"I don't want a red one. I don't want a red one. I don't want a red one." (referring to a Hershey kiss wrapped in red)
"Why do you not want a red one?"
"Cause red is for girls."
You see, several weeks ago Pookie heard someone say that the color pink is for girls. So, suddenly all colors must either be feminine or masculine character. The only color not thus defined is his favorite colors, white and blue. So, today, I got creative. I found this picture online:
I then asked him......"What's this?"
"A football guy!!" (He adores any type of ball and loves sports)
"What color is he wearing?"
"Red?" (he seemed very very confused)
"So, red is??? Is it a girl color?"
He started shaking his head yes but after about 45 seconds started shaking his head no. He still seemed confused but after several seconds his face lit up, he looked at me, smiled and gave me a big hug.
Here lately it seems I’m behind on everything and blogging gets pushed to the last of my priorities. Yet, my ideas for blogs never leave my mind and throughout the day I have a thousand different things I want to put to paper.
Life with Pookie has been increasingly chaotic lately. It seems each day we discover something that he can no longer tolerate, something he no longer can say, or something he no longer understands. It’s near impossible to figure out where to go from here. The majority of our daily interactions seem to be us trying to figure out what it is he needs. More and more each day we can’t understand his speech. In addition, he takes everything that is said very literal. Then, there is the fact that he can no longer understand certain concepts he previously grasped. I feel like I spend more time trying to figure out what he’s saying and how to say what I need him to hear, then anything else.
His visit with his pediatric neurologist recently went well. Although I didn’t really get any answers, we did get scheduled for more intensive testing. The first step is an EEG with sedation scheduled for the 9th of this month. Although the neurologist would have preferred to do a sleep deprived EEG, with Pookie's sleep disorder we weren't sure that he'd be able to fall asleep for the EEG itself. So, he'll be sedated instead. While he’s sedated, they will draw blood and test for various factors as well. The EEG will determine if he’s having seizure activity that is resulting in the various losses he’s experiencing. The other tests will look for various things such as vitamin deficiencies and whether other parts of his body are working properly. We’re also scheduled to take him to see a pediatric neuropsychiatrist. She will do intensive testing and develop very specific treatments to aide him. Of course, she’s one of the few in her field in this state and our appointment couldn’t be scheduled until April. We waited 6 months to get in to see the neurologist and now have to wait another 6 to see the pediatric neuropsychiatrist.
Life isn’t bad though. I’m blessed to have such a loving child. He’s full of energy and fun. We’re blessed to have such wonderful support from various resources. Our church family is fabulous in understanding and being non-judgmental. There are some wonderful child care workers that care for Pook when we attend church which is a wonderful break for us and a very important social activity for him. Not to mention it’s much easier to grasp a message when you don’t have a squirming, rocking 4 year old on your lap.
Our older two children attend Sibshops. Our local Sibshops recently received a grant from Speedway Children’s Charities. As a result, those who attend Sibshops and their family were invited to the awards ceremony which took place opening night at Carolina Christmas. Speedway Children’s Charities donated to more then 75 local charities that night. All the families associated with those various charities were allowed to participate in the various activities for free!
Our night was unbelievable! Pookie wasn’t real happy to be around so many people he didn’t know at first and spent the first hour clinging to me. The fireworks was not something he wanted and he firmly expressed his desire to go home. I held out though and with his siblings help was able to eventually convince him to go look at the many Christmas trees that were on display. That led to his going to the elves workshop where Lowe’s had generously donated
various building activities for the children. Armed with nails and a hammer, he and his father built a wooden garage for him to house his blue Hotwheels in!
Pook’s older sister appeared and showed him a picture of her and Santa. Completely bewildered and confused, he followed us to see Santa. His concept of pretend and real almost short circuited him then and there on the spot. But, Santa was holding up this Lugnut stuffy
that had blue and white (his favorite colors) on it and a candy cane to boot. He dragged me up with him, told Santa he wanted a bike that says “vroom vroom” and made it absolutely clear that there was no way Santa was going to touch him AT ALL. His picture shows him standing a foot away with Mom by his side!
Next we headed outside. There were tons of kiddie rides. His Dad and I took turns wandering through the rides with him. We should have known that Pook’s insistence on everything being completed fully and all things being where they go meant that he would have to ride every single ride there, but that didn’t really click with us until we were so exhausted our legs could barely move. Pook didn’t seem to have a favorite until we only had 3 rides left to go. He then entered this large inflatable obstacle course that had a huge slide at the end of it. He discovered that if he went out the back of it, he could run around, slip in behind the man attending the ride, and go back through it over and over again……….all while his parents frantically tried to find him in the huge inflatable. It took a lot of convincing to get him to move on. Once we reminded him that there were rides he had not ridden yet, he moved on.
After the rides and the petting zoo, we went to find our older two children who were at the ice skating rink with friends. The rink required at least one parent to skate with all children under a certain age so I sat down and laced up some skates. I was worried about how I’d manage with my own health issues if any of the children got hurt. I was especially worried about Pook. Yet, the Evel Knievel in him saved the day. Pook got on the ice, smiled real big and said, “Hey, watch this” despite my repeating, “Wait on Mommy!” Pook took off across the ice like he’d spent his entire life on it! Who’d have thought? After we skated for a while (with me holding on to the wall most of the time), Pook wanted to race. Three quarters of the way across the rink he looks back over his shoulder, saw me close to him, kicked up on the front of his skates and RAN across the ice!! I spent the rest of the night assuring everyone that it really was his first time on the ice despite their thinking he’d been skating for years.
We finished off the day getting a horse drawn carriage ride (a blue and white carriage…Pook’s favorite colors) around the racetrack to see the lights. Although we weren’t overly impressed with the lights, we were extremely impressed with getting to ride a horse drawn carriage around the Charlotte Motor Speedway racetrack! I never realized the incline those race cars sped across!
Pook had such a wonderful time. Granted, he was out of sorts for a few days after but now anytime he sees something that reminds him of Carolina Christmas, he asks to go ice skating. Pook longs to be a fireman and loves to ice skate. Yep, that’s an odd combination but one that makes him uniquely Pookie!!
