Say it with me kids....PER-SEV-ER-ATE

Per·sev·er·ate - to repeat something insistently or redundantly.

My son....that little love of my life has many gifts. Some of those gifts bring a smile to my lips, some make me thrilled beyond words, and and there are those few gifts that make me want to rip my own ears off. :) Spencer has been blessed with the wonderful gift of perseverating. For those of you that don't know what that means....refer to the oxford definition above. My stubborn little man doesn't like to let things go. Sometimes, I believe he doesn't know HOW to let those things go. As a result, he often says things over and over and over and over and over and over and over and over and over and over and over and over and over and over.. Annoyed yet? My point exactly. Prime example....the other day Spencer woke up and by bed time, he had asked to go to Blockbuster Video 67 times!! Yes i actually counted....gave me something else to focus on besides cursing out Blockbuster for its very existence. Perhaps now you understand why i occasionally want to rip my ears off!

The great thing about this journey is that i have learned about a few of my own gifts. I AM a patient person. I can parent in ways that are creative and motivate my kids to do well. I by no means am perfect by any stretch, and goodness knows i have had my occasional stark raving mad parenting moments. I have really learned to shift my thinking, and see the brighter side of these tiny "quirks". I prefer to see it as a boy who is persistent, refusing to give up, standing strong and knowing what he wants. While dealing with this behavior can be a challenge to say the least, it definitely keeps me on my toes and forces me to find really amazing ways of helping Spencer move on from his fixation. I have learned to do crazy dances, have amazing tickle fights, play tag and hide and seek again. All of which, are fantastic strategies for distracting him from his want of the moment. Simply saying no,...or later...does not always work. Given that i am a parent who does not just give in to every whim, these tactics have been blessings for both of us. It doesn't always have to turn into a win lose situation. I don't always have to be the big controlling boss. The other great thing is that it is transferring over to my daughter. I am finding my patience with her as well.

My boy has a long memory, one that retains the tiniest details. He remembers the good, the bad and the ugly. As a result, we need to really protect him from what he sees and hears. He recalls information from months and months ago, remembers directions to far away places after only travelling there one time. He remembers numbers in ways that are astonishing, and can pretty much recall every single house number of every house we have been to. He recalls slogans from commercials ...to the point that we can't drive by Maple Leaf Chicken without those famous words being uttered from the back seat...."Because we care". So, i have learned to smile alot and embrace this little gift. Its one of those amazing things that make my son so amazing.
He is incredibly bright, smart and very intuitive for a boy of five years.

I'm realizing that being the kind of person that sees the glass as "half full" is not so bad. Seeing it as "half empty", only means I am acknowledging all the things that are missing or lacking in one way or another. I can't be of that mindset when it comes to raising my son. I cannot constantly be reminding myself of all the things about him that aren't the same as everyone else. It serves no purpose and will eventually just give him the message that what he has to offer is less than the norm. I NEVER want Spencer to feel "less than"....not ever. I must look at him as having these "added" or "extra" traits, all of which just enhance who he is as a person. Somedays, i literally stare into his eyes and wonder what its like to have some of these abilities. Wonder how his brain works the way it does, and can be so different from another child's. But you know what? Different isn't bad....its just...different. It must be frustrating for him some days. I am sure he would like to let alot of these things go if he could. I KNOW he would. Somedays i wish i could take it for him....use my words to say those things over and over....use my voice to give him a break. The reality is, some days i can see that it makes him tired.

Thankfully we don't have many days where i want to rip my own ears off. He is making improvements....huge gains that make him proud. I dare to even say that he is getting a little more flexible in his thinking. I said a "LITTLE"....not "ALOT". Writing that makes me smile, because i realize that i really don't need to be greedy when it comes to his progress. You learn to love and accept whatever gains you get. My boy....he makes me smile. It makes those tough days worth every single second.....

Patience on four legs...Spencer's friend Chanelle.

I swear Spencer is going to conquer the world at the pace he is going. I remember when our friends Michael and Elizabeth bought this little skinny, neglected pooch from a family who was looking to get rid of her. Cute as can be, but she was pretty pathetic when they got her. With love and care though, Chanelle has turned into one of the sweetest most loving and loyal dogs ever, and has turned out to be something even more. She's my son's friend.

