary doctor. Those dreams haven't changed...........but the paths to get there are forever altered. It's not a bad thing......... but change is always hard for us adults. Selfish as it is, my life was always so chaotic there were only a few constants I felt I could depend on and those were God and my children. That hasn't changed.....but for me to be the mother Keeg needs, I have to change my entire perspective and outlook. I have to let go of my dreams to visit Paris and find the beauty of Holland. Ironically enough, when I read "Welcome To Holland" the first time I didn't really understand the full impact of it. I'd known since I was pregnant with Pookie that something "wasn't quite right" and the moment he was born it was obvious he had some type of special needs. I read "Welcome to Holland" shortly after Keeg's initial diagnosis and suddenly it all made sense.
I know that through all these things God will make sure our needs are met and dreams fulfilled. This is going to be a beautiful and joy filled journey. Yet, we all must mourn the things in life we have lost..............even when the door God has opened for us is so much more beautiful, amazing and breathtaking.
Thursday, June 30, 2011
"Official Diagnosis" and older child on the spectrum???
Pookie "officially" received his diagnosis Wednesday, June 22nd at aprx. 2:15pm. Although the doctor felt he was close to being diagnosed as having Pervasive Developmental Disorder with SO..........she said that due to a few "oddball" characteristics, he was getting a diagnosis of High Functioning Autism instead.
Am I surprised? No. Is it still a blow to me? Yes.
I'm not really sure why this hit me hard at all. Since Pook was a year and a half old, I suspected that he would end up with a diagnosis on the Autism spectrum. Although I went back and forth with specialists along the way suggesting High Functioning Autism, PDD, or Asperger's, we all knew he was somewhere on the spectrum. I've pushed for him to get the early intervention he needed with therapies and geared them towards Autism as I found these therapies helped him reach his potential. High Functioning Autism isn't a new concept for me regarding Pookie. I've realized a diagnosis on the spectrum was coming for the last 3 1/2 years. Yet, after hearing the "official" diagnosis, it was as if something inside of me fell flat.
I've discovered that throughout the years, secretly inside, in a place hidden from even myself, I was hoping. I was hoping that maybe the problem was my parenting skills. Maybe, somehow, I'd gone wrong with the third child. Maybe it was because I had health issues that limited me the first years of his life and his "oddities" was a direct result of this. I hoped that when others said, "He's just spoiled" or "You let him get away with to much"........part of me actually hoped this was true. If it was me, then that could be easily changed and dealt with. If I was responsible, then his future was simpler.
It wasn't me though. I'm not saying my parenting is perfect or that I've "succeeded" as a parent. Merely that my son's wonderful oddities aren't "my fault". With that realization, the landscape of his, and my, future has changed. It's not a bad thing. Just different.
As I spent the last week thinking about Pook's official diagnosis and exactly what that means for us, I was given another tentative diagnosis for my soon to be 14 year old son. I went into the appointment expecting to hear that my eldest was possibly ADD or maybe that he was OCD. Yet, when the counselor suggested Aspergers, everything in my world froze. My brain sputtered and gasped for understanding. HOW?? He's almost 14 years old........how could I not have noticed he was on the spectrum? How could I have spent the last 3 and a 1/2 years researching Autism spectrum disorders and not have noticed? How many times did I draw my husband over while researching and say, "He, doesn't this sound like Keeg?" How could I have not made the connection?
ASPERGERS......with this suggested diagnosis, the landscape of the future didn't change. Instead, the future moved to a far distant planet I never considered before. This just doesn't fit. Keegan taught himself to read by age 2 and 1/2. While I was teaching him letters and sounds, he was already reading Dr. Suess books and just didn't reveal it to me. By the time he was in elementary school he was reading high school level books. He breezed through math and grasped science concepts beyond his years. He learned how to play chess after sitting through one single game and spent the rest of the night beating adults that had been playing for years. He started working in college textbooks just this past year, at the age of 13. How how how could this be?
Yet, the more the counselor talked to me and explained characteristics and signs of Asperger's, the more ti all seemed to fit. The lack of concept of personal space and how more often then not you have to remind Keeg to "back up" when he's talking to you. How he never seems to notice that a conversation has, or should have, ended. How he misses social cues, facial expressions, and has never been embarrassed, even when it seemed he should have been.
So, while scheduling Pook's evaluations for increased therapy services, I am now also scheduling evaluations for Keeg to determine if he, in fact, does have Aspergers. Even though I can see the signs, and see the possibility, I know that deep down inside, in a place hidden even to myself, I'll continue to hope that it's just me. That maybe I haven't parented correctly and the oddities that Keeg is exhibiting are in fact a symptom of my poor parenting.
Until the "official" diagnosis comes...............
Wednesday, May 18, 2011
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.
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.
Tuesday, May 17, 2011
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.
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.
Wednesday, May 11, 2011
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.
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.