I can’t imagine what our lives would be without all the support, love, and fun that Sibshops has brought into our lives. If your child has a sibling with special needs, you MUST get them into your local Sibshops program. I can’t stress how important it is for your children to have their own support group for living with a sib with special needs. It has totally changed, not only our children, but our entire family’s perspective.
Pookie has brought so much into our lives. We are better people then we were before he came. Pook has taught us a compassion that I don’t think any of us truly had before. I can only relate it to the compassion that moved Jesus when he saw the crowds of hurting people. I look forward to all the things that Pook will continue to teach us and thank God for the blessing He has brought into our lives!
(Personal note: Sibshops is a support group for children (Sibs) who have a sibling with special needs. It is a huge support to children and teaches the children on various levels including advocacy. Feel free to email me for more information)
Dear friend of Sibshops and the Sibling Support Project—
If you’re like me, you will start thinking about gifts for loved ones in the next few days. And, like me, you may prefer shopping online instead of heading out the mall.
If you are one of the millions who shop at Amazon, I have a favor to ask: Will you support the work of the Sibling Support Project by beginning your shopping by “entering” Amazon through the Sibling Support Project’s “Astore”?
You will get the samegreat deals you always get at Amazon,and Amazon will donate up to 6.5% of the purchase price to the Sibling Support Project!
Once you add something to your shopping cart from one of the below featured categories and proceed to checkout, you can then wander anywhere on Amazon. (And, if needed, you can yank any item out of your shopping cart prior to purchase.) Any eventual purchase made within 24 hours of entering the Astore will benefit the Sibling Support Project.
• Books about sibs and families
• Books and materials for Sibshop providers
• Woodbine House's Top 25 Books
• Any book on Amazon
• All music on Amazon
• Toys & Games
• Apparel & Accessories
• Camera & Photo
• Computer & Video Games
• Electronics
• Gourmet Food
• Jewelry & Watches
• Home & Garden
• Kitchen & Housewares
• Magazine Subscriptions
• MP3 Downloads
• Software
• Sports & Outdoors
• Tools & Hardware
Sooooo, over the last several months, we've worked with Pook on being able to stay with "new" babysitters. These were all people he knew well and whose home we've been to several times. We started by having him stay with one of his siblings with him for a few hours. Then, we eased him into staying a few hours without his siblings. Next, he stayed with his siblings overnight. Then......last night....for the first time EVER.....Pook stayed the night without either of his siblings with him! Not only that, but the "babysitter" just called and told me he's been incredible the entire time. No problems whatsoever! He was so good in fact, that she took him to pick out his very own surprise!
This may not sound like that big of a deal to some parents, but it is a HUGE MONUMENTAL SUCCESS for Pook! It shows us to never rely solely on what "statistics" or "specialists" say regarding children because in God all things are possible!
Pook, Mommy and Daddy and Bubba and Sissy are soooooooo very very proud of you!! We love you!!!
Thank you God for molding our son into the child that you will him to be!
Every so often, Pook goes through a sudden change. He'll wake one morning and everything will be different. This go round, the new changes started making themselves noticeable a few months ago. Life has been a roller coaster since then.
One of Pook's changes concerns food. He doesn't seem to care for anything he liked before and once again getting him to eat is a challenge. His obsessions have been added to and now include balls as well as the pressing need to explore each and every room in any new building (store, bank, home, whatever) we go to. He has developed a colorful vocabulary with the words flying from his mouth regardless of circumstances (thanks to all those in public places with foul mouths). The child who has wanted to stay naked every minute of his day now requires that he have on pants at all times. His ability to transition has gotten worse, something I didn't think was possible. Naps are unheard of these days although he stays exhausted. It's taking longer for him to fall asleep, even though he's so exhausted he can barely move. Although previously he knew not to take other people's food or drink, now he does so without any thought.
At the same time, he's suddenly acquired the ability to recognize some letters. He has also been able to memorize several songs and not only can he sing them, he can hum them and play the beat on various items. He can suddenly understand the concept of adding and somewhat of subtraction as well. He can now play educational games on the computer and use a LeapPad. He can trace letters and draw a circle. All of these things came on as suddenly as the things mentioned above. One day he couldn't, next day he could. He can now differentiate between negative and positive emotions. If upset, they all fall under sad. If in a good mood, it all falls under happy. When he gets his mind set on something, there is absolutely no distracting him now. Before, we could occasionally divert his attention but now the result of attempting to will always result in a catastrophe.
Many of the usual things still exist. None of his previous obsessions, such as ropes or ice, has disappeared. They've merely been added to. He still prefers super soft clothing and seams must be barely noticeable or else turned inside out. He still hates shoes and car seats. Pook doesn't prefer traditional toys but prefers to play with things most children couldn't care less about. His speech still comes and goes. Some days most people understand him whereas other days he is devoid of words and relies on sign language, pointing, and grunts. He still can't differentiate between hot and cold and getting his bath water just right is a difficult task.
So, are things better or worse now? Neither. I learned a long time ago that with Pook there is no better or worse, there is only different. Different, to my knowledge, has never been a bad thing. Pook requires the majority of our time. Most days it seems the world revolves around him. The older children feel neglected at times or get jealous but quite frankly, so do I and my husband. Yet, having Pook in our life continues to teach us so very much. Life each day is full of little lessons we'd otherwise never have. We're blessed that God has allowed us to care for him and wouldn't trade Pook for anything in the world!
On a side note, I've been looking at all the apps for the iPad that are available to help children on the autistic spectrum. I am simply blown away. Pook did fabulous with the DynaVox Mighty Mo we were loaned, but when the loan was over we couldn't afford to purchase it. The iPad offers many of the same things and a slew of other things as well. At around $499, it is definably more affordable. I've spent today reading reports from other parents regarding their child using the iPad. These children ranged from high functioning to severely autistic. All the parents and also educators across the board had fabulous things to say about the results. One parent was even able to use the social story app to get her son to quit grabbing other people's food! An iPad is nowhere in our budget now, but with it's invention a whole new world of opportunity is open to Pook.
