Just.Do.It.

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Spontaneous would never be a word used to describe my personality. I was born a planner. Even as a young child I recall feeling driven to have my next move ready to go and the next and the next and so on. Feeling caught off guard or unprepared made me a nervous wreck. As I grew older that need never lessened. It actually increased even more when I became a mommy. My actions and decisions now directly effected another individual. It was my responsibility to be prepared for every possible scenario.

Predictability, routines and schedules not only comforted my babies– especially McK but myself, also. I could count on them. I knew what to expect. No risk for disappointment when you have it all figured out. That was all tested when we started dealing with McK’s health issues. We now live in a world that I describe as “controlled chaos”. Kinda crazy, right? Chaos by nature is not controlled. That’s why it makes sense to me. I can try to mold, shape and guide my life and the lives of my children but I can’t completely control them. Don’t let me fool you though. I still want the control. The desire to have it has not lessened. I just deal with it better. Because I have to.

You can’t be prepared for every possible situation in life that may arise. You are not always the one in control. Fact. Deal with it. That’s the good. That’s the bad of it. I am reminded of that daily. My family is stepping out of our comfort zone today. We are doing something with less than 24 hours of prep and planning. On the fly, so to speak. At least for us. Today the only thing I will be prepared to do is have fun. I will be open to whatever is thrown my way. I will take a risk without the benefit of knowing the outcome. I’ll let ya know how it turns out.

Here. We. Go.

Endless Possibilities

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Summer 2012 can be described as the summer of therapy for us. It will probably be that way next summer. And the summer after that. Because McK did not qualify for ESY (extended school year) through our school  district is has been up to us to get her all the private speech, occupational therapy and physical therapy we could get her. For now, that equals to 4 hours of therapy spread out over a 3 day period of time–2 hours speech, 1 hour physical therapy and 1 hour of occupational therapy. We are in desperate need of additional OT but the therapist she is seeing does not have any additional openings at this time. She is the Autism/Sensory guru of the group and is highly sought after. I have been unable to secure ABA therapy through either a private therapist or group yet. We are on about a dozen waiting lists. The shortest wait is now down to 3 months. Every day I wake up hoping that today will be the day that McK’s name has been magically moved to the top and we get that eagerly anticipated phone call. Regardless, we will take what we can get and be grateful. Yes we will!

The first couple of weeks of therapy were extremely rocky. So much so I didn’t  think I could continue to take her if things didn’t change. Like anything else new or unfamiliar to her McK resisted. It is always that way for her. She needs therapy to help her cope with therapy. So difficult. M and C also come with us along with my mom so we are quite a crew when we arrive. The first couple of weeks I basically had to hand her off kicking and screaming. Not an easy thing for a mamma. She’s crying, I’m crying. M is looking at me with this accusatory glare with tears in her eyes also. At 7 years old she doesn’t have the ability to understand how I can let them take her baby sister away like that. I would give anything to not have to force her to be there. C is visibly upset too. We are shaken by what happens. We continue to hear her cries on and off for the hour. When all is quiet we relax. Tension returns when we hear her in distress. It’s heartbreaking. Temporary is all I can think. This has to be temporary. She will eventually come around and maybe not love it but at least accept it. Accept it enough to go along with what is being asked of her. Smiles and laughter would be too much to ask of her at this point. This is all part of the process.

We have been through this adjustment period before when McK began therapy at our home at 2.5 years old. We also went through this when she began therapy in her special needs preschool program. I didn’t for one moment think this would be any different. She has to be given a chance to bond with her therapists. She has to trust them. She has to like them. If the bond is not formed then the relationship between McK and her therapists, doctors and teachers can never move forward and progress. In the past, she has been unable for whatever reason to bond with a therapist and the sessions were stopped. That’s a frustrating spot to be in but you have to go with your gut as a parent and trust in your child’s behavior or reactions to certain individuals. Eventually…hopefully…you will find the right fit.

McK’s therapy takes place at one office. One stop shopping, if you will, for therapy. Within that office there is success. Within that office there is hope for the future. Change takes place. Everyone there shares a common goal–to help children. Speech and PT are done without me in the room. My presence would be too much of a distraction. OT has a tremendous amount of parent training involved so those sessions I go back with her. Thankfully, I think we have found the right place for McK to be with the right people. Mondays session of speech was tear-free. It made our day…our week…our month. It was a long time coming. I know there will continue to be some difficult days. Wednesday is most challenging because she has two hours back to back of speech then physical therapy. It wipes her out. As a reward we go to one of her favorite places to eat and play. It doesn’t make up for the tears and frustration she experiences while she is there but we have to give her something back for all that she gives.

