Being Complacent

Being Complacent vs Being Inspired

Several weeks ago in church our Pastor urged us not to be complacent in life- his words were insightful and stayed with me far beyond the hour attention it required. I started recognizing areas that I had become routine with my spiritually as well as a mom, wife, daughter and friend. Although I did not make huge changes I tried to be aware of how complacency could be a downfall of mine if I let it.

You see when you have a child with special needs especially a child with Autism your routines are what save you. You go thru very predictable steps each day so that they know what to expect and to help you manage whatever protocols you are in the midst of.  Routines have saved us from terrible tantrums over the years and kept me on schedule with supplements and medicines. But complacently is born from routines.

When we started this journey, I was an addict to new found knowledge, I wanted to learn it all and implement everything. With each gain we made, I wanted to add more knowledge and more to our protocols for Lindsey. Somewhere along the way learning, implementing and studying became replaced with documenting and celebrating. We were thrilled to have had the initial huge gains and were quite happy to see the slower abilities come into focus. The pace slowed but our satisfaction and pride in new found abilities made me very complacent in pursuing more.

This weekend I had the opportunity to go to a TACA conference. It was very exciting to attend, many of the doctors presenting are doctors I had read about and followed, the information washed over me as a wave of enthusiasm. I felt energized and encouraged. Some of the new research is beyond fantastic, there are new correlations and ideas, things that can change the course of many of our kids lives.

All of our kids’ journeys are different and as I have said before- what works for one child may or may not for another. We are all at different points in recovery and some steps may feel huge but the reward could very well be worth it.  

My inspiration for writing today is simply to encourage you all to try to step away from the complacency that comes too easily to us and find some new challenges, find something else to try to investigate and to be excited by. Our kids recovery and every time they learn something new is the most amazing reward- don’t cheat yourselves or them out of finding new levels of success together.

I realized this weekend that I needed this conference to inspire me to do more, I had rested on a protocol that has been working rather than adding to it. Lindsey has made wonderful gains and I hope to relay in the near future even more exciting accomplishments.

When inspiration strikes

 

Those of you that follow this blog or have read my tidbits may have noticed that I don’t write consistently I write in surges of inspiration. I try to limit my stories to things that may bring value to others rather than simply use this platform as a diary. Last Sunday, as I sat in Church inspiration hit me over the head, as a matter of fact, I envisioned writing this post. I thought about what details I would include and what I would leave out, I had to remind myself to actually listen to the sermon that coincidentally was the same message in many ways as what I wanted to write about.  

The sermon was inclusiveness aimed to point out the value of being with other Christians and how when 2 or more are together in God’s name a church is formed. In many ways, this was deep in context for me I understood the principle and enjoyed the message but on a very different level I understood what isolation can feel like. I am in the unique situation of having a neuro typical child and one who isn’t. This means I have seen the perks of how easy it is to have your child included in traditional childhood experiences and not included, this varies from birthday invitations to if your kids have playdates or not, to quite frankly if they have friends or not. But that isolation doesn’t always stop with them, it extends to the parent. We are fortunate, we have wonderful friends and family that really will never know how much they shrink that gap, but trust me the gap is there. When you go ANYWHERE and someone doesn’t know your story, there are glances, comments, confusion and aggravation for strangers when a situation isn’t perfectly “normal”.

We take all of this in stride, I do not expect the world to change for us or my daughter, I do not hold what people don’t know against them, but on the flip side I started to wonder how I could be more proactive with folks that I knew must feel isolated. I have become quite familiar with the signs of Autism, on some days I feel like a Doctor able to diagnose kids even if their parents are unaware- BUT I am not a doctor, I cannot diagnose all I have is an opinion and depending on how it is interpreted it can likely be felt as judgement.