I invite you all to look at my various links to the different apps available for the iPad (and some for the iPhone) at my pearltree located here: http://pear.ly/yWW1
A few weeks back I received a request to write about the effectSibshopshas had on our family. As most of my regular readers, friends and family know, I'm a huge fan ofSibshops. Below is a copy of an article aboutSibshops. It contains what I wrote about the program. I encourage every family that has a special needs child to check out the information aboutSibshopsby clicking on any of the blue links in this paragraph. The article below appears here:
The funding The Arc of Cabarrus received for 2010 from Speedway Children’s Charities was used to advance Sibshops, a support program for children in 3rd through 8th grades who have a sibling with special needs. Kids who attend Sibshops have an opportunity to interact with other kids who have brother or sister with a disability in fun and unique team building activities.
We receive many thanks and compliments from the parents and sibs who attend Sibshops, and we’ve asked one of our parents to share with you their success story and how Sibshops has impacted the lives of two of her children who attend:
“I realized while pregnant with my third child that something wasn’t quite the way it should be with my unborn son. He wasn’t diagnosed until 16 months old, but it was a diagnosis that brought a wave of relief. I finally knew. Those first 16 months were so hard. He always cried and screamed. Everything seemed to cause him pain, but I couldn’t help him. There were many times I walked over to my Mom’s and knocked on her door. When she answered, I would hold him out to her with tears streaming down my face.
My older two kids were struggling also. They had become stressed and withdrawn. They would tell me that they felt like I never had time for them. They loved their brother and were a huge help, but they were so tired. It seemed there was always so much extra work that needed to be done. In addition to extra chores, our social life had all but disappeared. We couldn’t go shopping or out to eat. Anything that involved lots of activity, people, noise or lights was to much for our newest arrival. Everything had changed. They would often sit in the next room covering their ears, holding each other and crying because they couldn’t ease their youngest brother’s screams.
Then we found SibShops! The children were a little apprehensive about their first visit. They felt that no one else could possibly know what it’s like to have a little brother like theirs. He always screamed! They never got to go anywhere. Their friends couldn’t come over.
After that first visit, the children were all smiles. They rapidly began to tell me about not only their new friends, but their friends sibs (that’s SibShop speak for Sibling). They told me how one friend had to deal with their sib screaming all the time. Another friend told them that they couldn’t have friends over because anything “out of the ordinary” caused serious issues with their sib. Another told them that everywhere they went, their sib had to go because there wasn’t anyone to watch him!
The change in my children since attending SibShops has been incredible. They no longer feel that their life is lacking. It’s different and they’ve learned that different is OK. They no longer worry that their brother is never going to be able to “have his own life” because they’ve met adults in SibShops that have had to cross hurdles and obstacles similar to those their brother will have to face. They’ve become educated, not only on their own brother’s needs, but the needs of other families as well. They show an understanding to others that I had not seen before and are quick to help families who aren’t considered “typical”. They reach out to those with health problems, physical ailments, and other special needs. Most importantly, SibShops has instilled in them a sense of belonging. They know that they can go there and talk about the stress they have in their life. They know that they won’t be judged but that their feelings will be validated. They know that it’s OK, and that as each day goes by, they’ll learn a little bit more about what can be done to make life a little bit easier for everyone.
Pook went on vacation without me and his father for a full week!!!!
Did I panic before he left? Absolutely!! Did I give thousands of instructions convinced that something would go wrong before he left? Yep, sure did. Did I send out prayer request for everything to go well for him on the trip? Guilty as charged.
To start with, Pook was going to be traveling with his uncles and siblings. His uncles have never really spent that much time with him. One is college educated on special needs, but I know my son isn't your "textbook" case. I kept giving ideas, suggestions, instructions. I didn't agree with the time they were leaving and tried to convince them of an earlier time. Instead, the actual time they set off ended up being an hour after the time they planned.
Their plan was to leave at night, a couple hours after bedtime so that the kids would sleep the majority of the time they were traveling. They planned plenty of time for stops along the way. I managed to come inside after they left and go to sleep. I woke early and even managed to wait an hour or so before calling them. At 8:30am I called to see how they were. I was told the kids were all still asleep! What?!? Pook asleep at 8:30am?? Did he sleep straight through the night? Was he OK? Why was he still asleep? My brother patiently explaied to me that Pook was fine. He was asleep because they'd already made several stops along the way and Pook was awake for these stops. They went to Walmart and woke Pook up to go inside. He fell asleep when they put him back in the car. Then there was the pit stop at the gas station, where they got all the kids up to use the bathroom and buy sodas. Then, they stopped for an early breakfast at Shoney's.
My mind raced frantically! Waking him up through the night?? A child it took us this long just to get him to sleep through the night and medication (herbal and prescribed) is required? Walmart??? The place he drives by and begs not to have to go to because it's so loud and it hurts his ears and eyes. I shook my head, kept my thoughts to myself, and figured Mom would have her hands full once he met up with her.
After I got off the phone, my mind begin to churn. My brother said Pook was very well behaved in Walmart and it didn't seem to bother him. Could it be that Pook can tolerate Walmart in the middle of the night because there isn't so many people there? Is it substantially more quiet? Could this be a way to help him handle it better....by taking him occasionally at nights to get more accustomed to it? Where else is there we don't go that he might enjoy if we went at night? If we go at night, will it ease his anxiety the few times we do have to go during the day?
And, what about Shoney's? He managed a buffet style resturaunt with no meltdowns? He was able to pick out his food AND eat? Again, is it because the early morning hours avoided crowds? Is it because he was refreshed from having just woke and not yet stimulated? What other places are there we can visit early morning when he first wakes?
Soda? Well, we won't go there. It was caffeine free and free of artificial dyes and everyone loves a special treat now and then.
Pook ended up having a great trip. He didn't get to bed on time most nights, but spent his entire day in the water which seemed to counteract the usual negatives of a late bedtime. He does adore water and it is so calming for him. He had so much fun at the pools that he told me he loved me and missed his Daddy but he did NOT want to come home yet.
When his trip ended, and he did come home, he seemed to transition fairly well. He's had his issues, but nothing like what I expected.