Spencer has always been really interested in dogs, but he has always struggled with a deep fear of them. The way they bark and jump around really made him nervous. I could always tell that he wanted to get close to Chanelle and he would seek her out when Michael and Elizabeth would bring him to the school play ground to pick up the kids. Spencer was always sure to keep a safe distance, but would try desperately to get closer to her each time, trying to hide his fears just so that he could one day pet her. This day came a few months ago, when he finally pet her on the back. It took Spencer 2 years to be brave enough to finally reach this goal. The look of pride and excitement on his face was absolutely huge. Chanelle has always seemed to have the knack of staying calm around Spencer for some reason. This can be out of character for her, as she is a dog that loves attention and gets excited when you pet her or or reach to touch her. With Spencer though, she has always tried to stand very still when he has tried to get close to her....almost like she knew. Strange, I think that little white dog could read the situation and wanted to help my son get over his worries.

A couple of weeks ago, we had dinner at their house, and they made their final big step together. Chanelle carefully jumped up on the chair to sit with Spencer. He was so thrilled, and while he was still scared, he loved that she sat with him and let him rub her back. That dog sat there for a long time, patient and gentle with my scared boy. I find it strange that a little white dog can understand a situation while there are so many adults who just can't even grasp the basics.

So as he gains momentum, I realize more and more that he wants to overcome the fear. He wants to feel proud of himself. He wants to be brave and do things that don't feel as natural to him as they do to other kids. Despite the fact that Spencer struggles to communicate, those big huge eyes often tell a very big story. In those eyes, i can see his fears, see when the stubborn kicks in, see when he is filled with joy and excitement, and when he is absolutely terrified. Thank goodness for those eyes.

So this boy and his new friend have made progress. These successes give me incredible hope for Spencer's bright and happy future. Alot of kid's would just give up. Not my boy. He doesn't like to let anything get the better of him. He will conquer the world, even if it is one four legged creature at a time. :)

For our very patient friend on 4 legs named Chanelle.....thanks for hanging in there and making my boy feel so very pleased with himself!!

Letting go.....

Quick update.......my boy is growing up. Yesterday was a success and we survived the first day of the rest of his life. It turns out, that this new life milestone has alot less to do with my letting Spencer go off into the big bad world than i first thought. Truth be told, yesterday i discovered something. My boy is getting strong enough to let ME go. Something i wasn't completely prepared for. He's ready to try to be a big boy, go off and try some things all by himself. He's wanting to spread his wings, stand strong and be brave without Mama there every step of the way. A degree of sadness lingers there for me when i think about this.

More importantly though, I was sooo proud of him. He marched into the playground drop off area with his head held high, greeted his teacher and then proceeded to kiss me and tell me to go home. So, i stood hiding behind a bush (yeah i know i am pathetic), and watched my son go and take on the world of 5 year olds. He seemed to do just fine. Wow. He really is ready. I know that we will still face many of the worries that I have talked about. I know he will have some bad days. But, his strength and courage will get him over these hurdles.

When i went to pick him up, the best moment was when that door opened. Out came my boy, all smile and kisses and hugs. The teacher reported that he did really well. As we were heading over to the park to play for a bit, I heard the absolute very best thing I could have ever hoped for. A boy and his mother were close by and the boy said to his Mother..."Hey Mom...this is my friend Spencer". Music to my ears!! Of course Spencer then introduces his new friend to me and says...."Hey Mom...dis is my friend Hair". The boy very gently said.."No remember Spencer?....its Harrison". This made me smile. Gotta love kids.

So I survived..........and Spencer thrived. Probably a concept i better get familiar with.

The first day of the rest of his life...

***WARNING***

***If you are seeking a bright pick me up blog today....you might want to search elsewhere.***


Alone. Funny how as parents sometimes that is all we desire. Time alone. Space and hours to just sit, catch our breath, relax and enjoy the quiet. I have been one of those parents who from time to time has needed that space. Enjoying the peace, time to focus on me and just have a break from meeting all the needs of my two kids. There have been times when i have welcomed the silence. Don't get me wrong, i always miss my kids when they are away from me, but i admit there are those times that i have welcomed the rest. Today though, today is different. My baby is going off to school. The first day of the rest of his life.......

