Tuesday, January 25, 2011

The Equipment Challenge

Bookmark and Share
Measurements are in to attempt the Rifton Pacer Walker for Noah, I hope it works. I'm equipment leery since Noah is very particular about what will work for him and what won't. The kidcart is still not workable, and I have a borrowed Twist pediatric stroller that sounds like it will also become part of my collection whether we want it to be or not, that Noah indeed may hate as well- even if it is modified - finding it's way into the basement to collect dust. I found a stroller online that I'd love to try for Noah called the Convaid Cuddlebug, but it sounds like I won't be able to get my hands on one to try it for Noah. And just by looking at it I think it has strong possibilities due to soft fabrics and design that would make it sensory heaven for a little one like Noah. I know he needs something plush and soft. And I know what he likes in a stroller and I'm trying to find those qualities in a pediatric stroller/wheelchair. It's very much a frustrating process for me, and so many other special needs families. We have ideas of things we think might work for our children but there's always something standing in the way whether it be a manufacturer, needing a specialist, or the ever popular insurance denials.

I also was discussing obtaining a stander for Noah, something that may or may not be challenged by Medicaid and something hopefully we will be exploring in March. Right now his only options are laying on his back and it would be nice to give him some time during the day with other options to strengthen his legs so hopefully he can learn weight bearing. Our house is quickly becoming super small, something I never dreamed would happen when I first bought it. Noah's equipment takes up a lot of space. It's nothing like having regular baby items around, or gadgets, this stuff is heavy and cumbersome, and things we need for him. It's weird trying to already handicap modify the things I can, like removing my shower doors to get Noah in and out of the bathtub, trying to find places that will help me remodel my first floor with hardwood and lengthen my doorways to accommodate a walker, knowing in the end if Noah isn't mobile that I very well will have to consider abandoning this home all together to find one that is handicapped accessible. My mother warned me when I bought this house that it had a lot of stairs. Little did she know then how complicated this house design would actually wind up being later on. This was my dream home, and I worked so hard to get it, fix it up, and take care of it. And now I look around and just remind myself all the time you can't plan your future. You think you can, but it's impossible to know where you'll be tomorrow. It's such a false sense of security that we give ourselves.

Noah's therapists say usually you have to have homes custom built, like we have any pennies to rub together for that. But again I have a tendency to put the horse before the wagon. And really I shouldn't box Noah in prematurely. Although I try to be realistic about our lives, I still have the burning hope that I cling to. That hope that I refuse to abandon. The hope that Noah will find away around all of his neurological damage to make leaps and bounds. I'm just hoping this year brings something simple for us to celebrate, maybe a first word, or being able to sit, just one thing that we can celebrate and that I can put in a baby book that say yes you did it!

"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move."
The Bible, Matthew 17:20


Creative Commons License
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Thursday, January 20, 2011

Sleepless Struggles

Bookmark and Share
Noah is still struggling a bit in sensory class. Our neighborhood walking friend joined us for class this week and it was so great to see her. They are closely matched in what they can do and what they can handle. It was rather nice not being the only person with a child that couldn't participate in every activity. I don't know if she'll be able to make class with us in the future or not, but we enjoyed our time together. She's a sweet little girl, she's grown in the months I haven't seen her because it's been too cold for walks around the block. Chris and I are considering withdrawing Noah from sensory class at the end of this six week session. Maybe it's too much too soon, or too many kids. At this point there is no way Noah could handle preschool setting, there is just too much going on in a class room full of energetic little ones.

Noah had one of those nights again where we were up every few hours crying and screaming. On the average I think Chris and I survive on three to four hours of a sleep. I'm sure we have premature bags under our eyes and always look like a train hit us. I think around 4:30 I just decided to have a good cry in my pillow with Noah screaming next to me in bed. It's so frustrating when you can't soothe your own child. Sometimes you feel like you're failing at a parent, but then I keep trying to remember this is all part of brain damage, nothing is the same after your brain is changed. You don't sleep like everyone else, you don't move like everyone else, you won't think like everyone else, or sound like them. It alters every aspect of your entire life. Not only for the child but for the parents. Life as I knew it will never be back. I will never get off this road, my detour will never end.