Overall, I learned alot from this experience. First, I learned that doing things differently won't always lead to disastrous results. Second, I've learned to embrace new ideas as they just might work. Third, I've learned that sometimes the transitions are worth the fun. Fourth, I learned my youngest can survive without me or Daddy for a week. Fifth.........this all means that I am soooooo planning an vacation with no children to celebrate my one year wedding anniversary later this year.
Trusting someone else with your child is never easy. Trusting someone else with your child that has special needs is incredibly hard. Doing so can open the door to many rewards and much needed breaks for Mom and DAd!
Monday, July 26, 2010
My husband went to work today with one of Pook's toys in the truck. Pook is now standing on the front porch with his oversized underwear on (since ones that fit drive him crazy) and an adult cowboy hat on to block the sun from his eyes screaming for his Dad at the top of his lungs. He's calling him to come home and bring back his toy. He can't fathom that his Dad can't hear him. We've tried to explain that it's far away, but Pook says he can hear far away (farther then any of us). We've explained that there are fans running where his Dad works and he can't hear him over the fans. But, Pook wants that toy. He's had it for days and it doesn't process in his mind that it can be separate from his body. It's supposed to be 94 degrees today, so obviously staying on the front porch in the sun is NOT an option. *sigh
The kids attempted to lure him in with a balloon he got at the grocery store last night. But, the helium is no longer making the balloon float and now he's spazzing because A) he doesn't have his toy and B) his balloon won't "work".
He's still not quite leveled back out to where he usually is. Not sure what is going on. I called to get him into his neuro but it will be no less then 4 months before they can squeeze him in. That's the downfall to having the best neuro ever!
His sleep cycle is messed up again. I honestly feel I can contribute it to the neighbor periodically having music played so loud through the night that it wakes him repeatedly. It's such hard work to get him on a good sleep schedule (good for him is if we hit a 4 hour stretch, and more then that are miracles from God). His bedtime, pillows, stuffy, sheet, location, etc all has to stay the same night after night to ensure sleep. Banging music and bass from next door does not help that at all!!
The worst part for me personally is the lack of time to get anything done. Then, when I do have a bit of time (like now as he stands on the front porch)I'm so emotionally drained that I take a bit of time to release (hence my blogging).
Pook has recently gotten back to the point where everything has to be in a precise location. Everything must be put back where it came from. I'm sure this is due to our moving from one house to another. This is most likely also what is causing him to short circuit. If I had my way, I'd never move again! OK, well, if I could get a place he would do well in I'd ever move again.
I'm grateful for all those that understand where he is, what he's going through. I'm grateful for those who offer their support to me. I'm grateful for those who offer support to Pook's older siblings, like those who facilitate Sibshops (a support group for children whose siblings have special needs). I'm grateful that I am part of a church that has the best child care workers EVER and that once a week I get to spend time being taught of God uninterrupted.
Most of all, I am grateful that God loved me so much that he gave me this vibrant, beautiful, unique little boy to bring excitement and joy into our lives! I wouldn't trade today for the world!
Today is one of his “bad” days. I saw it as soon as he woke up. But, today was also bill and budget day, call the doctor day, in general office and paperwork day. Rather then think it through, I tried to plow on thru the day as if it was one of his good days. WRONG WRONG WRONG.
So now, 2 hours of holding him so he could not hurt himself, his siblings, me or inanimate objects any more, he’s asleep. His sleep is restless. He’s twitching and jerking around so much it’s amazing he’s asleep at all.
And I am guilt ridden. As many times as this has happened, shouldn’t I have recognized exactly how “bad” of a day he was having? Shouldn’t I have dropped everything and cared solely for him? Shouldn’t I have known better? Shouldn’t last night have tipped me off?
Last night…………..The first thing I noticed was early afternoon. Pook said he couldn’t go outside barefoot because the rocks hurt his feet. Anyone who knows Pook and his super hero pain tolerance knows this is highly unusual. Later that night, Pook couldn’t handle even the suggestion of sleeping in his room. He didn’t want his bed, his blanket, his bedtime bear….none of it. The mention of any of it seemed to terrify him beyond belief. He curled up behind me in bed and buried his head deep between my shoulder blades. (he also didn’t want anyone to “see” him). He dozed off. When his father came into the bedroom later, Pook seemed to be calm and sleeping. So, we decided to put him to bed. Except, Pook seemed to have some kind of built in alarm that triggered as he neared his bedroom door. Screams of “No, No, No…..I can’t do it” echoed thru the neighborhood. So, in defeat, he was carried back to my bed and my husband put out a pillow and blanket on the couch for himself. Pook slept fitfully for the first few hours, but as I didn’t awaken after that, I assume his sleep went into his “normal” (which still involves lots of movements and twitching).
This morning, Pook woke but looked as if he hadn’t slept in days. His puffy face and slitted eyes. His stooped shoulders. Then, there was his refusal to eat anything. His sis managed to get him to eat watermelon eventually. I sat at the computer working on the budget (bad idea) while I watched him eat his watermelon. He enjoyed the watermelon and the pictures I took, but his agitation was evident in the almost constant hand flapping that was going on. Hand flapping….something we haven’t seen him do in a few weeks. Hand flapping…..a red flag that things are going to get worse. Hand flapping……what should have told me to quit worrying about the budget and the bills and devote the day to him.
Just before nap time, he decided to eat the food that was offered to him several hours ago. He even decided to accept his grandmother’s invitation to come over for a bit. I sighed a breath of relief, sure that I had merely over-exxagerated what I saw earlier. Everything was going to be OK.
