Community

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I’ve always had a wide variety of friends. From the time I was in high school I seemed to float between groups during different seasons of life. I had a handful of really close friends that were a constant, but overall I tried to be friends with all different groups of people. I’m not really sure why or what that means about my personality, but I think deep down I was always seeking positive relationships, energy, emotions and support.

Over the years, especially when I became an adult and a mother, I began to realize the importance of friendships, community and the impact they have on my life, now, as a role model for my children. I began to understand how relationships can influence your attitudes, thoughts, emotions and decisions; and I began to see how important positive peers, friendships and associations are when it comes to your walk with Christ and daily lives.

I have been blessed with a lot of amazing friends from all walks of life, each bringing different and unique perspectives, love and support to our family. I have old friends, who I’ve known for years, who I know would be here in an instant if I called. I have an amazing group of special needs moms who “get it” and can always relate to the struggles and victories we face on a day to day basis. I have amazing neighbors, church and school friends who love and pray for our family, pick up the slack on the hard days and help out all the time. A lot of these friends overlap groups, but the common denominator between all of them is that they are a community of love and support for me and our family.

I hope and pray that I am the same for those friends. I have come to realize how important community really is when it comes to faith and healing as well. We couldn’t “do life” without these friends. And I truly believe that surrounding yourself with positive, uplifting and Christ-like friends only strengthens your own walk with Christ and deepens your faith, promoting overall health and healing both in body and spirit.

There have been hard and dark times, when I felt alone, isolated and hopeless. I felt like no one understood what I was going through or how hard life was at that time. But looking back on those times, I see how I had isolated myself and withdrawn from the community and support around me. I know now how important that community is and how opening up and sharing my vulnerabilities and struggles only helps to heal them.

“And let us consider how we may spur one another on toward love and good deeds, not giving up meeting together, as some are in the habit of doing, but encouraging one another— and all the more as you see the Day approaching.” Hebrews 10:24-25

To Miles’ Teachers

**Originally written 8/31/16

Today was the start of another school year for my younger son Miles. For the last two years, as my older son Chase has begun his school year, I’ve written his teachers, therapists, and aids letters – roadmaps if you will – discussing all his “special needs” associated with his Autism diagnosis. This year, today specifically, I feel the need to write a letter to Miles’s teacher – a road map to his personality and struggles.

Chase’s letters/notes are easy to write. Obvious. He is non-verbal, so there are lots of things to explain regarding his iPad, behaviors, non-verbal cues, wants, needs, strengths, weaknesses, etc. With Miles it’s not so black and white. So to Miles’s teacher…

Today was the start to another year. You may have noticed the apprehension and nervousness in Miles’s demeanor when you came for your home visit yesterday, to welcome him to his new class; and even this morning when entering your classroom. While he seems so social and outgoing on the outside, Miles internalizes and worries about so many things.

He spent the summer going to super hero and soccer camps, never missing a beat, and always asking/begging to know when it would be time to go back to school. He LOVES school! And he loves to learn, to socialize, and to have something that’s his own.

You will quickly see that he has a huge heart. He is a natural leader. And he is very empathetic, always looking out for others and willing to include everyone. But today, I noticed another side of Miles…fear/nervousness/apprehension about going to school, starting something new and unknown.

He’s always been my go-getter, strong-willed and stubborn, yet sensitive and loving. As he’s gotten older and begun to understand more, I am noticing him picking up on EVERYTHING and taking on roles no four year old should have to take on. I cringe at the thought of all the doctors visits he’s been dragged to – from neurologists to homeopaths – and the therapies has to wait patiently outside of for hours at a time, but that goes with the territory of having a special needs sibling.

While it hurts my heart to write this, Miles looks to school to fill a void of friendship, attention, and play that he is not getting at home. As much as I would LOVE to see my two sons running, playing and laughing together, that’s not the reality of life at home. As hard as it seems day to day, I know these experiences are shaping Miles to be a special soul himself. He intrinsically knows why Chase won’t play with him, why he can’t talk, and why their relationship is “different.” But I know it still hurts him deep down.

Miles is Chase’s biggest fan. From the time he was born he has looked up to Chase and wanted nothing more than to have his attention. Because of the Autism, Miles doesn’t get it very often. But he never gives up trying. He is protective of Chase, always looking out for him, making sure he’s OK, and “showing him off” to all his friends. The pride he exudes when Chase does something new or great warms and breaks my heart at the same time.