Whether Noah naps or doesn't nap it doesn't make a difference in his sleep patterns. I noticed today when he was napping with me that his arms moved frequently like a startle reflex in his sleep, maybe that's what keeps waking him up is movement. I thought about using a weighted blanket had one picked out was going to place the super expensive order, but his therapists tell me not to do it becuase Noah cannot move things away from his face and a weighted blanket could suffocate him if he gets it over his head. So that idea seems to be out. Last night he was up every one to two hours, he didn't want to sleep in bed with us, so Chris slept on the floor with him, but nothing we did really worked. Sometimes it all is a very discouraging feeling. Since Noah's ER visit and ambulance ride in December things have been even more difficult for him than they were before. I feel like we lost ground somehow, that we went backwards.

Today we attempted pool therapy, but when we got there the pool wasn't working so we attempted to do occupational therapy things like the platform swing and such. Things that usually Noah really loves to do. But he had a hysterical breakdown, and nothing I or the therapist did could soothe him. She's trying to teach me all these touching techniques to make it better, yet she reminds me every child has a different trigger and we don't know what will or what won't work for Noah. We just finally had to leave, Noah was still distraught in the car, something that is dangerous to travel with an upset Noah. I almost thought I'd have to pull over and try to give him a break so he didn't get sick, but then he finally started to calm down enough that I was able to keep going.

His pool therapist recommended respite help for Noah, knowing that we're just simply exhausted. Unfortunately we don't qualify for most programs because Noah is not G-tube fed or on oxygen. Even if we did, it would take a really special person to adapt to Noah. I worry that a stranger would become so overly frustrated with him that they'd injure him in some way. He is difficult. And I wouldn't want someone to hurt him or shake him just because they couldn't calm him down and they were frustrated. You have to love Noah through all the tough times, if you raise your voice or he detects in any way that you're frustrated he cries harder. I'm sure most respite care providers are used to dealing with children that lack the ability to get upset, those that are so medically fragile that they require very little maintenance. Noah unfortunately is very high maintenance and is very needy.

I passed a mom that today leaving that said if I can't soothe my child there is always medication. I wanted to react and tell her exactly what I thought of her two cents, maybe I should have but I didn't. I'd like to think she was joking but I don't think she was. Sometimes you have to forgive people for their ignorance on what they say. They see two minutes of a picture of your entire life and think they have the right to criticize and offer an opinion. She has no idea what Noah suffers from. No idea about our life or Noah. It's easy for an outsider looking in to say I'm sure lots of things. Walk just minutes in my shoes and you'd think differently. This life is not cupcakes and icing. I'm not living a fairytale. God I wish I was. Lately I think I've even bit a bit annoyed with God, shame on me I know. That certainly will get me nowhere fast. I want to know why he's not helping healing Noah, certainly the only miracle can't be that he survived his birth. There has to be more. I want there to be more. A mother can't help but ache for a child that is struggling. I'd gladly take his place, take the burden he must carry of being so physically impaired.

"God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way."


Creative Commons License
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Monday, January 17, 2011

Battle of the Bath Seat

Bookmark and Share
Noah's has had a Manatee Bath seat for many months now, but we had yet tried it out in actual water. We've still been using his infant to toddler tub. Chris and I had a wild hair that Noah might be ready for it. Of course he wasn't. Noah isn't ever ready for much. Chris spent some time taking down our shower doors (something you can't have with a child like Noah to get him in and out of a tub), I spent most of my afternoon chasing the loudest, most colorful, playful and happy vinyl shower curtain and rod that I could find. We adjusted the bath seat, all looked well. It takes up almost the entire bathtub. We have to of course fill the bathtub up much higher too. So the water actually reaches the chair.

We put Noah in it and he immediately knew the difference, and the screaming began. He kept sliding downward even though it does have crotch support, you cannot put Noah in the straps because that sends him into even more of a frenzy, he cannot handle being tied down. But if you think about it, what a frightening thought that would be for any of us, being tied down in a bath of water, completely helpless. I'm sure that has to be scary. It was definitely a two person job, I tried to rinse his hair using the shower head, something we've tried to practice after pool therapy for sensory issues that he has with people touching his head and neck. That made him even more mad.

His daddy tried drying him off quickly, and dressing him, all the while I tried to drain a tub that wouldn't drain, I finally got it to drain at a trickle, but obviously something is wrong with the drain. And why wouldn't it be because that is how everything goes. Always a problem of some kind for me to conquer in the land of special needs.

So I guess we go back to the toddler tub for a while again. I'm not sure what to do, but spending an hour calming an upset Noah all because we threw him in a bath seat, isn't healthy for him. He shouldn't get that worked up, to the point of not being able to calm down to go to bed.