He came home easily at nap time, listened to his favorite song (Glory to God by Fee) and off to bed we went. He laid in his bed but when I went to leave the room he almost instantly hit full scale hysteria. OK, no biggie, I’d lie in the room with him for a bit. I laid down in his brother’s bed but Pook had to be closer. With our beds next to each other, I was sure he’d doze off. I mean, here in the past few weeks naptime has gone pretty well. Granted, some days it takes a while before he dozes off, but he’s taking naps everyday and that in itself is a miracle. Yet, he couldn’t be still. He kept twisting and turning. He kept talking and even his rope seemed to make him agitated. Yes, his rope….the one thing he’s been obsessed with since birth. The one thing that we can usually depend on to calm him. I thought that maybe he was just trying to get out of taking a nap although Friday’s is usually the day he tries his best to sleep. He knows that each Friday evening he gets to see his best friends and that nap is mandatory to go. So, I told him that unless he laid quiet, I was going to leave the room. (bad idea)
My leaving the room somehow translated in his mind that I was leaving the home. He ended up standing in front of the front door begging me please not to leave him (did I mention that 2 weeks ago he hit severe separation anxiety?) I decided to give him a bit of time up and about to calm down, then we’d try again. Except, he couldn’t calm down. He begin throwing things, breaking things, hitting, kicking, slamming his body into walls, etc. He was going to hurt himself, or others. So, I sat him on my lap and held him close to prevent injury to himself or me. This usually calms him in a matter of minutes. Not today. He grew more and more agitated. My attempts to release him would only result in immediate destructive behavior. After about an hour, he begin screaming that he was hungry and that if he didn’t eat he would die. I asked him how he knew this and he said he was told in a dream. He had to eat. He had to eat a peanut butter and jelly sandwich. I figured he wouldn’t eat in his extreme state of agitation, but figured it couldn’t make things worse. (bad idea) So, his brother made him a PB&J and brought it to him. He lost it!! It didn’t look like pizza and that was just to much for him. Yes, I said pizza and no I have no clue! He wanted it to be PB&J but kept saying, “It not look like pizza!” (could this be Apraxia?) All food was removed from his presence.
We had 2 full hours of holding. I would periodically attempt to release our hold, but before I could even fully release, he was reaching out to throw things, hit things, slam a part of his body into something. Towards the end of the 2 hours, he finally cried out, “I can’t stop Mommy. I can’t stop. I can’t stop. I can’t stop.”
What?? He realizes what he’s doing? He wants and desires to stop? He recognizes that somehow he can’t???? When did this happen? Has this always been the case and he was merely unable to articulate it? How long has he had these feelings?
I assured him that it was OK that he couldn’t stop it. I explained that even though he couldn’t stop it, God could stop it for him. That we just had to ride it out and trust God. I told him God would make it all OK. After all, I’d been praying while holding him. Why didn’t I let him know it?
Eventually, he had me wrap him up in a blanket. Completely cocooned. He said he couldn’t have anyone look at him and for me to tell his brother and sister not to look at him. He twitched, and jerked, and finally fell into an exhausted sleep.
And now I wonder. If I had dropped everything today and just focused on him, would it have escalated to his point? If he had gotten to bed on time instead of a bit late last night, would things have been better? When he first said that shoes hurt his feet yesterday afternoon, should I have attempted to cancel plans so that we could take him home and decrease all possible stimulation? Does today go hand in hand with the severe separation anxiety he developed a couple of weeks ago? Is it connected to his becoming obsessed with irrational fears that I’ve seen exhibited lately.
I called his neurologist before nap time today. It’ll be November before he can get in. November. An eternity to wait for answers to questions.
We’ve gone 4 and ½ years now with a broad spectrum diagnosis. His official diagnosis is “Sensory Integration Dysfunction with Autistic Characteristics and Migraines”. It’s been discussed that he shows signs of possible Aspergers and Verbal Apraxia. No diagnosis of either yet.
I just want to help my son. I just want days like this not to cause him so much pain.
I am so thankful that God never gives us more then we can bear. In my life, I always looked at how that applied to me. Yet now, I look at my son thrashing around screaming, “I can’t stop, I can’t stop” and am so thankful that I know what God is giving him is not more then he can bear.
My heart aches for Pookie today. I try to focus on all the positive things he can do due to his uniqueness. The combination of his super enhanced fine motor skills (due to super sensitivity in fingers) and his obsession with ropes equates his tying knots that would rival the best Boy Scout ever! His high pain tolerance and lack of fear results in his being able to perform incredible physical feats! His super strength proves to be a great asset. His recognizing that he hears, sees, and feels things that others don’t makes him more open to those that are “different”.
Yet today, my heart aches for him and the things he endures.
There's just so many ways Pook has grown lately, and I'm not talking physically.
First, Pook has a girlfriend! Yep....a girlfriend. It doesn't matter at all that she's over a decade older then him, he adores her. Each time he sees her he pulls at me until I take him to her. I have no idea why I must take him to her, once he's with her he forgets I exist. He snuggles up to her, bats his eyes at her, and is calmer then he has ever been. She puts him down and he follows close behind her. So close I'm sure she can feel his breath! He holds both his hands in front of him, like a small puppy that rises on it's hind legs begging for treats. She stops, he stops. She turns, he turns. The look of adoration on his face leaves me speechless. (and not many things can do that!)
Second, his concepts of himself and the world around him are growing. He told me the other night, "Mommy, I can change my mind! Watch....yes, no, yes, no, yes, no." A few days later he asked me about someone else, "You mean she changed her mind?!" He seemed quite shocked that someone else was capable of doing so!
Then, there is the fact that he's started telling some tall tales. And boy has he told some whoopers!! I know, it's a normal stage of development. I'm pleased that he's right on track with this stage. I can't help but giggle as I hear the stories he tells his father and as I see the expressions on his father's face. I'm not sure which part I like hearing the best.....Pook's stories, or his father's responses!!
The other night, leaving a friends house, I told Pook to get his car seat straps on. He told me he had. I looked back and thinking I was going to be on top of this conversation, asked him to show me. He looks at his chest, pretends to pick up his straps, lifts them up for my inspection, and then looks me straight in the eye. I tell him that I don't see any straps and completely exasperated with my incompetence he says, "They're invisible! Duh!" (Duh....my 4 year old says duh!) Sooo, now Pook has his invisible straps and the "other ones" I force him to buckle!
Everyone has noticed a difference since Pook started his cod liver oil. It's taken 4 years before his little bowels could tolerate it, but I am so thankful to God that he can now. His speech is improving by leaps and bounds, his attention span is longer, and he's soooo much calmer. At this stage, if it weren't for his speech delays and his obsessive compulsive behavior, he'd be clocked at "typical".