So as I sit in church, on this day the back row, a man and his son sat down next to me and Matt. The boy was Lindsey’s age and was eager to take his shoes off the moment his rear end hit the seat, his dad without saying a word slipped his off in what appeared to be very much and action of solidarity. This may be something that people do in some churches, it is not familiar to me. I am familiar with how Autistic kids often can feel uncomfortable in their own skin, much less clothing, socks or shoes. So, I took note and was happy to greet them when the time came. Nothing more than “Good Morning” was said but these two had captured my attention. They didn’t do anything outrageous, the boy squirmed in his seat some, the dad would simply hug or embrace him when he seemed restless, from time to time the boy who was closely listening to the sermon would answer some of our pastor’s questions out loud, or make conversation about it to his dad in a similar conversational skill level that Lindsey has. I couldn’t rock this feeling that this kid sitting 2 seats down from me has AUTISM. He was definitely higher functioning, but the dad knew exactly how to tend to him and make this experience as “typical” as possible. Obviously, I don’t know for sure this child has any diagnosis, he may not, but my 6^th sense told me this family seemed to have a very similar story to us.

Now came the hard part, do I say anything at the end of service? Our preacher just explained how important inclusion was? Would it be beneficial for me to find a way to strike up a conversation? Or would it be hurtful to them in some way that I noticed the differences even after all the effort? Or even worse what if they haven’t had “our story” at all what if I have misread all the clues and am flat out wrong, they may find that insulting. So, I sat there and when it was time to go I started to follow Matt down the aisle, but turned back to the dad and said “You know he really did quite well sitting thru the whole service, have a great week”. Somehow, I landed on simply giving a complement, regardless of if he was “neuro-typical” or not, he was good, and his dad had done everything to help him enjoy the service.        

I think I was compelled to share this story because this is something I really struggle with, I want to be helpful to anyone I can but how to help, or how to start a conversation is something I still don’t always know the answer to. I like where I landed on Sunday with simply offering a complement, I think I will try to do that more. After all is said and done every parent likes having their child complemented, and you never know if that one sentence is what that one person on that one day needed to hear to feel included.

Don’t let your thoughts, suspensions, or the unknown paralyze you, I think the worst thing I could have done last Sunday would have been to leave without saying good bye. I would have kicked myself for days for not trying to have said something but being kind hurts no one and I hope that if his sons story and Lindsey’s are similar that that dad left feeling even more proud of how well he had done and that I noticed what a good dad he was too.  I also hope that the next time you see someone and feel like you “know” or that you can sympathize with a situation that you have the confidence to find something to complement for that parent, neuro-typical or not we as parents can always use uplifting words!

Everyday Struggle, Everyday Success: Extreme Parenting

I often find myself going thru the daily motions of getting the kids up, out the door and to school, then communicating their needs with teachers, therapists and coaches prior to picking them up, shuffling them to activities and having dinner, then its showers, bath time, medicine, brushing teeth and bed time prayers. This is the very same as most parents, we all have busy routines and hectic responsibilities- it’s the smiles and laughter, the memories made that push us forward. I know that my days may consist of a few more conversations or a bit more planning, but that’s life. I don’t ever focus on the added responsibility of caring for a special needs child- until I do.
 

 I recently found myself so frustrated with my husband for asking the most innocent of questions about Lindsey. I had to take a moment and self-diagnose, “why was I so annoyed?” “Why did this question strike a nerve?” After sitting in the quiet of the house once the kids were asleep I realized that being the champion for Lindsey does indeed take a toll. I have to be the expert on her, I keep all of her abilities, her challenges locked in my mind. I am not only the keeper of her secrets but also the solutions. I know her medical history, therapy history, academic abilities, social success’ and friendships.  I am the one that studies new pursuits, new medical interventions and has candid conversations with other parents in an effort to better her world. I am grateful to be her champion, I am thrilled that God trusted me with her development and I am rewarded with her love. But that doesn’t mean that it’s not hard. I am going on pure faith most days that the elements we have added are the best solutions, that the advice we have sought is the wisest and that her trajectory is aimed for success.
 