Noah still isn't sleeping through the night and in fact his time of getting up has increased. I keep going over the cause, is he too cold? too hot? is he dreaming? is it the barometric pressure or weather changes? He much has the schedule of a newborn up every couple hours. Sometimes I can take him to bed with me, but it takes him a while to get comfortable and fall asleep. Other times Chris gets out of bed, even on work days, to try to help soothe him on the floor in his room when I'm simply at a loss as to what to try. And Noah lacks the ability to utter a single word to us to tell us what his problems may be.

At the end of the day, Chris incorporates into his nightly prayer, "Dear God, please let Noah sleep tonight", and I just want to throw my hands up and say what else am I supposed to try? Yet, I have to keep trying, have to keep going, because that's the only option I have is to continue to help Noah each and everyday with everything that he is experiencing and going through. None of my days are easy, I've long ago accepted that. But I do always wish I could make life easier for Noah.

We did have an amazing highlight to our day; a beautiful haircut and experience for Noah. I hadn't really intended to get his haircut today, but I stopped by a place close to home called Cool Cuts 4 Kids. I just wanted to see what the environment was like, if I thought Noah would be comfortable there, if I could still hold him on my lap, just get a feel for things. They weren't busy, so I opted to just give it a try. They found a really great Elmo DVD for Noah that he was able to watch in his own little salon stall, he was beyond happy. Alice was his hairdresser and is also the store manager, and she was like a gift today. An angel sent to understand little Noah and his needs. Her personality was soothing and calm, and although the lobby wound up filling up quickly with seven customers waiting, she was patient and didn't rush him. She allowed Noah to turn his head as he chose and I really think he enjoyed that. It gave Noah more control over his experience. He laughed and giggled, and she gave him the cutest little duck point at the bottom. The best looking haircut I think he's ever had. It is truly adorable. She made notes in the system so we could get the same cut again.

Alice said they do a lot of special needs children and get lots of requests. Truly she has a special touch to go with a special child. What a blessing she was today for us. We needed a good experience. We were overdue. And Noah left looking so very handsome.


Creative Commons License
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Saturday, January 15, 2011

Weather Challenges

Bookmark and Share
This week it actually felt like winter with snow included. It's a bit more challenging when you have to drive a stroller in snow packed parking lots to get to therapy. They really should come with optional snow tires for parents like me. I'm not sure which is more challenging holding and carrying both an arching toddler and stroller to a doorway, or just trying to force a stroller with a child in it through the snow. I imagine the same is true for wheelchairs, they don't come any better equipped for the weather.

Noah had a good pool therapy session, he wasn't able to hold the swim sticks this time more than just seconds, but he was happy and allowed us to wash his hair and give him a shower without complaint. His therapist holds him on her lap while I do the washing and the rinsing. Noah will always be a multiple hands job for things like that. It was nice to just sit and watch Noah at therapy be so relaxed. Even if it was just for an hour. It gave me time to relax a bit too. I just sat there with my feet dangling in the water, feeling the sun come in and offer peaceful reflections against the pool water. I don't get many moments like that. For a moment it felt like a kiss from God. A teeny tiny moment of reassurance that we'll be okay.

And it's always so nice to talk to all of Noah's therapists. They each bring to the table wonderful ideas, things to try, goals for me to work on at home. I had seen a poster posted to the therapy doors up prior to the holidays about a little boy that they were doing a fundraiser for that had fallen in the pool and was a near drown. He was on my mind for sometime. I asked how he was doing, and the therapist explained he passed away and didn't make it. It's amazing how you can be heartbroken for a family you don't know and will never meet. But I was. You just root for all of them. Every single struggle out there, you feel pain as if it were your own. You genuinely find yourself caring in ways so intensely that you want to take all the pain away that exists for any parent in the entire world. Sometimes you feel as a special needs parent you are very much fighting an uphill battle. You convince yourself with time that it will get easier, but I can't say that after two years things have gotten any easier.

Even last night I'm dreaming I heard the words mama. Just like dreams before of watching Noah walk and run, I want them to formulate into reality. I want them to jump out of my dreams and become real. But they don't. Teasers as I sleep for something I crave and cannot have.