It's taken 4 long years full of tears, both mine and his, but finally it looks like things are starting to settle down. All the things that I was told couldn't happen with him, are. All the progress I was told he couldn't make, he is. All the dreams I've had for him are starting to come true.
Thank you to each one of you who believed in Pook. And thank you God for creating him exactly the way he is. Uniquely divine!!
I'll admit it, I'm struggling. It just seems I've fought so long for Pook and am still fighting so many of the same battles. Why??
We just came from a lengthy vacation. We stayed at a secluded cabin, on top of a desolate mountain, with the driveway coming off a dead end road. The sounds of birds and the running creek is all we heard. Days were spent outside playing amongst God's creations or splashing in creeks and lakes with water so clear you could see to the bottom. Everywhere we went there was the sound of water rushing through rocks. There was no traffic, no television (except for the occasional viewing of Facing the Giants or Flywheel at bedtime), no computer, no telephones, no company, no loud noises.............just peace and quiet and serenity. With all that said................Pookie was "typical". Yes, I mean "typical" as in "normal".
Our first day up was rough. Then again, what 4 year old can handle a long car ride well. Add to that the unusual events of packing out things before leaving, and having to go to a place we'd not been to in a while..........well, you can imagine his struggles. Yet, the next day he jumped out of bed saying, "Mommy, I hungry". That was my first sign that something wasn't quite right. A "normal" morning appetite that continued day after day while there? This from the child we can rarely get to eat breakfast and struggle to get him to eat each mealtime?
Throughout the entire day, he didn't have a single meltdown! In fact, on our entire trip he had only three meltdowns (not counting the day we left to go there and the day we left to go back). Two of the three meltdowns occurred when we were taking the scenic route (aka= LOST) and were cooped up in the truck (5 people cooped in a small Ranger pickup). Of course, by that point in time we were all grumpy and tired of being cramped up for that long despite the beautiful mountain views. The third I'll discuss further below.
The day before we left we visited a swimming hole/waterfall we'd been to earlier in our trip. Although located right off a busy highway, the sound of the creek and waterfall drowns out all sounds of traffic. It's a secluded paradise requiring a park on the side of the road and a trek down an unmarked foot path. The swimming area has water cascading down rocks just above and just below, with a waterfall just below that. There, we splashed, laughed and had a joyous time. However, as with our previous trip there, teens and adults came to jump off the waterfall. Pook, with his lack of fear, decided to do the same. As I chased him down the shore and grabbed his ankle as he scaled an unbelievably high rock (I promise you he's half monkey), I kept telling him he could not jump. While holding his ankle and attempting to persuade him not to jump, I asked a young girl sitting on a rock next to the one Pook had climbed to hold my camera, thus enabling me to climb up on the rock with Pook. I passed over my camera to the stranger on the neighboring rock and climbed up beside Pook. I proceeded to explain to him the same things I had two days earlier. The usual "it's to deep" and "only grownups are allowed to jump" and so on and so on. The girl who was sitting with the one who had now held my camera for several minutes spoke up and told Pook that it wasn't really that fun jumping off. E&S then proceeded to help Pook realize that he'd much rather come sit between them then jump into a waterfall.
And so begin a new friendship. E&S were great with Pook! I explained that I had to watch him very closely as he sat with them as his obsession with jumping would not be easily forgotten. We spoke of his previous diagnosis and the ones yet to come. S looked at me right in the eye and told me that she would have never known Pook had special needs, apart from his obvious speech impediment. I was taken aback and had to contemplate exactly what she'd said. Yes, I've had others tell me that they couldn't tell or didn't know Pook had special needs but it was always followed by, "I just thought he was really over active" or "He just appears to have some behavior issues". Yet, S didn't follow up her statement with anything else. To all appearances, I had a normal, healthy 4 year old with no special needs! I know part of it was the white noise of the waterfall, but something clicked for me. The whole time I'd been there I had the nagging though, "Pook seems normal here" but kept pushing it down. I mean, that would just be to good to be true now wouldn't it? Yet, here was someone else recognizing it and putting it into words.
We ended up leaving the falls and heading back to the truck with E&S walking with us. As the sounds of the traffic begin to be heard, Pook reverted back to his "usual" self. The girls recognized the difference in him. Seeing him at the truck near the busy highway, they could recognize that something wasn't quite right with him. We stayed a little to long near the highway talking and exchanging contact information. Pook couldn't handle the close proximity of the traffic or the unnatural noises the rigs and cars made. His getting in his car seat became an olympic event with my body being strained physically in an attempt to take a rigid, screaming, thrashing body and place it into a 5 point harness. Once back towards the secluded area we were staying at, he calmed and was seemingly fine.
I've done my research. I understand that sensory stimulation has a direct impact on Pook's days. I know that sensory stimulation for him are things we don't even notice. The smell of clothes laundered in scented detergent, the breeze from a ceiling fan, the sound of traffic that we can't even hear, the tags in his clothes, the radio even when playing his favorite song. Each bit of sensory input pushes him to his threshold. When that threshold is reached, everything becomes a battle and struggle for him.
In the past year, Pook's sensory input has greatly increased. Visitations with his father weekly take place in a childcare environment with bright colors, numerous toys, and traffic on a busy street. Having found a wonderful church family, one to two times a week we attend. Then, we meet with a few families one night a week for dinner and a Bible discussion. We've eased him into these things. Partly because I so desperately needed the interaction and partly because so many educated people have stressed to me the importance of getting him social interaction. I've been pushed to introduce him to various sensory stimulation that I previously sheltered him from. I've been barraged with well meaning advice telling me that one day he'll have to deal with these things and must get used to them now. I've been haunted by visions of his being a teen and having a meltdown in the grocery store because there were to many unknowns and to bright of lights. And so , in an attempt to brace my child for the world, I've entered into his life regular shopping trips, music and educational television shows, childcare settings, trips to popular and populated parks, and so on. And with each introduction I've watched him melt a little bit more.