This is not the same as preschool. This is a much bigger and scarier world he is about to encounter. Sometimes, i wish i didn't work with kids. I KNOW all too well how kids can be. I know far too much about peer pressure, bullies, negative behavior and rejection. I often wish i didn't know as much as I do. Its incredibly difficult for me to always know what kind of long lasting damage kids can do to one another. The worst part though, is when you have a child who can't even fully express when someone has mistreated him. He can't always put words to his pain, sadness and hurt feelings. That is the part that eats at me. What if i don't know that someone has been mean to him? What if someone makes fun of him, bullies or hurts him and he can't find his words? I recognize and understand logically that all kids go through these things. I am aware that I can't always rescue him. But, when you can't even comfort your child because you have no idea what the issues are......that is heartache at its finest.

Letting go....a concept i am having to become very familiar with. I know its time to let him go. I know I need to empower him to learn to fight some of his battles for himself. He needs to find his way, and i remind myself that I can't control all aspects of the universe. Believe me, this is a reality I face more and more every day. Some days, I think i was given just a touch too much of the Mother Bear instinct. The bear in me wants to tear through the forest, attack any enemies that stand in the way of me and my baby bears. Not only attack them, but chain them to a tree, confine them to caves for all of eternity. Yeah this Mama Bear is a little twisted.

So i worry, wake up at 1am, 2am, then 330 am then 5am....and worry some more. Walking the floor. Funny, up wandering around at these ungodly hours, I am very familiar with all the creaks and sounds that come along with the silence of the night. Night time....its not all bad. The quiet at night has also been my friend from time to time. Its not always the time when i worry and fret, but has been there for me when i have needed to find clarity and come up with a game plan around proceeding with Spencer and finding the best ways to help him. Some of the best decisions I have made have been at 4am while pacing my front hall or sitting at my kitchen table over a cup of coffee. Tired?....yeah i am tired some days.

So, i guess i am blogging my negativity. Getting the fears, frustration and sadness out. Hoping that i can leave it here.....just for a while. I don't want to dread dropping him off at school today. I don't want to walk away from my sweet little boy with his big eyes and sweet smile. I want this to be an exciting time....a time filled with anticipation of amazing things to come. Today, i wish i wasn't coming home to an empty house. I don't want the break from my kids. I don't want to be alone with my thoughts and with my worry. Mostly though, I know this will pass. I know we will get into routine and life will get some level of calm once again. I know Spencer will be ok. I remind myself of his strength, sweetness and ability to persevere. These are his gifts, and they will get him through.

So on my little boy's first day........the first day of the rest of his life, I wish him absolute happiness, adventure and a whole heap load of 5 year old fun. I hope he encounters many friends and few foe. My dream is for him to learn new and exciting ideas and be supported by the adults around him. I hope he laughs till his tummy hurts and listens really well during circle time. I pray his hands will cooperate so he can handle his lunch bag, hold a crayon and unzip his back pack. I hope he will remember how to ask for help....and in turn will be heard and assisted. I hope he makes a friend. One that will accept him for who he is and hang in there even when they don't always understand him. Above all else though, I hope he always knows how much Mama loves him and is thinking about him always.

Good luck today my baby. May it be the very best day ever.

Hey Lady.....wanna give me a hand over here?

So i haven't posted in a while. Some days even trying to find the words can be a chore. Wrapping my mind around the whole school thing, as well as all of the other things that jump up in day to day life have a tendency to keep me hopping. Juggling act.....its alot harder than they make it look in the circus. So while i am still trying to prepare for Spencer heading into class full time as of next week, i still need to manage the day to day. Kennedy being less than thrilled to be in a 4/5 split, managing work, the house....(which by the way looks like a bomb landed in my living room), getting ready to get back into my volunteer work, dealing with my own emotions around so many things going on right now, and finally.......gearing up in case i need to go off to war again.

When i say war, i am referring to the people who are less than supportive...those that stand in the way of my son's ultimate success. He will not have an educational assistant this year....a huge source of stress for me. So i wait.....briefly...preparing myself for the possibility that i may need to find the strength to fight for this. We will see. The funny thing when you deal with professionals, you need to have a well thought out plan. Patience is your friend. You can not act impulsively, and every maneuver must come from a place of logic and not out of gut wrenching emotional reactions. I have found you get much furthur in the battle using these tactics. You need to be armed with knowledge, a certain wisdom and a confidance to stand up for what you believe in. My mind hurts just thinking about it. Thank god my profession has given me some of these gifts.