The therapy is working. That is all that matters. As a parent to an Autistic child, I often feel like my life is out of control. I make decisions every day I wish I did not have to and take actions which in a perfect world I wouldn’t have to take. But, I have to keep the eye on the prize and overlook anything else that might come in between her treatment. Therapy does work. It provides possibilities for families. It’s hard on everyone but her life, our life is better because of the time, energy and knowledge that these qualified therapists and experts are giving her. Through our combined efforts progress IS being made. It may not be at the pace I would like it to be but change is happening. In this case, change is glorious!

Freedom

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Another July 4 has come and gone. The typical ways of celebrating the day are not possible for my family. Cookouts, trips to the lake, fireworks…not gonna happen. These all involve the unfamiliar. They are not part of our routine–McKinlea’s routine. Strange food, unfamiliar surroundings, loud noises, huge crowds, etc. create such insecurity, unease and anxiety for McKinlea because of her sensory issues. It seems that all the ingredients that would make a fabulous 4th are anything but fab for my little girl.

Holidays can be difficult for special needs families because the traditional ways of celebrating have to be either completely thrown out or modified ‘Extreme Makeover’ style to accommodate the needs of your child. You don’t do it by choice but by necessity. Trying to juggle the needs, wants and desires of three kids is a challenge I face every day. I can’t make all three of them happy at the exact same time. It seems by giving one what he or she needs I somehow compromise the happiness of one of my other children. That is why holidays are so stressful. I want Mia and Collin to experience all the joy and excitement that comes with these special times. I want their little memory banks to be full of smile-inducing moments from their childhood. I want them to recall all the things they were able to do and not the things they missed out on. I want them to be able to take part in and participate in whatever they would like to do within reason. But—big BUT–we can’t do it to the detriment of McKinlea’s security, comfort and happiness.

I spent the day thinking about freedom. Not really in relation to the actual holiday itself but about the term freedom in general. Freedom has so many meanings. What is freeing to one might be binding to another. In order to give one person the ability to exercise their freedom you might be taking away the ability for another person to exercise theirs. For me, this is my greatest obstacle to overcome each day as a mommy to a daughter with Autism. There are many, many times where equality does not automatically come into play. It’s just not that simple. Especially when you are dealing with a child who doesn’t understand the concept itself. It’s impossible to be fair. It is not acceptable to take away the rights of one to support the rights of others. Who’s happiness is worth more? Who should lose in order for another to gain? Who is the one to compromise? What is the answer?!?

As parents we make adjustments. We relentlessly accommodate. We eventually give in. Someone gets their way. We frantically scrap Plan A for Plan B or Plan C. It’s not about us. It can’t be. For now we bend like trees in the wind. Succumbing to the force for the moment and hoping there will be calm sooner than later. Hopefully, we will not be forced to bend so much that we break.

These three create fireworks for me every day–explosive, take-your-breath away, colorful fireworks –each in their own way

May Moments

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May 2012 was a big month for us. Lots of memories were made, and many milestones were reached. We also had some sadness because we said goodbye to the girls wonderful teachers. Each is moving on to inspire and motivate children in a different setting. They each gave their all to bring out the best in my children. McKinlea’s teacher will forever hold a special place in my heart because she was the first person outside of a family member for McKinlea to bond with.

I have included lots of pictures in this post. I haven’t posted many pictures lately but felt that these pictures tell a better story than I ever could.

Awards~Each of the girls received awards at the end of the year for their accomplishments. Mia received a reading award. She has worked extremely hard all year and has developed a deep love for reading. Her favorite right now is the Junie B. Jones series. I am so happy she and I can share a love of books together. I can’t believe she is going to be in 2nd grade next year!

McKinlea has accomplished so much this year. School is exhausting for her. She would come home each day just worn out. Her day was from 8-12:00 Monday through Friday. At the beginning of the year I worried that she would even be able to make it an hour. She had never been away from me. Never had to rely on anyone but my husband or I and a few family members for anything. Gaining McKinlea’s trust is a big deal. She loves school and was so excited to go each morning. I know she misses it very much.

Sad this is the only usable picture I had of Mia with her award. Nervousness about performing in front of an audience brought out the tears after she received her award.

Miss McKinlea’s award–so cute!