My older brother brought over a wagon for Noah a few weeks ago. It's still sitting in the garage and I pass it every time I load Noah into the car. I wish I could put Noah in it, but I can't. He won't sit safely. I think about how I can rig it, to make it so Noah could be more like other children. Could I build something, sew something - make a gadget so he too could enjoy a red wagon. My brother said I could sell it in a garage sale if it wouldn't work, but I can't seem to really put it in the garage sale pile - maybe because it represents something I truly want for Noah and can't have. I never did seriously explore the Radio Flyer's Comfort Embrace Wagon, I knew the cost was out of bounds and although I know it has a five-point-harness I wasn't sure how long Noah would be able to fit into it. Yet Noah probably doesn't even care that he can't sit in a wagon, he doesn't even know the difference. I found this quote in a book the other day and it really does speak volumes. Although I still desire so many things for Noah, we have been blessed with that we did once only hope and pray for.

"Do not spoil what you have by desiring what you have not; remember that what you have now was once among the things you only hoped for."


Creative Commons License
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Tuesday, January 11, 2011

Social Fears

Bookmark and Share
We went and looked at some walkers yesterday with Noah's physical therapist. Although Noah is not tickled about the experience I was at least able to see how he walked in it. Which was nice. I liked the kid walk that we borrowed but it always seemed like he wanted something to do with his hands, and the bike type seat always seemed a little firm for him and he's got a tiny frame (he comes by it naturally) Chris and I both really looked similar as babies. The advantage to the kid walk is a child could easily come up to something closer, where other walkers really don't allow for that because they have a larger front frame. I thought about the Bronco walker after looking at some pictures that I had seen from online friends that have special needs children too. But it would force Noah's body forward and thus causing his feet to really launch from the front, and from what we can tell Noah does not scissor when he walks and is able to walk flat footed one foot in front of the other. Which I think is a good thing. Or at least in my mind I'm telling myself that it is.

I liked the way he was positioned in the Rifton Pacer, and he would have a place for his elbows and hands to land. It's a bit bigger than the kid walk, has a larger frame, but I like it's bucket seat better, it's softer and complete fabric that can be removed should Noah ever learn to increase his walking skills, something that only time can determine. And of course I come home and look at my house and think this home is so completely wrong for a handicapped child. It's carpet to carpet except the kitchen, the entire first floor really needs pergo or hardwood for Noah to navigate such a thing. Chris and I have no money to even pay for therapies that are not covered by insurance, let alone redoing our home to make it more accessible for Noah. I don't know if there are places that help you financially to readapt your house, or we're simply on our own. I really don't know how that works. This is all so new to me. I would love it though if I could make it something where Noah could have some freedom and potential independence in some way. I don't expect him to learn to walk in a walker overnight. Yet I know I will need to give this some thought.

Noah will probably also need to be re-fitted for sure-steps again, his little feet are growing. I'm glad he doesn't need full AFO's yet, maybe he never will I don't know. It's early to tell. I still dream of him walking, but I keep these dreams guarded, I bounce back from reality to dreaming and back again all at the same time. And really it's all up to Noah, it's how far he wants to go. I can only be his guide, the rest is up to him. I will cheerlead him on, and never ever tell him that there is something he cannot do. My hopes is that this little determined person will reach places no one ever thought he would.

It will take many months to get Noah a walker, Medicaid isn't fast. And equipment doesn't just arrive in a week. We still need to measure Noah and work out all the details. Hopefully by Summer he might have his own walker. We still don't have a pediatric stroller/wheelchair worked out yet. We're constantly trying to give that some thought. And I'm assuming that Medicaid will consider his walker a stander, so I'm assuming we wouldn't be getting a stander for Noah at all. I looked at the Rifton bikes that they make for kids, at first I looked at it thinking Noah will never ride a bike, but his physical therapist thinks that Noah may be able to do it as he gets older he just has to learn to pattern his leg movements. That was encouraging. Sometimes as a mom I think about all the things Noah might miss out on, all the things I would love him to have access to. Of course Medicaid doesn't pay for bikes, but we'll cross that bridge when we get there. Chris and I can only go day by day with getting Noah what he needs. We try so hard to provide for him in all the best ways.

Today we did had therapy and Noah's sensory class. I was a bit worried that sensory class would be an utter disaster considering we've taken a break for the last three weeks due to holidays and that Noah has been struggling a bit more lately in those areas. He had some moments of gagging - an indication he's on overload, and was getting agitated towards the end, until one of the therapists bounced with him on the balls and trampoline. Noah needs that movement often times to re-group and center himself. The kids played with play dough today, but Noah just can't yet. His little hands are so far away from working to play like that. So we watched the other kids build their gadgets and mold their dough.