More reports have come in from various tests, speech therapists and programs he has been involved in. I watch "That" file folder get thicker by the month. "That" file folder....yes thats what i call it. "That" file folder that sits on my fridge reminding me that there is still much work to be done. So much information about such a small boy. Luckily, most of them have been written with a degree of fairness, kindness and sensitivity. Somedays as i sift through the paperwork, i want to take "That" file folder, open my front door and reach out to the nearest stranger walking by. I want to hand them "That" big heavy folder and just simply say "Hey lady, can you give me a hand over here?" I feel less than brave when i have these moments. I just want to ask someone to take all of the information, and come back to me when everything is sorted out, when all the fighting is over, and when Spencer's treatment plans are fully established and running like a well oiled machine. We'll get there....no question about that. Occasionally though, i would love to go back to a time ...a time when the toughest decision i had to make....was what to serve for dinner. When you have a child with special needs, it can be all consuming....the need to do the right thing, make the right choices for your child. To be their voice when they don't have one.

None of this comes without a cost. Sometimes even at a cost to myself. I dont want to think about sacrifices made. Its pointless and tiring. So while all of this is going on, it occurs to me that i need to occasionally put myself first. For the betterment of myself as a mother. I need to remember that i am only human and can't beat myself up for not having all of the answers all of the time. Believe me when i say- I really struggle with this. I need to take care of myself. I need rest....time to regroup and just "be". So over the next while, i intend to take some of that for myself. Not sure how, not sure when, because getting up at 4am to read a book isn't cutting it anymore. (smile)

So while i know i won't be asking random strangers to take over the battles of my life as they relate to my most special and beautiful boy, i do know i need some help from time to time. The great news is....I am aquiring this new skill. Letting people in....the chosen few who get it. They are the blessings in my life that i can lean on and we fight some of these battles together.

The locals know me there......

Finding my happy place.....i spend a whole lot of time there sometimes. I was joking with my good friend Elizabeth all about the very location not too long ago. Bora Bora.....the place my mind travels to when i just need a break. The sunshine, absolute peace and tranquility that seems to exist there. A place where life just seems simpler. I swear somedays i spend so much time there, that the locals know me. They bring me pineapple umbrella drinks while i sun myself with toes dipping into the cool crystal blue waters. Yeah i think i sound crazy...so much detail for a place i have never even seen. A place however, that i will visit one day...that is for certain.

I guess the destination has stuck with me since a friend had shown me pictures from their honeymoon. I like this place, and escape from time to time when i have a few moments of down time. The truth is though, i work to remind myself of all the "happy places" that already exist right here in my own life. So today, i need to stay out of Bora Bora and just focus on the great things.....and there are many.

Here are a few,

The people who have come along in my day and make me laugh and smile, provide support, and challenge me.....for those of you that just "get" me, i am grateful and hopefully you know who you are.

For my girls,.....Kerry, Katie, Elizabeth and Judy. All so different but bring so much to my life. Strong, spirited women who are bright and beautiful.

My family....forever thankful for them. They support me in ways that few people are ever lucky enough to experience. My Mom and Dad, have given me strength by the example they have set for me. I wish every child could be as lucky as i was to know the boundless love and respect they have given me over the years. They truly believe i can move mountains.....and that there is no obstacle that i can not overcome.

My children....and the bright future that lay ahead for them. They can and will accomplish great things.

My job.....working with hard to serve teens, reminds me that i am a good mother, teaches me life lessons every single day. I am thankful for my amazing coworkers, the fun we all have together and for being given the ability to impact the life of a child.

My sense of humour....thank God for that. I am still able to laugh....joke and be silly. I try not to take myself too seriously.

Balance....i work hard to keep some. Focusing on my kids, home life and work. I really work hard to try and maintain who i am as an individual. My interests, spending time with friends, reading are all things that are crucial to my well being. Things i manage to make time for.

For all the "Jackasses" of the world,....yes i am even thankful for you. You teach me how not to live my life, how to be a better and more therapeutic youth worker when dealing with children and to treat others with fairness and dignity. You teach me to think before i speak, and to be patient with others as you never know what hurdles lie in their life path. . So i suppose....even you have your place in my world.

The list could go on and on, but for today, i will appreciate these amazingly important things. Without them, i don't know where i would be. Probably packed up and on a plane to Bora Bora.....for some pineapple drinks and beach chairs. :)

Back to school shopping.......and the heartache that comes along with it.

I know i tend to over analyze. I also know that by nature, i have a tendency to examine things at every angle. For me, its my way of leaving no stone left unturned. "Expect the unexpected?"....I think not. Not a motto that is well suited to my personality or the way i choose to live my life.
I go through all the possibilities, the outcomes both positive and negative when dealing with change. These days, i tend to be completely consumed with being emotionally prepared for my son and this new adventure he is about to embark on.