Moving and grooving to her favorite song

Cathy’s Critters~Cathy’s Critters is a mobile petting zoo that came out to visit McKinlea’s PPCD class. They brought out baby goats, rabbits, guinea pigs, chickens, ducks and ponies. McKinlea was in heaven! She absolutely fell in love with all the animals but one in a particular became her best bud, a duck. McKinlea has always been very interested in anything to do with farms, farm animals, etc. She knows all the names and the sounds they make. She had the best time ever and the only issue was when it was time for her class to leave the animals. Heartbroken is the only way to describe it. Getting her to interact with her classmates has been a struggle but she somehow is able to relate to animals.

To find out more about Cathy and her critters visit the Cathy’s Critters website.

Oh hello, Duck!

How are you, Duck?

Can I join you, Duck?

Baby Alpacas–McKinlea thought they were giraffes

McKinlea loved petting the rabbits

Such a sweet little calf

Looks like equine therapy might be an option.

Field Day~ All my children are active so Field Day at school is probably the best day ever in their minds. Collin was able to come and participate, too.

Collin and Mia–two most competitive kiddos…EVER!

Having a blast

So happy

Playing with the flags for the flag football game–not necessarily the intended use but whatever

What a marvelous May it was!


Simply the Best

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On July 18, 2005 our first daughter was born and my husband realized his true calling. To be a dad. Not just any kind of dad. The dad. The dad he did not have. The dad any child would be lucky to have. The dad other men would aspire to be. The dad that I wanted so much for my children to have.

My husband is everything to all of us. We are all so fortunate to have him as our rock and guiding force. He is the support to our family structure and tries to  ensure our foundation stays strong. Our children will not fully understand the depth of his devotion, dedication and determination to keep his family happy until they become parents themselves.

Special needs dads really take on a lot without the attention and support they also need. They are right there alongside the moms battling for their kids, providing encouragement, celebrating success’ and sharing in the stress. Their quiet strength goes unnoticed and many times unrecognized.

My dad passed away from cancer just weeks before Mia was born. He was never able to experience the joy of being a grandpa. He would have loved it! Each year there is a sadness that comes when Father’s Day rolls around. I wish so much he had been able to see B in action. He would be proud. So proud.

We love you B, and couldn’t ask for anything more! You are simply the best!

Inspiration

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This week I was surprised to find out a fellow mommy-blogger at Everything Under the Sun nominated me for “the very inspirational blogger award”. What a treat! The words of encouragement, support and virtual hugs she has thrown my way are very much appreciated! Thank you so much for hearing me!

When I began this blog in January I had no idea what it would inevitably turn into–a platform to raise awareness for Autism and the issues that affect families with Autistic children. I have found a wonderfully supportive community of individuals that share many of the same struggles and deal with the same issues my family faces.

The rules for receiving “the very inspiring blogger award” are tell seven random things about yourself, thank the person who has awarded you for this award by linking back to them and pass the award over to other bloggers and let them know you’ve awarded them.

7 Random Things About Me…Ready. Set. Go!

1. I eat a handful bagful of Haribo Gold Gummie Bears every day.

2. My secret dream is to own a children’s bookstore/coffee bar with a play area. Guess the secret is out now.

3. I’m a self-described Pinterest addict

4. I grind my teeth at night–Yes, I know it is terrible. My poor husband!

5. Most of the TV or movies I watch is done on my iPad.

6. One of my favorite things to do is watch baseball with my husband–Go  Rangers!!!

7. My last meal would consist of cheeseburger, fries and a chocolate milkshake. I’m a pretty simple girl.

Now here is a list of fellow bloggers that inspire me:

1. a diary of a mom–because it is a sense of community that makes the good times sweeter for the sharing and the hard times more bearable for knowing that we’re not alone.

2. It’s a Wunderful Life–Life with Twins and Autism from a Dad’s Perspective

3. Between Hope and a Hard Place–Lisa is a stay-at-home mom, who does anything but stay at home. She acts as the main events planner and chauffeur for her three sons and partner-in-crime, Hubz. In addition to being the head of the household in most ways, she finds time to advocate for her children and their needs, and often finds herself stuck between hope and a hard place.

4. Grouchy Muffin–Hilarious take on motherhood

5. everything is a thing–One crazy mom’s perspective on autism and parenting

6. Autismum–Informative, honest and funny mom writing about her precious son

7. Solodialogue–My life as a lawyer and mom of a 6 year old with autism..

They make me laugh, cry, think and question. They inspire me to hopefully do that for others also. Please take the time to visit their blogs. You won’t regret it.