Monday, March 14, 2011
2012 Olympics = Segregation??
Everyone loves the Olympics, right?? Everyone, regardless where you are from, has at least heard of the Olympics, right? And now, each of us need to stand up and do what is right regarding the Olympics. The Olympics in 2012 will be held in London. As a result, lawmakers are attempting to pass new laws in an attempt to give a false image of the area. For example, some of the laws state:
"No person shall lie down or sleep in or on any public place."
"No person shall distribute any free refreshment in or on any public place."
"No person shall knowingly permit any person to distribute any free refreshment in or on any public place."
The legislatures responsible for these laws are passing them under the pretenses of helping the homeless. At this point in time, homeless people in the area benefit from "soup runs" where they have much needed nourishment provided to them for free. The concept is, if you stop providing much needed nourishment to homeless people in one area, they'll all leave and move to another area. (segregation???) I mean seriously, who wants to see a bunch of homeless people laying around when you're there to watch the Olympics?
Yet, lets look at everyone this affects. Let's say you are walking down the street in the area where this is to be banned. You see a single mother with three children. She looks tired and worn, yet still manages to smile when she speaks to others and her children. You can tell that she hasn't much money and you decide to go get each of the children an ice cream cone and give it to them. Oh, but wait.....you can't do that. The laws clearly state:
“refreshments” includes food or drink"
"refreshments are “free” if they are distributed without charge to the persons to whom they are distributed."
Maybe a nice gentleman holds the door for you and then has a seat nearby. You decide to give him a cup of coffee.....but wait, can't do that either.
Maybe you, like me, have health problems. Walking puts you in pain, sometimes so much pain that you need to lie down a few moments before proceeding. You find a bench that is empty, and proceed to stretch out, getting a few minutes of relief from the pain throbbing in your back. Oh wait....you can't do that either, it's illegal!!!
How about you men? Here you are, and your wife is shopping. We all know how long some women can take shopping!! You sit down, stretch out your legs, pull your hat down over your eyes, and decide to nap until she finishes. Ohhhhh....you can't do that either!!! It's illegal!!
Let's put yourself in someone else's shoes now. You've worked hard your entire life. You have always been self sufficient and paid for everything yourself. You never got anything on credit, likeing the feeling you got when making your purchases in cash. You had a secure, happy, confident life. Then your company went under. Through no fault of your own, you ended up unemployed in an economy that has no jobs available. You did fine until your savings ran out. Then you started to sell your belongings. When all was gone, you had no choice but to sleep on the streets. Your friends were all from the same company and ended up in similar circumstances. Though some had family to move in with and help, others were like you.....with no family nearby. The first night you ended up with nowhere to sleep, you walked for hours in disbelief. How did you end up here? What were you going to do? Sleep finally overcame you after the 2nd night you walked for hours. You sat down in an alcove to be protected from the rain. You only planned to stop a few minutes and rest, but sleep overcame you and you fell asleep. Just a few hours and you could be back up and on your way.....looking for work.....looking for ways just to survive......trying to figure out how to feed your stomach that rumbled and hurt with hunger. But wait.......you can stop and rest here, it's illegal. And the people who used to come and reach out to the homeless by offering them a meal are no longer allowed to. You'll remain hungry. Chances are you'll get fined before someone comes to let you know where you can go for food..........if you can walk that far as hungry and weak as you are. You see, homeless people aren't allowed in this part of town. They've been segregated to other places. Homeless people can't get help here...........the Olympics are coming and we don't want people to see the likes of you.
The Olympics are coming to London. Tons of people and businesses will flood the area, bringing in money and resources to the area. How easy it would be for the legislatures to use the Olympics to heighten awareness of homelessness. How easy it would be for the legislatures to use this as an opportunity to encourage others to reach out to help the homeless. Yet, instead, Westminster wants to run all the homeless people out and pretend that there are no homeless in Westminster.
Yet, you know the truth now. When you purchase that Tshirt that says "Olympics 2012" on it, will you think about the homeless that are being run out? Will you think about how if you were there, you couldn't offer a hungry man a meal....or children of lesser means ice cream? When you pick up that "Olympic 2012" ball cap, will you think about how ludicrous it is that a man waiting on his husband to finish shopping will be fined if he naps while waiting?
What if it were you? Show your compassion. Speak your thoughts on the matter b:
Print and fill out the consultation letter at the link below and mail it to: Alastiar Reeves: Rough Sleeping Team, Westminster City Council, Westminster City Hall, 64 Victoria Street, London SW1E 6PQ
OR
You can send an email to Alastiar Reeves stating that you disagree and why at areeves1@westminster.gov.uk
OR
You can call and voice your opinion by phone at 020 7641 2254
Link to letter to print and mail:
http://www3.westminster.gov.uk/docstores/publications_store/Draft%20Rough%20Sleeping%20and%20Soup%20Run%20Byelaw_Consultation%20Letter.pdf
Link to the Law:
http://www3.westminster.gov.uk/docstores/publications_store/Draft%20Rough%20Sleeping%20and%20Soup%20Run%20Byelaw.pdf
I please with each of you, contact regarding this matter. People can make a difference. Don't tell me that it doesn't affect you because you live elsewhere. This happens everywhere, every day!! It happens here in America. Just ask anyone whose been homeless......ask me!! Christ came here to let us know it's not our place to judge......it's our place to love.