 While my husband is an amazing pillar of strength to me and gives us his unconditional support in everything Lindsey- I realized that I was annoyed that night because it was a question I simply couldn’t answer. I didn’t keep all the solutions to why Lindsey does what she does or how to correct it. I was annoyed because it was obvious that even after all this time and all the progress there is still more to be done, and mostly because I don’t know where to find all the answers. It’s tough when all you want is to help and you know in your soul that you simply don’t have all the tools you want to have. We all want to guide and protect our children, we want to steer them to leading exceptional lives, but how do you do that when you don’t know why a child suddenly screams or is crying hysterically for no obvious reason, how do you explain to others how to handle a situation when you are blind to why it’s happening. Ultimately, these are moments, they pass and fortunately they happen less and less but they still make you question why as their mother you can’t “fix it”.
 

 This post is an effort to give all parents especially special needs parents’ permission to feel overwhelmed, it’s ok to be frustrated; it’s ok to not yet know all the answers to your child. It is unrealistic to think you will ever hold all of the keys, so appreciate the moment when you do have the insight and enjoy the good moments. Those precious good moments when your child looks at you and without words lets you know that you are a super hero to them. The best part of being a special needs parent is learning to appreciate the little moments, the sweet silent smile when they are victorious at a task or the joy they have when they communicate a desire and you are the only one who “hears” them. Savor each milestone and know that in large part it’s happening because you are supporting them with all your love and ability.     

 

 

 

You must stay vigilant.

You must stay vigilant.

It never ceases to amaze me that as much as I learn there is more to learn and that as much as I have experienced there are still new experiences and most importantly after all the battles there are still new hurtles to champion.

Lindsey started a new school this year, we feel confident that this new school will unlock new opportunities and experiences for her to grow. It wasn’t easy walking away from a loving and supporting environment – but growth comes from pushing yourself forward not standing still. I naively believed that she would integrate with minimal issues, after all she has come so far. I took steps in advance to make introductions over the summer, I wrote a 7 page guide to Lindsey including: random facts, diet, behavior, education, special accommodations and more, I packed a box of food friendly treats that she could tap into if the class was partaking in something she couldn’t have. I spoke at length with teachers trying to be the voice that Lindsey doesn’t always use. Still last week it became clear we needed “a meeting”.

I instantly had flashbacks- I remembered meetings of our past where I left in tears, I remembered meetings that proved her teachers loved her and I remembered that this could be an opportunity to help Lindsey be more successful. So I took a deep breath and strapped on my years of IEP meeting armor and met a team of ladies that all had something to say about Lindsey.

For those of you that have not yet experienced an IEP style meeting- let me paint a picture for you. A school representative is at the table (sometimes the principal), the Therapist (speech, OT, PT, behavior and most of the time all of them at once), the Teacher and someone from the school recording notes. Everyone sits around a large table and if you are doing the math that usually means you are sitting across from 4 to 8 industry professionals that have developed a strategy that they want to present to you. It is easy to feel overwhelmed, it is easy to feel intimidated. But there is one thing you should ALWAYS remember – they do not know your child the way you do and you are the final authority on whatever changes take place.

Don’t let them convince you that they know that childs abilities better than you, they may have strategies but you have years of being their mother or father- you are the one who wakes with them in the middle of the night , you are the one that watches their every move when meeting a new friend or stranger thinking about how far they have come and worrying about what they may do next, you are the one that cares for them when they are sick or scrape their knee, you pray for them, you research for them , you provide for them and you love them. They – the professionals at the table- will never know your baby like you do. I am a big proponent of following your gut, this is the time to do just that. Some of these folks will love your child and will only be looking for ways to help. Others will be trying to convince you that they have issues and lean on you for solutions. It’s all about balance. I often say a prayer before these meetings – I pray that “I hear the words that need to be heard and that I say the words that need to be said”. Often your feelings can be hurt, you don’t know that they care enough and you stop listening- Don’t. It is possible to not stand up for what you know is right in an effort to be polite- Don’t. Take a moment at this meeting and collect yourself. Take the good, the bad and the “in-between stuff” and apply it to helping your child. Be their voice – they need you.