School........such an exciting time or at least its supposed to be. I remember as a child going back to school shopping with my mom. Vivid, fond memories of all the new experiences to come. As an adult, i have enjoyed the yearly back to school shopping with my daughter. Time together to talk about the exciting months to come....who might be her teacher, who might be in her class as well as having the time to talk about her hopes and dreams for the upcoming year. While i have managed to accomplish this once again with her this year, when it comes to Spencer and his first year in public school.......I literally feel sick. So, with much trepidation, i finally bit the bullet and did the deed. Back to school shopping.....without my boy.
Shopping- an outing that can be draining and stressful for Spencer- so i have done it over the last few evenings on my own. Its dreadfully painful to think that i am sending him off to a new circumstance, another life change that i know he has no full understanding of. He doesn't fully understand that in a few days, his world is about to shift once again. I am not able to help him comprehend that he is not returning to the safe preschool that he loved so much with all the additional supports that he has become so accustomed to. How can i protect him from the sometimes scary reality he is about to face.....more kids, more expectations, less individualized attention and full days without the Mom that has struggled to protect him from all the "mean" people of the world. Unfortunately, my son has to learn through experience in order to fully grasp alot of concepts. Reassuring, comforting and verbally preparing him don't often work with a child who struggles to understand language. Dramatic?....absolutely....i am dramatic. But, speaking our truth nonetheless.

So, as i have shopped for Spencer on my last few trips to all the stores, busy with happy kids and families picking out the latest styles, i am watching and wishing.....yeah i still wish. Unavoidable. I wish this year was different. I wish Spencer knew what to expect, would be guaranteed to have the same fair shake as all the other boys and girls. While standing in those stores looking for clothes for him, i feel the ache in my heart....the heaviness that always comes before change. I found myself picking out clothes for him, holding up a shirt and asking myself so many questions. Like..... "Will he be wearing this when he makes his first friend?", "Will he have these pants on the first time he gets made fun of?", "Will he have these sweat pants on when he is asked to do something, and has no idea what the teacher is saying?"....and finally "Will he have these shoes on when he feels the need to run away because he is afraid or embarrassed?" How absolutely ridiculous to be standing in the boy's section, feeling my eyes welling up. That damn lump in my throat that makes it almost impossible to swallow. Then magically, i found a shirt that said-"Probably the coolest kid you will ever meet". Sometimes messages comes in the strangest ways. Regardless though, I am thankful when they do come. Needless to say....Spencer is now the proud owner of that shirt.

Heavy duty stuff i know. Spencer's Mom can be quite a trip. Sometimes i think i need a vacation from my brain. There is an intensity there, that few people know about. While i know that this is one of the great things that makes me who i am, i am also aware of how tiring it can be. Absolutely exhausting at times. I carry my worries on the inside, and have a tendency to come up for air once i have worked things through. My next goal......to share the worry.

Those that read this will likely hear me writing about Spencer and his school experience over the next few weeks. Spencer will be ok, he is a fighter, and will adjust with time. What is not working well, will be rectified and i shall see to that. He will be treated with patience and kindness. We will get through this change.......and maybe next year.....just maybe, i will be able smile just like all those other families in the stores. Maybe then back to school shopping will just be about creating warm happy memories. Until then....i will keep wishing.

Siblings....that fine line between love and hate.

It's official.....I think my kids want to kill each other. Summer.....a time supposed to be filled with fun times, sun and relaxation. At our house though, i have the good fortune of being able to witness a new episode of WWF right here in my very own living room. In all seriousness though, I know my kids love each other. My son worships my daughter and thinks the sun rises and sets on her existence. My daughter can be protective and kind, sweet and generous with her time and attention when dealing with her little brother. There are those times though, when she really struggles to understand what its like to be Spencer. This is a very heavy load for any sibling of a special needs child to carry. In retrospect, i should have clued in when i brought Spencer home from the hospital and Kennedy said "How long is he staying for anyway?".