"No person shall lie down or sleep in or on any public place."
"No person shall distribute any free refreshment in or on any public place."
"No person shall knowingly permit any person to distribute any free refreshment in or on any public place."
The legislatures responsible for these laws are passing them under the pretenses of helping the homeless. At this point in time, homeless people in the area benefit from "soup runs" where they have much needed nourishment provided to them for free. The concept is, if you stop providing much needed nourishment to homeless people in one area, they'll all leave and move to another area. (segregation???) I mean seriously, who wants to see a bunch of homeless people laying around when you're there to watch the Olympics?
Yet, lets look at everyone this affects. Let's say you are walking down the street in the area where this is to be banned. You see a single mother with three children. She looks tired and worn, yet still manages to smile when she speaks to others and her children. You can tell that she hasn't much money and you decide to go get each of the children an ice cream cone and give it to them. Oh, but wait.....you can't do that. The laws clearly state:
“refreshments” includes food or drink"
"refreshments are “free” if they are distributed without charge to the persons to whom they are distributed."
Maybe a nice gentleman holds the door for you and then has a seat nearby. You decide to give him a cup of coffee.....but wait, can't do that either.
Maybe you, like me, have health problems. Walking puts you in pain, sometimes so much pain that you need to lie down a few moments before proceeding. You find a bench that is empty, and proceed to stretch out, getting a few minutes of relief from the pain throbbing in your back. Oh wait....you can't do that either, it's illegal!!!
How about you men? Here you are, and your wife is shopping. We all know how long some women can take shopping!! You sit down, stretch out your legs, pull your hat down over your eyes, and decide to nap until she finishes. Ohhhhh....you can't do that either!!! It's illegal!!
Let's put yourself in someone else's shoes now. You've worked hard your entire life. You have always been self sufficient and paid for everything yourself. You never got anything on credit, likeing the feeling you got when making your purchases in cash. You had a secure, happy, confident life. Then your company went under. Through no fault of your own, you ended up unemployed in an economy that has no jobs available. You did fine until your savings ran out. Then you started to sell your belongings. When all was gone, you had no choice but to sleep on the streets. Your friends were all from the same company and ended up in similar circumstances. Though some had family to move in with and help, others were like you.....with no family nearby. The first night you ended up with nowhere to sleep, you walked for hours in disbelief. How did you end up here? What were you going to do? Sleep finally overcame you after the 2nd night you walked for hours. You sat down in an alcove to be protected from the rain. You only planned to stop a few minutes and rest, but sleep overcame you and you fell asleep. Just a few hours and you could be back up and on your way.....looking for work.....looking for ways just to survive......trying to figure out how to feed your stomach that rumbled and hurt with hunger. But wait.......you can stop and rest here, it's illegal. And the people who used to come and reach out to the homeless by offering them a meal are no longer allowed to. You'll remain hungry. Chances are you'll get fined before someone comes to let you know where you can go for food..........if you can walk that far as hungry and weak as you are. You see, homeless people aren't allowed in this part of town. They've been segregated to other places. Homeless people can't get help here...........the Olympics are coming and we don't want people to see the likes of you.
The Olympics are coming to London. Tons of people and businesses will flood the area, bringing in money and resources to the area. How easy it would be for the legislatures to use the Olympics to heighten awareness of homelessness. How easy it would be for the legislatures to use this as an opportunity to encourage others to reach out to help the homeless. Yet, instead, Westminster wants to run all the homeless people out and pretend that there are no homeless in Westminster.
Yet, you know the truth now. When you purchase that Tshirt that says "Olympics 2012" on it, will you think about the homeless that are being run out? Will you think about how if you were there, you couldn't offer a hungry man a meal....or children of lesser means ice cream? When you pick up that "Olympic 2012" ball cap, will you think about how ludicrous it is that a man waiting on his husband to finish shopping will be fined if he naps while waiting?
What if it were you? Show your compassion. Speak your thoughts on the matter b:
Print and fill out the consultation letter at the link below and mail it to: Alastiar Reeves: Rough Sleeping Team, Westminster City Council, Westminster City Hall, 64 Victoria Street, London SW1E 6PQ
OR
You can send an email to Alastiar Reeves stating that you disagree and why at areeves1@westminster.gov.uk
OR
You can call and voice your opinion by phone at 020 7641 2254
Link to letter to print and mail:
http://www3.westminster.gov.uk/docstores/publications_store/Draft%20Rough%20Sleeping%20and%20Soup%20Run%20Byelaw_Consultation%20Letter.pdf
Link to the Law:
http://www3.westminster.gov.uk/docstores/publications_store/Draft%20Rough%20Sleeping%20and%20Soup%20Run%20Byelaw.pdf
I please with each of you, contact regarding this matter. People can make a difference. Don't tell me that it doesn't affect you because you live elsewhere. This happens everywhere, every day!! It happens here in America. Just ask anyone whose been homeless......ask me!! Christ came here to let us know it's not our place to judge......it's our place to love.
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