As I was leaving there was this group of moms that were feverishly making play dates in the hallway. I twinged, I know I shouldn't - sometimes it just happens. Over silly things obviously. I know that no one is ever going to ask Noah for a play date. Noah can't play. He's two and just lays on the floor. Other moms aren't going to invite me over for things, they aren't going to include me in their "reindeer games" and tupperware parties or whatever stay at home moms do. My child is different, so therefore I am different. There are days when I feel that distance growing even bigger. Although I'm so busy tending to Noah because his needs are much like a newborn or infant rather than a toddler, that I tend not to have the time to slow down to really realize how left behind I really am.

Parents can't invite me places, I can't travel with Noah to the Botanical Gardens, to the Colorado Springs Zoo... so after a while the invitations stop, no-one really wants to figure out what you can do, or what Noah could make it to do or what he'd like. I think in a way they hope that you cannot go, then they've done their duty of trying to include you, while still keeping their distance from "the disability". A conscience clearing technique that maybe we all possess to some degree. To say well I tried, even if I didn't really try at all.

Even though Sociology was my major, there is so much to be said that you simply cannot learn from a book. Have a special needs child and realize that's the huge social experiment. Who needs to study which way people tend to stand in an elevator? Or how they react when a stranger sits next to them for a meal... try special needs. There should be a huge book on that. My biggest wish is that people wouldn't be so frightened of it. My life isn't contagious. My child doesn't have a disease, sure people might stare at us, or ask questions, but the only person that should even affect or make uncomfortable would be me, not the person standing next to me.

"Have no fear of robbers or murderers. They are external dangers, petty dangers. We should fear ourselves. Prejudices are the real robbers; vices the real murderers. The great dangers are within us. Why worry about what threatens our heads or purses? Let us think instead of what threatens our souls."
Victor Hugo


Creative Commons License
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Monday, January 10, 2011


Bookmark and Share
Yesterday I was on a quest to find soothing techniques for Noah. I must have sniffed almost every essential oil scent at Sunflower before realizing there were none that were smelling good to me. I felt a bit discouraged, but my mom recommended we go to Vitamin Cottage and see their selection, so we went across the street, and found the perfect combination of lavender and vanilla. I opened it up and thought instantly this is the one. If I liked it, surely little guy might like it. It wasn't overly strong, and I liked the little dabber that it had as a dispenser.

I also found this really interesting therapy tool called the Hot Diggity Dog while I was there. It's an aromatherapy stuffed animal that goes around your neck that is scented with Cinnamon, Eucalyptus and Clove. It can be put in the microwave and warmed up or in the freezer for cooler comfort and can be machined wash and dryed. It also comes in a teddy bear called Buddy Bear, and a cat called Cozy Cat. I'm going to ask his therapists what they think if it might help soothe Noah when he's distraught and is on sensory overload. They are a little pricy, so I want to make sure if I make the investment that it will be something that might really help Noah.

Hopefully this is all just a phase that I can get Noah through. I remember having to bounce and constantly move him as an infant to soothe him, and give him vestibular motion that he needed. I thought those were hard days, and now I've moved into another hard phase. I can't bargin with Noah, I can't negotiate with him to be calm, or coax him with a cookie or a treat. I admit there are days when I just want to cry with him because I don't know what to do, or can't figure it out fast enough. And I wish in everyway it was different for him. I want to make him all better in an instant. I want everything I'm trying and doing to be working. All really all I can do is turn it over to God, so much of it is simply out of my hands.

Granted Noah still needs vestibular motion, which we do in therapy or at home. We still rely heavily upon platform swings and bouncy balls. Still all the while working on head and trunk control, and trying to get him to balance to sit. It's really exhausting sometimes, but I'm so glad Chris is my other half. He participates equally in helping Noah. Even though I'm the one primarily taking him to therapy or am here with his in-home therapists, Chris still comes home after working and helps him play with knobbed puzzles, hold triangular crayons, and work with speech on his Ipad. He spends a large amount of his weekend being my right hand, we take turns doing this dance of taking care of home repairs, therapy with Noah, grocery shopping and finding a way to at least get the laundry done, even if it seems to pile up clean on a bed for days at a time. I don't know how we find a way to make it work some days but we do. It's a marriage filled with love, and we're in perfect harmony of doing what just needs to be done. Each of us rarely complains and if we do, it never has an ounce to do with Noah - it's usually related to economical or insurance circumstances. We always wish that we could change things for the better not only for Noah but for all that are like him.