I find myself always trying to do the balancing act. Sometimes, i know she feels that he gets more attention. This is unavoidable. The reality is....he DOES need more attention. He requires and incredible amount of my time to accomplish some of the most basic of tasks. I understand why this is frustrating for her, and i am certainly understanding of why this would breed some resentment. Everything has always come very easy for Kennedy. She is incredibly bright, and is usually successful at most things she attempts to conquer. She is stubborn, strong willed, funny and a delight to have in my life. She has never struggled with making friends, and "fits" in wherever she goes. She amazes me with her abilities to be responsible, and has developed leadership qualities far beyond her nine years. She IS a force to be reckoned with....and has already established a clear understanding of what she will and will not tolerate from others. She has the ability to communicate her thoughts and feelings, and has no issue with asserting herself in this area. I absolutely love and adore this about her. She is the other "hero" in my life for all of these reasons.

So, back to the battlefield which is my living room. Huge lessons learned this summer. My kids need a little more space from each other. My daughter is just tired of dealing with her brother. Plain and simply.......she's fed up. Quite frankly, i am pretty sure he is sick of the sight of her too. So, with that said, i find myself looking inward. Reminding myself, that much of these conflicts are just "normal" sibling rivalry issues. Some of them are not. Some of them are completely in relation to Spencer and all the things that come with living with a child who requires extra support.

I remind myself that Kennedy is only 9, and that it is unrealistic to expect any 9 year old to be selfless, compassionate and tolerant all of the time. Children are not just born being patient and kind and selfless. SO while i teach my son all the things he needs to learn to get by in the world, i have had to create a whole other classroom in order to teach my daughter about being supportive and accepting. This is a work in progress.....something that will evolve over time. I find myself trying to structure activities for them, where they will find success and joy together as siblings. I cling to these moments, taking great joy in seeing them laugh and love each other. I hold these memories close to my heart, to get me though those times when i know that they are less than fond of each other.

For Kennedy, i attempt to create our "girl" times. Special time for just her and I. Time when she can talk, reflect and just laugh without us being interrupted by a brother who consistantly takes my attention away. The car......its become my favourite place to spend time with my daughter. Strange.....i know it sounds odd. I have had the best conversations with my daughter while taking a simple drive. On these journeys i have learned many things from my wise and wonderful girl. She has insight into the world, has big ideas about where she is going in life. She is inquisitive and opinionated.....all things i would not discover if i didn't take these special moments with her. I just wish I had more hours in a day sometimes...more hours to capture these special times, as well as to take care of Spencer in a way that will not compromise his progress.

So, I am the Mom of two children. Polar opposites in many ways. The best parts of me combined and all wrapped up in two amazing little people. While they don't always like eachother, deep down i know they do LOVE one another. As i find my way down this path, i continually remind myself how lucky i am, how blessed my life is to have them. I do this, as i know that sometime soon, in the near future, i will need to remember all of these wonderful things....because it won't be long until i hear..............that quiet little voice in the back of my mind that says.....
"Lets get ready to R-u-m-b-l-e!!"


P.S. Oh i forgot to mention, Kennedy and I are having an awesome girls night on September 6th. We are going to see Hilary Duff....7th row floor seats!!! Cannot wait!

The race against the clock...

16 month waiting list for Developmental assessment
14 month waiting list for Psych Assessment
6 weeks Social Skills Speech group
30 minutes of Occupational Therapy
45 Minutes of Speech Therapy
5 minute time outs
25 minutes waiting on the phone for a professional to answer their phone
2 days of telephone tag with the doctor
12 phone calls in a day
3 emails in an hour
4 weeks for waiting for Spencer to be reassessed to see if he is eligible for service...........

Time......its a waiting game. Always waiting for our turn.


So it occurs to me that my life now revolves around a clock. Every moment relies on us waiting on the hands of a clock ticking by until we come one step closer to Spencer meeting all his goals. Funny how years ago, time really had very little meaning to me. Now, everything is measured by deadlines, waiting lists, months, weeks and hours. How absolutely frustrating it is to be at the mercy of someone else's schedule in order to move forward. So we wait.....and we wait.

I try very hard not to get frustrated with watching time fly by, wanting desperately not to let more moments go by while we wait. To be perfectly honest, sometimes i just want to scream. I don't want the the hours and months to roll by while we could be making such huge progress. For those of you that know me, i have a tendency to like to control my universe. Shocking i know! I have had to learn to adjust, shift my thinking and yes even give up some of my control. Waiting for other people to come through for me has brought me to this place. Patience.......yes i have had to work on that. I have had to make the best of an often impossible situation. So while the hours and months fly by, i resort to trying to find my own help for my son. Developing home programming after hours of reading, research, and hit and miss treatments. I take solace however, that i am at least doing SOMETHING when it feels like the rest of the world is doing NOTHING.