Hopes and Dreams

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I feel like I have to address my last post  Meltdown in order to move forward. That post was written obviously on a down day. What a doozy it was. Those feelings are the ones that surface when I succumb to the negativity that seems to try to pull me down so much. Most of the time I can push it away but this was a time where I just couldn’t deny the feelings. I was tired. I was weak. That is when I too have my moments. I will go into greater detail in a post to come on what occurred that brought me to that point. I greatly appreciate all the kind words of encouragement and concern that were shown after I posted. I am fine. Just a bad day. Moving on.

When I was pregnant with McKinlea I painted two canvases for her room–one said HOPE and the other one DREAM. This was my second baby girl–I was full of all those girly, giddy, gleeful feelings that mommies have for their daughters. I envisioned another precious angel that would grace the world with pink and purple, showering those around her with her smile. Hopes were high. Dreams were plentiful. Later events would make these two words almost a mantra for our family but in a different way than we ever imagined.

I have glanced at these canvases hundreds of times over the last 4 years. Until this weekend, while up in McKinlea’s room putting up laundry, I had forgotten how I felt when I painted them. There were no doubts that this unborn little girl would be any different than Mia. She would have all the same opportunities, choices and options for whatever life she chose to lead. Why would I think anything else?

The possibilities for McKinlea’s life would be endless. She would have the option of choosing whatever path looked best to her. Whenever McKinlea was diagnosed with Autism I felt like all that had been wiped away. Taken away. Ripped away. I immediately began to panic about the future. Her future. Our future. I wasn’t thinking about the present. We had been living with Autism, although not diagnosed, for years. We were dealing with it already in our own ways. We made the necessary adjustments in order to make things work. After the diagnosis comes in you lose that last bit of hope that it is anything but THE BIG A. You are forced to think about nothing but your child’s future because the therapies, treatments, evaluations, tests, etc. are all critical to hopefully building a bigger, brighter and more fulfilling future for your child. Whatever their potential is you want them to reach it. You know how hard they have to work to achieve success and would give anything to make sure it happens. It becomes a mission.

We were able to finally get McKinlea into a Developmental Pediatrician. ABA (Applied Behavior Analysis) therapy, Occupational Therapy, Physical Therapy and Speech Therapy were all prescribed. She has already had the speech evaluation, and we will be going for the OT and PT evaluation next week. As far as the ABA goes–wait listed. Could be as long as a year to get into a program so I am looking into private therapists. Once again I am being told there are too many children who need help and not enough therapists. I have decided that instead of staying in a constant state of anger and frustration about it, I allow myself a small amount of venting then use those feelings to motivate me to press on. Eventually we will get all the therapy in place. Might not be in the time frame I would like it to be but it will happen when it happens. The appointment with her neurologist went great. The EEG did not show anything abnormal, and there had been no changes since the last one.  Awesome!!! The meeting with the genetic counselor really didn’t provide any more information in regard to the Chromosome 12 abnormality she carries. The Chromosomal Array test that was done is relatively new so the only thing we can do to find out more is for Bryan and I to be tested also. Not good. Not really bad. We did find out though this abnormality is now being found more commonly in Autistic girls.

I now look to these canvases as a reminder. A reminder to be the person I want to be, and the person my children would aspire to be. A reminder to be a more glass half-full than empty kind of person. A reminder to be the person that spreads light and love instead of doom and gloom.

Hope does float, and dreams may need to be adjusted in order to come true. I am working each and every day to be okay with this. Getting there. Little by little. Sooner than later. Hopefully.

Meltdown

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I have quite a few posts  in progress right now that I should be working on but I had to shelf those for a little bit longer to get some feelings off my chest. Feelings that I am usually able to keep under wraps but were brought out into the open by an eruption…a meltdown. A meltdown of nuclear proportion to be more exact. External for McKinlea and internal for me.

I’m no stranger to kid meltdowns. I spent years around children in a classroom setting as a teacher before I had children of my own. Flip-outs, freak-outs, tantrums, meltdowns and any other word or phrase you could use to describe the out of control behavior a child is displaying are not unusual. However, I wasn’t in any way prepared for the meltdowns we would experience with McKinlea.

McKinlea’s limited ability to communicate creates so many barriers–barriers to a life for both us as a family and the life I so much want for her to have.  A life where she asks and receives. A life where she can say how she feels and someone will validate those feelings. A life where she feels that change can be good. A life where security comes from a hug instead of a familiar routine. A life of living instead of enduring.

In your control or out of our control it doesn’t matter. You cannot prepare for every scenario or situation in life. Just can’t happen. I exhaust myself trying to figure out what possible triggers could set her off. There is no negotiating, bartering or bribing. Rationalizing is not a choice. Unless you deal with that on a daily basis there is no way to understand what is is like. It. Is. Exhausting.