So even me, a veteran at meetings for Lindsey, had to take my own advice. I had to stop my frustration- I had plenty, and listen. I had to hold my tongue a couple times because those words wouldn’t have served us well and think about what words could be productive. Ultimately, I walked away a little tired, a little emotional but very much pleased with achieving a game plan that would help my daughter in her new environment. After all is said and done the result is always worth the meeting. It is your ultimate opportunity to talk to all those that work with your child, know what they are experiencing and for everyone to have a clear path to success.

 

New schools can be tough, new teachers can be tough and I imagine for many of you simply a new school year can be tough. No matter how much we prepare we are still going to have new adventures, new obstacles and new victories. Surround yourself with those that support you, allow yourself to take a break from life every now and again – simply enjoy your family when you can and know that you can make a difference in your child’s life, they can be their very best with you by their side and with God leading the way.         

Oh yeah… I have another child too! (the balancing act)

Oh yeah… I have another child too!

I have often said that Jackson was meant to be Lindsey’s big brother, as each day passes I believe this more and more. I am the proud recipient of complements by strangers and friends alike of kindness, big heartedness, and thoughtfulness displayed by this special boy. He proves to be a true gift from God, not only to her but to me and his dad as well. Jackson has taught us what pure love is. We are constantly surprised by the maturity that can be displayed in everyday actions by an 8yr old. Don’t get me wrong, he is also mischievous and silly, inquisitive and exhausting and quite talkative- BUT it pales in comparison to his ability to care for his little sister.

So as you can imagine he is a great deal of help both around the house and when we are out and about. He also knows life isn’t “fair” there is plenty he can do that she cannot, and he is aware that there are times she is allowed or even rewarded for things that he is not. This is where being a good parent gets tricky! Keep in mind I have two children, Jackson and Lindsey- and no handbook. These two kids are so different; they have different personalities, interests and abilities. They hit milestones at different times, they learn different and react different to rewards and punishment. So my constant challenge is to raise them based on who they are, what they understand and what their abilities are in a way that creates harmony and joy. (Challenge may have been an understatement.)

I find myself researching things for Lindsey, devoting myself to her ever-changing needs and me becoming the subject matter expert of the hour, day or week that a new issue appears. I know that I don’t spend equal time thinking about my kids and that’s tough. In a perfect world I would be able to balance them perfectly, unfortunately the reality is that I have guilt over this and spend many late night hours trying to figure out how to be a better mom tomorrow. I go to bed worried that I didn’t pay enough attention to the 225^th story about a cartoon Jackson watched or why a video game guy was “soo cool” because I was busy asking (begging) Lindsey to repeat something so that I could have that glimpse into her world. Or on the really bad nights I worry because I needed them both to go play in another room so I could keep reading the most recent article on helping Lindsey recover and I missed all the stories and comments of the night. Nights are filled with me challenging myself to be better and thanking God for the day I had, always asking for just one more.

When mornings come we jump into routine and I try my best to be a part of the moment, I try to appreciate the sound of Jackson’s age 8 voice and the mysteries the world holds for him with his inquisitiveness. I try to tune out everything else and focus on Lindsey, her world and her gains on how well she is communicating. I often get caught back in the trap of the “real world”, chores, errands, work, dinner and everything else and find those precious moments slip away.

The big picture is that I have two pretty fantastic kids and although I keep trying to raise the bar on myself, when I reflect on their growth, their kindness to each other, their ability to push themselves to be better- I realize that they are just fine. I will likely always challenge myself to do better, if I expect it from them – they should expect it from me. My goal in the end is no different than any other mother or parent, to cherish my children for the time that they are mine. They will grow up, they will have lives of their own and if I have done my part they will raise children by day and challenge themselves at night.

If you worry that you give too much attention to one, not enough to another or that your time isn’t evenly split- let me give you permission to give yourself a break. If you are worrying that means you are pretty great to start with. It’s hard being a parent, it is tough being a special needs parent (being the champion you child relies on), it is really hard being an engaged present parent especially to multiple children and it is impossible to be the perfect parent. So be you! Be the mom that your kids adore and try your best to be a part of these quickly passing moments.

 

#hopeforautism #autismmom

 

Faith

Faith.