So, today I sit here writing this and am struck with a profound guilt. I KNEW what was best for my son in the beginning. We lived at home in a created peaceful, low sensory environment and he functioned greatly. We banned scented soaps and softeners, incense, and candles. We got rid of the television and rarely listened to music. The telephone's ringer was never heard nor was the answering machine when it picked up calls with the volume turned all the way down. No one came by without advance notice and we didn't make spontaneous trips. He was not required to visit grocery stores or department stores. His clothing was all soft, seamless and tagless and running around naked all day was acceptable. Shoes were unheard of, schedules were strict, bedtimes were expected to take a minimum of an hour. His diet had no corn syrup, no dyes, nothing artificial. We were content and he was a unique child that appeared normal to anyone who did visit.
Yet, I let all that change. I let people seemingly more knowledgeable then me persuade me to change the way I did things. I placed my trust in well meaning people instead of the things God had shown me. I let fear overcome my faith.
So now God, I turn my son back over to you. You have given me a most beautiful gift and charge. You have determined that I should raise him according to your Scriptures, your morals and values, and your will for his life. It doesn't matter if he grows to never enter a large public shopping center. It doesn't matter if his clothes are always going to look like pajamas. It is completely irrelevant if, once he's grown and on his own, he refuses to turn the ringer on his telephone or doesn't have a television. It's fine if he decides to live in the country secluded from traffic and noisy neighbors. It's OK if in life he prefers the company of only a couple dear friends instead of crowds and large groups. If he'd never been diagnosed..........if it was unknown he had unique and special needs..............then those choices would simply be considered preferences and not "issues requiring therapy".
And so, take my son God and mold him into what you have planned for him to be. You recognize his strengths and weaknesses. You know the depths of his being and all that he needs. Although you may not be responsible for his being born with special needs, you created him unique and beautiful. You can take any weakness and make it a strength. Let his life glorify you and your relationship with him never falter.
Forgive me Lord for doubting. Forgive me for allowing fear to overcome faith.
Thank you for using this vacation to show me exactly what my son needs and how to give it to him. You are amazing God!
I waved as Pookie went down the driveway in my aunt's car. Just he and her, on their way to pick up his cousin from school. They are going to spend a few hours together. As I watched them pull away my mind frantically scrambled to form a complete thought, yet as soon as I thought of one another was rushing in to take it's place.
*He's never gone off with another adult alone like this
*What if no one understands what he's trying to say
*If he gets hurt, he won't know to tell anyone. What if no one notices?
*I hope he doesn't hit anyone or anything
*Wow, is this really happening?
*I'm so proud of him.
*He's smiling and is so happy
*Please God don't let him get discouraged, ignored, insulted.
The first time I sent the older two off with another adult, I felt a nice, soothing yet melancholy feeling. A kind of "ahhh, they're growing up so fast" and "where did time go" type feeling. Yet, they could communicate. They could talk and be understood. They knew if they got hurt and would report the injury immediately to whatever adult was nearby. They didn't get frustrated because no one understood them and rather then take the time to figure it out, they were ignored. They didn't decide not to go places anymore because "they can't hear me".
Yet, I know that I can never protect Pook from the atrocities this world sometimes shows people with special needs. There will be plenty of times in his life where he is ignored because he is not understood. There will be plenty of times in his life where he wants to give up because he feels so jilted and alone. I can not protect him from these things. Rather, all I can do is let him know that God loves him unconditionally, all the time, no matter how things seem. All I can do is let him know that we love him all the time. All I can do is let him know that there will be people in his life who will be his friends even if they can't always hear them.
And so, I am going to take a deep breathe, play some music, say another prayer, and tackle the mounds of paperwork I must complete before vacation.
I'm going to think about the story I read yesterday of a bandit runner who, although in first place, went back to where a man with Asperger's ran and encouraged him so that he finished first. And, I will pray that today my son's life is touched by another child with the same compassion that bandit runner had.
I sit down at the pc with the full intent to blog……….but then get distracted. Someone sent me an email that got me to wondering…..or I read a post on FB….or, like today, I checked out an updated blog. And so on a tangent I go and before I know it, the day is over and I still haven’t blogged. *sigh
I know I keep promising that I’ll be more up to date with my two blogs. My intent to blog is to reach out to others who have to go through the same type of thing, but not getting feedback in the form of comments/followers sometimes makes me wonder if it’s worth it. But, I’m pigheaded and believe that someone needs this blog, so here goes!
I read a blog today about an assistive communication device. Those of you who know Pook may remember his “Mighty Mo”. It was a loan from the North CarolinaAssistive Technology Program.At a time when Pook had no words, this box gave him words. This, in addition to the speech therapy he’s received for the last 34 months, helped him to enter the world of the speaking. I had to return “Mo” when the loan was up, and at this time he had some words to help make his wants known. He’s at a point now where, between my daughter and myself, we understand the majority of what he says. He still gets frustrated when he speaks and we don’t “hear” his words, and at these times I think back fondly to “Mo” and wish he were still here.
The blog I read today (Making Weird Cool) talked about Proloquo2go. Basically, it’s a “Mo” for your Iphone or IPad. A small, in style, tech version of “Mo”. As I read about Proloquo2go, I started to think about the limitations that Pook has in his speech. As before, I wonder how much his inability to communicate affects his behavior. Is he so easily frustrated solely because of his communication issues? Is the delays we see in his social skills a direct result of this? If Pook had a “Mo”, would he initiate conversation with others instead of shaking his head and telling me that other people don’t “hear” him?
The “Mo” that we had was heavy….and bulky….and a pain in the butt to charge. Yet, it allowed Pook to share with us so many things he otherwise wouldn’t have been able to. We primarily used it at home, for our personal communication with him due to it’s weight and size. Yet, a pocket size Mo……what could this open for him?
For some odd reason, Mr. Magorium’s Wondrous Emporium just jumped into the forefront of my mind. Why? Maybe because the movie shows that nothing is impossible if only you believe. Do I believe that a piece of technology could open up new doors for my son? Do I believe that enhancing his ability to communicate would help his behavior? It’s not about what I believe. It’s about what he believes………..what he dreams of…………what he desires. And, at 4 years old, my son has told me already that he wants “ebeeboby” to hear him.