Miles knows pain, he knows stress, he knows worry, he knows heartache, and victory, but most importantly he knows unconditional love. So while it’s not “ideal” for him to live with certain stresses at home, I know without a doubt it will make him a better person in the end.

I do my best to nurture his spirit, encourage and build his confidence, reassure him and praise him for the wonderful person that he is, but at the end of the day I am just doing the best I can with two children who have extremely different wants and needs. I pray constantly for guidance and patience. I know God has special plans for his special little soul.

I don’t have specific instructions or advice to go with Miles, I write this simply so you will know where he comes from, why he is the way he is, and help him to grow in confidence this school year.

Thank you for investing in our children. Nurturing their curious minds and spirits. And helping to shape them to be better kids with each day!




Autism Is…

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**Originally written 3/31/15

Autism is a spectrum disorder. It means a lot of different things to each person affected by it, depending on where they or their child is on the spectrum. Some kids with Autism are brilliant, verbal, but slightly socially awkward; while other kids are non-verbal, low IQ, poor social skills, have severe behavioral deficits and are one hundred percent dependent on a caregiver. You will never meet two people with Autism who are alike. There is a saying “once you have met one person with Autism, you have met one person with Autism.”

Here are a few Autism fun facts: (taken from TACA )

  • Autism now affects 1 in 68 children (now, in 2018, it’s 1 in 42 boys affected by Autism, 1 in 189 girls)
  • Autism is a bio-neurological developmental disability that generally appears before the age of 3
  • Autism impacts the normal development of the brain in the areas of social interaction, communication skills, and cognitive function. Individuals with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities
  • Boys are four times more likely to have autism than girls
  • About 40% of children with autism do not speak. About 25%–30% of children with autism have some words at 12 to 18 months of age and then lose them. Others might speak, but not until later in childhood
  • Autism greatly varies from person to person (no two people with autism are alike)
  • The rate of autism has steadily grown over the last twenty years
  • Comorbid conditions often associated with autism include Fragile X, allergies, asthma, epilepsy, bowel disease, gastrointestinal/digestive disorders, persistent viral infections, PANDAS, feeding disorders, anxiety disorder, bipolar disorder, ADHD, Tourette Syndrome, OCD, sensory integration dysfunction, sleeping disorders, immune disorders, autoimmune disorders, and neuroinflammation.
  • Autism is the fastest growing developmental disorder, yet most underfunded.
  • Children with autism do progress – early intervention is key
  • Autism is treatable, not a hopeless condition

To me, Autism is NOT what defines Chase though. It is not a label, it is not who he is, it is not all that he is, is it merely a diagnosis, a road map of sorts, as to how he learns, interacts with and sees the world around him.

In the beginning, the word AUTISM was scary. Before we had the diagnosis I was terrified of it. I thought everything about Chase would change if he got that diagnosis. I was afraid people would only think of him as “autistic” and not see him for who he really is. I grieved the diagnosis when he got it. The dreams I had for Chase, the plans, the future. Nothing was going to be how I had imagined it would be, or had planned it out in my head. But that’s when my eyes were opened and my faith restored. Silly me for thinking I was ever in control or could actually plan out the future.

Shortly after Chase’s diagnosis I was doing my daily devotional and read this passage…

“I am leading you, step by step, through your life. Hold My hand in trusting dependence, letting Me guide you through this day. Your future looks uncertain and feels flimsy – even precarious. That is how it should be. Secret things belong to the Lord, and future things are secret things. When you try to figure out the future, you are grasping at things that are Mine. This, like all forms of worry, is an act of rebellion: doubting My promises to care for you.

“Whenever you find yourself worrying about the future, repent and return to Me. I will show you the next step forward, and the one after that, and the one after that. Relax and enjoy the journey in My presence, trusting Me to open up the way before you as you go.”
Deuteronomy 29:29; Psalm 32:8

The things that Chase has taught me – I’ve elaborated on this before in a previous post –  are things I may not have learned without this journey. I began to see Autism as something more. Yes, Autism sucks, I wouldn’t wish it on anyone. There are a lot of hard days. A lot of money spent. A lot of researching. And a lot of sleepless nights. But in the midst of all the struggles, my eyes were opened to what this journey was meant to teach me, us, our family. The relationships formed, the tears shared, the “club” of supporting moms, strangers willing to reach out and help because they get it. There are good people in this world.