In those dark moments, when i am frustrated...i ask myself -"How can they not see how important my son is?" "How come everyone is not jumping through hoops for such a spectacular kid with so much potential?", "How can they all preach about early intervention and then offer nothing?" Again, i re shift my thinking and persevere. Like my son, i will not go quietly. So i regroup, refocus and stay on track, or at least i try to. My greatest desire, is for people to realize that my son is not just another case. He has a beautiful smile, a sweet disposition. I will not have him be forgotten and his issues will not be swept under the rug.

The funny thing is....Spencer teaches me the greatest lessons about the ability to hang in there. He has a knack, a way of "handling" his mother during the height of these stressful times. There have been occasions when i have gotten off the phone or just been preoccupied with filling out the 20th questionnaire, and am left feeling spent and exhausted. My boy...with all of his speech issues, and his struggles with communication, somehow finds it within himself to reach me. He sometimes will say something like "Just gots to be patient Mama". I have no idea how he knows, and for a child who has problems reading social cues, he still has the gift of being able to say just the right thing. Something that most of us struggle with our entire lives. One sincere statement or gesture from Spencer and my pity party comes to an end. I pick myself up and move on. After all, if he can be patient, then who am i to complain?

So while we wait, i am acutely aware of how quickly our lives just fly by. I don't know that i would have ever learned how important it is to live in the moment. Waiting, being patient and watching those moments tick by, will do that for you i guess. Another lesson I have been fortunate enough to aquire on this road...appreciating the gift of time.

How to embrace the gift of a simple insult....

Wow......Spencer is really spreading his wings. His defiant, challenging and oppositional wings at that. Part of me is sitting here with a slight grin on my face, when really i should be appalled and deeply offended. Over the last few months, he has found his rhythm around challenging me on the most basic of expectations. While we stumble over these little bumps in the road, there is some pride there for me that he is becoming strong enough to take a stand. While this does not excuse his behavior and I address each situation accordingly, I am pleased to see that he no longer feels like he always has to have everyone telling him exactly what he needs to do and how he needs to do it. My boy is getting stronger, more independent and yes like his mother, he is becoming a little bull headed.

Today, Spencer was annoyed with me when i would not let him paint the front of the fridge door. I know, i am cruel and unreasonable for thinking this was a slightly inappropriate activity. So, when politely told no, my boy ran upstairs to his room while stomping his feet up every step. (Note to self...Spencer REALLY likes to paint on appliances, and i am sure i will be revisiting this again tomorrow when he tries it again). So after a few minutes of cooling off, i went up to talk with him. The tricky thing is, when you have a child with a severe receptive/expressive language disorder, it can become extremely difficult to talk through issues. We do the best we can and muddle through. It can be very frustrating though when you want your child to understand why something is not safe or acceptable. Usually the reality is, it will take several...and i mean several times of rehashing the same issue until i can get him to understand a rule or expectation.

So, anyway, back to the tale of a mother's rejection. I approached him in his room, and initially he just gave me his very best 5 year old evil stare. Then proceeded to say "Mama you get out of this woom wight now....I no wanna be wif you no moe, I so mad at you". See for most Mom's, this would evoke a combination of anger, frustration and a low blazing fury. For me though, i could have burst with pride. So many words, all linked together to create one hell of an insult. Wow, there was a time when i prayed for him to just say "Mama". Now we have evolved to 22 words of pure power. Amazing, my son is turning into someone that is not a push over. Someone who is standing up for himself, using his voice to express his feelings and is not going to go quietly. Inside i smile when Spencer has these moments, and outside I do the usual Mama thing and tell him that while i am happy he is using his words, he needs to be polite and so on and so forth. Meanwhile in my brain, i count words, look at pronunciation, and sentence structure. One of those things that come along with being the Mom of a child with a language disorder.

I know over the next few years, i will need to be careful to teach him how to cope with his feelings and in turn express them to people who piss him off in a way that is more appropriate.. But, i am grateful to see his strong spirit emerging, and will need to be just as cautious to ensure i don't break him of that. He is developing a sense of pride, a sense of self......something i can totally relate to, and want to support in the healthiest way possible. And to think, i never thought being rejected by your child could feel so good. :)

P.S. As i was about to post this blog, Spencer came up with a rotten wilted dandelion from the yard. He proceeded to hand it to me and give me a kiss on the nose. The great thing about him, he can say sorry when he is wrong....something most adults struggle with on a day to day basis. Gotta just love my boy!