The fuse has been lit and the countdown to the explosion is coming. My precious little girl literally starts wilting like a flower. Her body just closes in on itself. I can only imagine what is going on in her mind since she can’t talk to me about what she is feeling. I am telling her she is okay but on the inside I know she is not. She doesn’t feel okay. I am telling her to calm down. She can’t calm down. This is really not for her. It’s for me. These affirmations seem to be the only way I can keep myself from collapsing. Not physically but mentally. I feel defeated. Autism wins again.

I just want it to stop. I know she does too.

Stay Tuned

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My husband texted me out of the blue this morning asking why I hadn’t posted lately. Good question. I instantly became defensive and felt like a slacker even though I know it wasn’t his intent. He missed my posts. Sweet isn’t he? ! I don’t really have a good reason excuse other than this month has just been crazy–doctor’s appointments, evaluations, meetings, ARDs, end of school year activities and now three kiddos home full-time for the Summer. My goal was to post a minimum of once a week when I started this blog, and I was able to meet that goal until a few weeks ago. Life happens and there is no pause button. I have so much to communicate I don’t know where to begin. Ever feel that way? Each time I sit down to put something together I struggle to organize my thoughts clearly. I don’t want to write one massive post so I will stay true to my original intent for this blog, to chronicle our lives, and take the time to create a meaningful post for each event. Thanks B for putting me back on track.

More to come soon. Promise.

Better Than Expected

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The morning of McKinlea’s EEG started bright and early with a wake-up call at 5:00 AM. Surprisingly energetic she hopped out of bed but then paused momentarily to look outside her window at the darkness. She knew something was up. She looked at me for a brief moment then bound out of her room heading downstairs to the first stop on her morning tour-the fridge for chocolate milk. I hustled through the typical morning routines with a little more pep in my step and a nervousness in my stomach which I knew would not go away until the EEG was over and done with. Bryan and Collin departed to get Mia to school, and McKinlea and I headed to the hospital. I was prepared for the worst but hoping for the best.

Being at a children’s hospital differs greatly than a typical hospital. Obviously the decor, furniture, etc. is geared towards pleasing a younger audience but there is also a different vibe. Regardless of what your child is specifically there for; if you are there then something is wrong. It’s that simple. In that setting we are among families that share similar struggles. You exchange knowing glances and hopeful smiles. Parents are armed with all the goodies they could possibly gather to hopefully keep their kids distracted from the reasons they are there and busy enough to buy some time to fill out paperwork or answer necessary questions. Keeping busy is key-for both kids and parents. Waiting to hear your child’s name be called brings about a mixture of both anticipation and anxiety. You are ready to get it over with but nervous about having it begin. But as we all know you must have a beginning before you can have an ending.

The minute McKinlea heard her name the meltdown began. She knows the drill. This wasn’t her first rodeo. Just trying to keep her calm while I spoke to the nurse caused me to break into a sweat. That’s pretty difficult to do in a hospital setting considering they keep their thermostat around a cool 68 degrees it seems. The nurse being the pro that she is knew there was no way McKinlea was going to cooperate enough for her to get all the electrodes on her head to begin the test. She excused herself from the room for a minute and brought back a Papoose Board. It is a device used to safely keep a person, usually a child, immobilized during medical procedures. It is a flat board with wide fabric straps that basically swaddle the child. Once we got McKinlea in it she quickly calmed down and was happy as a lark. She loved it! I turned on Olivia episode on her iPod and within 5 minutes she was completely lights out. The nurse had not even finished putting the electrodes on. Totally. Blown. Away. With the hard part over, the nurse left to monitor the test from another room, and I settled in on a couch to drink my coffee and distract myself with Pinterest.

Sitting in the dark as McKinlea slept I watched the monitor showing her brain wave activity. Lots of red and blue squiggly lines . I had no clue if what I was looking at was normal or abnormal. The nurse wanted at least 30 minutes of continuous sleep then we would wake her up to begin the next part of the test. This is when they turned on a strobe light to see if they could induce a seizure. Five minutes of disco lights done and no seizure so I begin my internal happy dance that we were DONE. YES!!!

We will find out the results of the EEG tomorrow, and will also be meeting with a genetic counselor to discuss the genetic testing results. The trip to the hospital reminded me that things could always be better but things could always be worse. You just have to focus on where you are at and where you want to go. I will try my best to keep this in mind tomorrow regardless of what we learn.