Faith is a funny thing. I have had faith in God and an understanding of a greater plan since I was a child. I often have leaned on faith when the world doesn’t make sense or when going difficult times.  Since Lindsey’s diagnosis I have had faith that we would get thru this. I’ve recently given that deeper thought. I believe that faith in God’s ability to provide me with answers was often confused with self confidence in finding a solution.

I know without a doubt that specific people, stories and opportunities were laid in my path by God. (There is no other explanation of having the ability 100% of the time to talk to the right person in the right place at the right time.) But it took meditation on this to stop and realize that I have done nothing, my daughter is recovering and I have simply been a tool for God to use. Lindsey has taught me so much; she has taught everyone she has met something special. But it is only when I step back and look at the big picture that I realize this isn’t about me, it’s not even about Lindsey, it is about God and having faith. This is his plan; he is using us to testify to the goodness of him and the gospel. Knowing that he is the captain of this ship, not me, not her doctor but God, helps us move forward. He knows her story can have an impact, he lead me to share our journey so that others could find faith and hope. For that and for all else all glory should be to God.

So I write this particular message in hopes that this serves as a reminder, on the days that we are overcome with pride and joyfulness and on the days that the tears won’t stop from fear of what tomorrow may bring- the reality is that God has it all under control. That we should remember we are never alone in this we have each other, we have our family, we have friends and strangers that willingly help and we always have God by our side.  

This is my most intimate post and it may not be received well by everyone, it may not be my most eloquently worded message but it is my very best advice.  Thru it all remember you do not carry the weight of this alone, you are not tasked with knowing all the answers or expected to perform miracles- that is what God is for.

-All my love to you and your families-    

Labels open doors

It’s tough having a label on your child; parents want their child to be seen for ALL they are not seen simply as a diagnosis. But that diagnosis, that label is the key that opens doors. When Lindsey was diagnosed I was not shocked, I knew something was “off”, but I was concerned. I was worried about what that meant as a prognosis, how would her development be impacted and what changes we should make to our expectations.  

I found that I became a stronger mom once she was diagnosed, I have always been head strong and this new challenge brought my competitive side out. If Autism was going to try its best to steal my daughter, I was going to fight back- and knowing what I was fighting was the first step.  Knowing and studying Autism allowed us to find a plan of action, but most importantly it allowed us access to the right therapies, schools, IEPs, scholarships, insurance coverage's and more.

These tools, these necessities are accessible and affordable if you go thru the right channels. First – let it help guide an IEP, see what therapies and support you can gain thru your child’s school. This will do 2 things, it will help them developmentally (At school - Speech Therapy, Occupational Therapy, Physical therapy etc.) and it will allow them to have more opportunities to learn inside their classroom. Then move on to your insurance company, contact them and discover what insurance covered therapies are available. With these two pieces in place you are setting the stage to be eligible for scholarships that require public school experience and IEP’s. In the state of Florida the most popular is the McKay Scholarship, once a child with a disability is approved they determine an amount of money that you as a parent can apply to private school, whatever private school you believe will best suit your child’s needs. Several plans like this support the Autism community in helping our children thrive.

With this information and diagnosis it becomes the parents responsibility to research and find the best solutions for that child and for that family. The good news is there are many options and many paths to recovery or paths to help that child become their best. It is often overwhelming, it is often frustrating and emotionally exhausting- BUT it is also the most rewarding experience I have ever encountered. I would do it over and over again if it meant enjoying the victories time and time again. No one will ever say it was easy, but being a parent isn’t supposed to be easy. Being a parent is hard work- children often come first, you support, guide and help them become the people of society you hope they can represent. Our children are our gifts to the world.    

Ultimately the best thing that happened to us- happened when Lindsey was 3 years old. On a day that could be marked for some as the most devastating day of her life, I choose to look at it as the most fantastic opportunity to help her recover. Without that terrible moment of knowing this was real and that a real fight would be imminent, I would not have known how to prepare for it and ultimately we will defeat it.

If you are holding off on getting a formal diagnosis out of fear of a label or concern of what others may think- PLEASE DON’T.