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.