We're hoping the essential oil that I bought will make a difference, it's still too early to tell if it will have any kind of an impact. I know I can't expect this to get better overnight. But hopefully with time I'll be able to get Noah to work through this. Thank you all for continuing to pray for Noah and our family.


Creative Commons License
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Friday, January 7, 2011

A Special Grandma for Special Needs

Bookmark and Share
Ever since Noah came home from the ER, he's been suffering from on and off again moments of hysterics. Things will set him off that never did before, he's frightened of things he never had been. Between Chris and I we spent over two hours trying to calm and soothe him last night to no avail. He just cried and cried super hard no matter what we did. Listening to the radio didn't help, being held in a different way, being cuddled, we tried both beds his and ours, nothing. We weren't sure if he was sick, he didn't have a fever. But he can't tell me why he's crying and it's distressing. He had a happy day, it was perfect, the first one in days where I didn't have a distraught Noah. Laughed and giggled and was basically himself. We made it to pool therapy and he did great, loved it, and he looked like he was relaxed and enjoying how his body felt. He took a decent nap. Ate great all day. I went over the checklist a million times as to where it went wrong for him at the end of the day.

So as a last resort what do I do? I call my mother because if I don't have the answers surely she will! The second time in weeks I've woken her out of bed, and she doesn't even hesitate she comes right over to help. At 11pm at night here is grandma trying to help her little Noah. She finally is able to comfort him and they both find a spot on the floor and she spends the entire night sleeping and cuddling with him, even though she has to go to work and face a tremendously demanding workload the next day. It takes a really special grandma to love Noah in the way that she does. It's just amazing. I don't know too many people that would love him like she does. She doesn't see a broken little boy, she just sees a soul that she's going to help make his way. Her patience and love for him is incredible. She knows his limitations, how fragile he is, how he needs to eat, what we have to do to make sure he stays healthy. I tried to even get into a program that would pay her for all her efforts in helping us care for Noah and his challenges. But the State said since Noah didn't have a "short life expectancy" that we didn't qualify for the Medicaid Waiver Program. (Just one of many program and service denials we've received). So all I have for now is to pay her dearly in our love and thanks.

We never did figure out what was upsetting Noah. He's fine and chipper this morning like no big deal. Last night he grew upset because we touched is prayer bear and made it recite its nightly song, but usually he loves that bear, then he seen Chris on the phone and that upset him more. He doesn't mind if the phone rings but he doesn't want to actually see you on the phone or know you're having a conversation with someone. Maybe in his mind he thinks we're calling 911 again I don't really know. He always was sensitive with sensory issues, but never this bad until after that emergency room visit.

And I worry as we have some medical appointments scheduled this month, and I really am concerned about his well-being. I'm trying to get him to move forwards, not backwards. I've asked his therapists for advice, and they've been great offering me some sensory techniques to try with dry washcloths, essential oils that might be calming that I'll go hunt this weekend. But the problem with sensory things is they don't go away overnight. This could take me a really long time to get Noah over what is scaring him into these episodes. Chris and I feel that something scares him into these hysterical episodes where you can't calm him down. And I'm not about to drug Noah just because we have some sensory problems and fear issues we need to work on. I will find a organic way of getting him through this. Granted it's hard on Chris and I, but God never told us this was going to be easy. We just have to keep trying until he understands all is safe and well and wonderful.

And at the same time while Noah's auditory and visual sensory issues seem to be on high alert, his sensory issues with touch are much improved. He actually held a swim stick in one hand for a minute and 15 seconds. Not hardly impressive I know in the world of typical children at the age of two, but highly impressive for a Noah that can't even hold a spoon, bottle or feed himself in anyway. He's also allowing me to freely brush his teeth without complaint and gag. Huge in our world or sensory problems. You had to trade one improvement and lose ground on another. Special needs is just challenging. It's truly hard to explain it unless you're living it. I'm so glad I'm not alone. That's been such a comforting part of the last two years. You really do need support to get through some of your days, you do need prayers, you do need those hugs from friends, you do need love from the family that will be there. It's like the energy you feed on to keep going. And even though some like us find there many not be many in their corner, all it takes is just one person that cares. Just one - and you can do this.