So, Pook needs a way to express more then he can. It’s time to find him a new “Mo”.
Pook watched “Mr. Holland’s Opus” with the family the other night. I really didn’t expect him to sit through it. I absolutely did not expect his comments afterward. Pook asked me if I saw all the people that had signs. It never occurred to me that, although he has learned some signs and we use them frequently among us, he’d never seen what signs could do! He didn’t understand the full concept of signs being used to fully communicate when no one else could “hear”. He has since said that he wants everybody to use signs. He then listed off all his friends and family that he wants to hear him. He’s intent on learning more signs now. I tried to tell him that not everyone knows signs, but he is convinced it’ll work for him. As usual, he’s learning signs faster then me.
Pook has come along way. Of the things he says, he’s usually understood. What most people don’t realize is that he doesn’t say things he thinks other people won’t “hear”. His brain tells him that he is saying exactly what he thinks he is trying to say, so in his mind it is still other people who just can’t “hear” him. Even now, I’m a mother who looks at my son and wonders what he won’t say, because he thinks I won’t hear him. *sigh Yep, it’s time for a new “Mo”.
Pook did fabulous with his first dental appointment. When the paperwork was sent, a flyer with a photograph of the dentist came also. This enabled us to show him the picture so that when he arrived he would know one familiar face.
Upon arriving, we weren't sure how things would go. The dental assistant took his sister in first for x-rays, allowing us to stand in the hall and watch. He then got her settled in and brought Pook to his table to lay on. He used lots of hand gestures while speaking, stayed on Pook's level, made constant eye contact, spoke in a soft and gentle voice, and explained each and every thing he was going to do in a way that Pook understood!! Not only did Pookie get his teeth cleaned, he also got them x-rayed! All with no problems!
The dentist office was small, the open bay area had only three tables. Everyone who worked there spoke in a calm, quiet voice. There was no rapid paced footsteps or anyone rushing. This pediatric dentist knew all the right things to do and made sure everyone did it!
Finding doctors who understand what your child needs is difficult. It took me an entire morning of making phone calls before I found a dentist I thought would work out. I was frustrated spending hours on the phone for a dentist, but today showed it was worth it.
Keep in mind though, despite your best efforts, things don't always work out for the best. Sometimes you can't ask enough questions and end up in a doctor office that screams sensory overload! At those times, it's often easier to just walk away and start over again then force your child to go thru, what for them, is a horrible experience that may stay with them for days.
How can you help others find doctors that are great for children with special needs? Post reviews! Google the name of your doctor office and then write a review. Tell others how wonderful (or horrible) the doctors office is. Also, don't forget word of mouth. Tell others when you talk to them about the wonderful doctor (or in this case dentist) you've found for your child. Email it to all your friends. You never know when they might run into someone looking for the same doctor you've successfully found.
You've heard the saying, "It takes a village to raise a child." Look for ways you can be that village!!
It's time to schedule an appointment for my son to see the dentist. I've decided that if he is accompanied by one of his siblings who is also seeing the dentist, he'll be less fearful. However, the only dentist that will allow this are those that have open bay areas. Yet, I can't expect Pook to be able to maintain in a room with several other children being treated at the same time. First, the sound of all those machines running at once will rattle him. I can only imagine if a child begins to cry. Last, I need to be able to accompany him when he goes back as he's hit this stage where he can't stand to have me out of his sight. So, the search begin.
I called several pediatric dentists only to find out they had a strict policy against parents going back with their children. OK, so I understand that many children do better without a parent in the room to see their theatrics....but to have NO exceptions at all?? I have no problem with my other two children being seen without me in the room, although their dentist always let me travel back and forth between their two rooms at will. Yet, in no way do I want my youngest, who isn't able to effectively communicate many things, to be taken back to a room by himself. My son isn't able to articulate the things that bother him or even hurt him. No matter how good the dentist is, or how much experience he has in dealing with children with sensory issues, each child is unique. So, first step is to just find a dentist who will allow me to go back with my child. After several phone calls, I was finally able to find a dentist who would allow me to come back. However, this dentist ONLY had an open bay area and in the event that it was to loud, would not be able to take him to a private room. So, more phone calls.
After a very exhausting and frustrating morning, I finally found a dentist that had all we required. First, there is an open bay area. So, both Pook and his sibling can go back at the same time. They'll be able to both have the same thing done, next to each other, in an effort to calm Pook. If the open bay area should become to loud and upset him to much, we will be able to take him to a private room. And, I can accompany him at all times if I feel this is necessary.
Now, after the four hours I spent online and on the phone searching for a dentist, I couldn't help but think that each dentist website should spell out their own specific rules. I also couldn't help but think of the recent news article of the pediatrician that was charged with so many child sexual abuse charges. Did his office have the same policy?
A few days after scheduling Pook's appointment, we were lying on my bed talking. He looked up at me and smiled and I was horrified to see that one of his teeth had a huge chunk taken out of the front of it. I begin to examine his teeth and saw that many of his teeth were chipped or had pieces missing. Now, several months ago I took him to the doctor because he was grinding his teeth so severely at night that it could be heard in the next room. I was assured that unless it interfered with his sleep, or his permanent teeth were coming in, it wouldn't be an issue. I later noticed that he grinds his teeth when he's excited. Apparently, his teeth grinding is an issue if he has so many pieces missing!
How hard does a child have to clench and grind their teeth to chip them? I recall my oldest son falling at school and hitting a counter. It pushed his front tooth up into his gum, but it didn't chip it! A bit panicky I typed "teeth grinding autism" into google only to find out I wasn't alone In addition to chipped teeth, some children actually grind their teeth down!
My mother assured me that Pook could be given a mouth guard to wear at night to prevent him from grinding his teeth. Soooooo, the child who has to have all tags cut out of his clothes, wears his socks inside out, can't wear shoes that fit (except boots), won't sleep with a different blanket, must have everything the same all the time, and flips out if you even attempt to have him try something new...............is supposed to wear something in his mouth each night????
I guess we'll wait and see what the dentist says. If she mentions a mouth guard, do you think she'll find my hysterical laughter unsettling?