I have come to learn and understand that Autism is not just a learning or developmental disorder, it is also a disorder of the gut, brain and immune system. My eyes have been opened to the toxic/GMO/processed/unhealthy world of food and drugs that we live in. I have learned so much about our bodies, how food/drugs/ingredients/environment/etc. can affect it, harm it, make us sick…and also how we can heal from it.

The people we have met, the connections we have made, the journey we have taken…it has all been because of something much bigger than ourselves or our sole efforts. God has had a hand in this journey since before Chase was even born. I know without a doubt He has big plans for all of us and I pray daily that He will use our experience to glorify Him and help others in similar situations or struggles.

April is Autism Awareness Month. I challenge everyone to educate yourself and others about what Autism actually is. Because with growing statistics like 1 in 42, chances are you or your children will interact with someone with on the spectrum at some point in their lives if they haven’t already.

Dear Miles,

**Originally written 2/22/15

I spend most of my time writing about Chase and therapies and diets and all things Autism related, but this past week “snowed in” has gotten me thinking about Miles. Albeit whiney and attention craving (what two and half year old isn’t?), I’ve realized what all he has to put up with and how mature beyond his age he really is…so this post is for you Miles!

Dear Miles,

From the moment we found out we were pregnant with you we were thrilled with the idea of having a sibling so close in age with Chase (you would be 23 months apart)! Having both had brothers and sisters so close in age, your dad I wanted the same for Chase (and for you). When we found out that you were a boy, and that Chase was going to have a little brother, we were even more excited!

This was all before the reality of Autism crept in to our lives.

We had dreams of you two being best friends, playing sports together, being close throughout school, fighting over girls…typical dreams, of typical parents and typical families. But our life is not typical. As we counted down the days to your delivery, the realization of Chase’s Autism also kicked in, and those dreams quickly shifted.

The months after you were born were both joyful and heartbreaking. We took in every moment with you, getting to know you, and feeling the love in our hearts expand from one child to two. But the reality that Chase would not dote on or notice his new little brother was always lurking. He cried every time you cried. He did not want to hold you or touch you or want anything to do with you. He didn’t know how to. He didn’t understand. Those dreams of you two being best of friends felt shattered.

As time went by and you grew and developed and became mobile, you followed Chase all over the house. You wanted to do everything your big brother did. Play with everything he played with. You just wanted to be near him, have his attention, if even for a few seconds. You didn’t get it often, but you never gave up. You never stopped trying and you never got upset when Chase turned and ran the other way.

As hard as it was, and still is, to watch sometimes, we are beginning to realize what an amazing little soul you are. God has a big plan for your life and it started with being Chase’s little brother. We see you grow and develop in to a super smart little boy. You are full of personality and humor. You are relentless in your attempts to get Chase’s attention, and you never give up on trying to engage with him, get him to play, give him affection. You are the BEST built-in peer model any child with Autism could hope for!

It has gotten better with time. Chase has warmed up to you. He actually pays attention to you now and laughs with you, wrestles with you, lays in bed with you, lets you hold his hand, and hugs you back! It warms our hearts to see the bond you two are forming, in your own little unique way. And the empathy you are learning through your personal experiences at home is something we could have never taught you.

Miles, you are one amazing little boy! You are so sensitive and caring. So loving and gentle. I sometimes cringe at the level of maturity you have had to rise to at such a young age, but I know God has put you in our lives for a special reason and that you will do wonderful things as you go through life. You get away with a lot more than I like to admit, but you also deal with way more than most two and half year olds should have to deal with at your age.

You are a true blessing dear sweet Miles and I thank God EVERY day for both you and Chase and all the amazing things you teach your dad and me!

xoxo

Photo cred: Kristen Reed

Trust Your Gut & Trust God

IMG_4093**Originally posted 1/1/14

Chase was around 15 to 18 months when we started to notice a regression in development. He seemed to have hit a wall when it came to progression of speech and had even started to lose the few words he was saying the months prior. We expressed concern to his pediatrician and he told us to “give it some more time, he was still young.” As the months went on, and still no new words and no new developmental skills, we continued to press his pediatrician for answers or guidance, but he kept telling us, “he’s a boy, boys can be late talkers compared to girls, give him ’till he’s two.” So we waited, and we prayed for guidance and discernment. And then arrived baby number two, our sweet boy Miles, one month before Chase’s second birthday.