Shoes.....who knew they could be so interesting?

When all of these issues began to surface, and we began the daunting task of seeing one professional after another, I began to realize how uncomfortable people truly are in discussing the whole topic of "special needs". People in my life, as well as many of the doctors and therapists suddenly had difficulty making eye contact with me, avoiding my questions and never really being able to give me a straight answer to my sometimes very direct questions. I quickly realized two things. One being that people don't want to give you a direct answer or opinion, in the event that they may be wrong and don't want to be liable for offering an opinion without all the concrete test results. (Blah blah blah). As a professional in the child welfare field, i get that. Secondly, and most importantly, they don't want to be that one person who is responsible for breaking your heart. They don't want to be the one who made you face up to the fact that your life is about to become very different than the one you had mapped out for yourself.
So, this is where the shoes come in. So many people, so many shoes. I began to notice how often people look down at their shoes when they aren't comfortable helping you find your truth. They shift back and forth, looking down at those oh so interesting shoes. Who knew that shoes could be sooo interesting? Strange, that i was never in a position to notice before.

As we have progressed down this road, and as Spencer is continually assessed for being on the Autism Spectrum, i have learned to accept this about people. Sometimes it is absolutely necessary to pick and choose the battles that you will allow yourself to be hurt and angered by. This just wasn't the one for me. I was wasting an incredible amount of energy wondering why no one would tell me what they really thought. Why were so many people acting like the word "Autism" was something horrible? As a parent, we all know when something is not right. When we follow our gut instincts, we are seldom wrong about the issues our children face. This too is something i have had to learn. To trust in myself as Spencer's Mom. To not be swayed by all the people who would come along and offer hope, then take it away just as quickly. I know Spencer is on the Spectrum....his diagnosis will come. I have accepted that. I embrace who he is every single day. I grieved that his future may be different than what i had hoped for. I quickly realized though, that i was being selfish by even having pre-plotted plans about how I believed his life should unfold. The bottom line is...."he is who he is". Five simple words....words i rely on every day. They get me through some really tough times. He will shift and grow in his own time, he will be stubborn and difficult and make tremendous growth. He will find his strengths, and he will flourish and I will support him as he takes on the world. His special needs will not prevent him from having some control over his own destiny....i will make sure of that.
For all the people in my life who have been straight with me, i am so thankful for them. I asked and they would answer. They treated me with respect and never acted as though my son's issues were a reason to pity us. There have been many who were happy to answer my questions, and deal with me head on. I am grateful for these people for their honesty, for their kindness but most importantly.........for not looking at their shoes.

So here we go....

Where on earth to begin? Probably the beginning is the best place to start. April 18th, 2002- my bouncing baby boy was born. Healthy, strong and big....did i mention BIG? The second little miracle to join our family. I will not go into the long details of where our journey began, as that is a novel in itself. Suffice it to say, that our son had signifigant speech and language issues and was developing some "quirks" that were of concern. I did the usual short period of denial and wanted desperately to believe that he would out grow his issues, or was simply a late bloomer. Do you know how many people told us things like "Albert Einstein didn't talk until he was 5?" As ridiculous as those statements were, I wanted desperately to believe my son was just another brilliant boy who was stubbornly choosing to fool all of us. Funny, the things we will do, when truth is too hard to face.
Thankfully for Spencer , i did not stay in denial for long. I sought out help, and have had to fight for him every single day since then. Countless hours of speech therapy, home therapies, occupational therapy, social skills groups, assessments and specialists appointments. While it has been exhausting, all consuming and downright painful at times, it has been a trip that i would take all over again. He is strong, charming, compassionate and my gift to the rest of the world. He works so hard every single day, to fit in and find his way. Those who have been blessed enough to meet Spencer, have learned many lessons around perserverance, tolerance, and acceptance. I however, have been the fortunate one. I am lucky enough to learn a new lesson every single day, and my mentor comes in the form of a 5 year old boy with bright eyes and a toothless smile. Frankly, i can't think of a better teacher.

So if anyone reads this blog, i hope you can take something from it as the months go by. If noone reads it, thats ok too. This is something for me...to reflect and ponder and find catharsis in. But most importantly, to remember why i need to fight for him, and be thankful for all of the joy that he brings to my life.