Creative Commons License
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Tuesday, January 4, 2011

Sensory Days

Bookmark and Share
Noah started his new year off a little rough. There are just so many overwhelming sensory issues for him. Can't turn on the electric knife without him screaming... the blender often sends him to the moon... his Tickle Me Elmo that I thought he'd love freaks him out. We've been without internet service for several days. And Qwest come at all time unannounced to make more repairs that still have yet to fix it. We only have access for minutes at a time and then are without it for hours and days at a time after that. A service man rang the doorbell yesterday during Noah's nap, I of course still have to snuggle with Noah in our bed for naps, he has not learned to soothe himself enough to take an independent nap. Once the doorbell rang, our loud mouth barking dog, Hollie wouldn't give up, causing Noah to immediately cry. I attempted to tell her to be quiet which made Noah even more upset, because in Noah's world you can't get mad or upset, he's too sensitive for it, and that makes his hysterics worse. So Hollie runs outside and barks, which still is upsetting to Noah while the Qwest service man is yelling at her through the fence to shut up. I put Noah down because I have to do something. I attempt to call my mother because she happened to be off of work, only to find Qwest had disconnected my phone line. I'm scrambling for my phone as I charge out the door to tell Qwest exactly how they've tortured my kid and ruined my day, with their unannounced visit and ask him to reconnect my phones.

Noah of course was still crying and hysterical by the time grandma arrived. We took turns trying to soothe Noah and calm him. He gets so worked up and often time just lacks the ability to self-calm. It's not his fault. This is all part of his neurological damage. His triggers are so sensitive, he just can't help it. You can't offer him a bottle until he calms because he tries to inhale and gasp which is risky for aspiration, you just have to walk with him and hold him and tell him how much you love him until it's over and it could last a long while. I was thankful for the extra set of hands to help Noah through it. I know it was a combination of a very short nap with terrifying noises that set him off. I'm sure it's really hard for Noah to be Noah. He lacks the ability to tell us what is bothering him, he can't run from anything, he's completely dependent.

Well intentioned people tell me that the only way to get Noah past these things if force the exposure of them on him. But that's not the key. A mommy's intuition tells me the opposite. That would be torturing Noah. He will either find a way around them, but I'm not going to purposefully expose him to things that I know will cause him hysterical hour long meltdowns. I'm doing the best I can to fix them, buying anti-barking devices for my big mouth, contemplating disabling the doorbell so that the dogs don't freak... packing Tickle Me Elmo away in a box...

I've always had this tendency to gravitate towards movies that aren't all happy endings and roses. Movies that whether they be fictional or not, have such heart and character you believe that someone could have really lived it. Like Terms of Endearment, Steel Magnolias, Thorn Birds, or the one I re-watched last night Fried Green Tomatoes. People that have such heart still while possessing typical flaws that we all have. In the movie there is a section that always made me cry, even years prior to Noah's birth. Where the character Mrs. Threadgoode, or as I believe is really turns out to be the character Idgie, describes having a special needs child, Albert. The book rather offers a way more detailed description of Albert, and Mrs. Threadgoode's reaction regarding his circumstances. They suggested to her that the child would be a burden. And she replied:
"How could that precious, sweet baby ever be a burden? How could anybody think such a thing? Why from the minute he was born, Albert was the joy of my life. There wasn't a purer soul that ever lived on this earth. And years later when I was feeling a little down, I would just look at Albert. I had to work everyday of my life to be good, and it was just a natural thing for him. He never had an unkind thought. Didn't even know the meaning of the word evil. A lot of people may have been sad to have birth-injured child, but I think the Lord made him like that so he wouldn't suffer. He never knew there were mean people on the earth. He just loved everybody and everybody loved him. I truly believe in my heart he was an angel that God sent down to me, and sometimes I can't wait to get to heaven to see him again."

If only years ago I would know in hindsight that my own birth injured son was in my future. Maybe there was a reason I always connected to that passage and never understood why. I too do not see my child as a burden. As challenging as some of our days may be. He is and always will be my gift. I will remain always humble and thankful to God for sparing him and allowing me to parent him the very best way I know how. I pray everyday that therapy continues to help Noah, that with this unconditional incredible love that I have bursting from my heart for him that it will be enough to carry him his entire life. That he too will not ever see the world in it's most wicked ways. That he will only understand pure love.