People would tell us Chase was reverting or rebelling with a new baby, “just give him time to adjust” or “he’s just being stubborn.” But Chase and I knew deep down that something wasn’t right, our guts were telling us differently. I spent many many hours laying awake at night, researching and reading online, crying, and praying to God to please let him start talking, learning, developing normally. His pediatrician still wouldn’t say the word (Autism) or give us any guidance or affirmation as to what to do or where to go! In fact, he brushed off our concerns of Autism all together. But the regressions kept coming.

At that point we took things into our own hands and began the journey of advocating for Chase…

I wanted to make sure I covered all my bases, so I took Chase to have his hearing checked. A friend referred me to a lady who used to run the KITE Center for kids with Autism. I went to her home office for an initial assessment to see if she could do anything to help. She work with Chase for about an hour and tried to get him to point to pictures, play with certain toys, repeat words, but he had never met this woman before and wanted nothing to do with it. She then tested his hearing, but couldn’t get an accurate reading because he wouldn’t cooperate, so she had us come back the next week to try (and fail) again. She proceeded to charge me $150 for her time and a week later emailed me a couple of paragraphs with her suggestions; which basically said that Chase had “behavior issues” we needed to address and that we needed to have a strict routine at home to work on these behaviors before she could help him. I was IRRATE! His delays and regressions were not BECAUSE OF to his behavior. I believed and KNEW with all my heart it was something more than behavioral problems.

We were at a loss and no one would tell us what to do. I didn’t trust the previous hearing test we had done so I took him to the West TN Hearing and Speech Center to have his hearing professionally tested (which turned out to be perfectly normal) and was finally given some useful information. The technician doing the testing talked with me about Chase’s delays and why we were having his hearing tested and told me to get one of the fliers at the reception desk and call TEIS; that they would come out to our house and do an assessment for free and determine if Chase needed any types of therapy. Hallelujah! A small breakthrough! WHY COULDN’T CHASE’S PEDIATRICIAN HAVE TOLD US ABOUT THIS PROGRAM MONTHS PRIOR??? This is something I still struggle with and don’t understand.

TEIS came to our house a couple of months after Chase turned two to assess and determine where he stood developmentally. He wouldn’t cooperate for most of the time, but they saw enough to decide that he needed speech, developmental and occupational therapies. And so those began. We didn’t have a formal diagnosis at that point, but I hoped and prayed that with some therapy he would catch up to speed quickly.

We started speech therapy two days a week and developmental therapy an hour a week in our home. The therapists were so sweet and helpful and one of them told me about a program at the Therapy and Learning Center (TLC) for children with special needs. This daycare program is very hard to get in to and very good, but if a child is receiving therapies through TEIS they get priority and bumped to the top of the list. I immediately got him on that list and Chase got in the first of September. He began going 3 days a week, was still getting speech twice a week at home and began getting his developmental and occupational therapies at TLC while he was there 3 days a week. The therapists were all great, and I cannot say enough wonderful things about his teachers Miss Kecia and Miss Leslie. They helped him so much, but it was still not enough in my mind.

**On a side note, shortly after we found out about TEIS I switched to a different pediatrician. I had gone to our new doctor one day when Chase was sick, because our regular pediatrician wasn’t in that day. I mentioned to the new doctor a few of my concerns about Chase and his lack of talking, and his response was, “Well, I’m not equipped to diagnose anything, but I can tell you from the few minutes I have been in this room with Chase that he shows several signs of Autism.” I switched to this doctor from that day forward. I appreciated his honesty and for validating my concerns. I wasn’t crazy after all!

I tirelessly researched more online and decided to make an appointment at Vanderbilt with a developmental pediatrician to have Chase formally assessed. It was going to be four to six months before we could get in, but at least we were on the list! It was some of the longest four months of my life!

December 4, 2012

I will always remember this day. Chase, little Chase and I all drove to Nashville for his visit with Dr. Zachary Warren at Vanderbilt Children’s Hospital. They told us the appointment would last anywhere from two to four hours, and it did. I was physically sick and a nervous wreck leading up to that day and all throughout the visit. We had filled out pages and pages of questionnaires prior to the visit and still they asked us hundreds more questions about Chase’s development, behaviors, etc. Then they performed a series of activities and tasks with him to see what he knew and what all he could do. After what seemed like an entire day in that exam room Dr. Warren came back in with his official diagnosis…AUTISM. We knew it.

I couldn’t even cry. I wanted to. He asked if we had any questions. I had a million, but couldn’t think of one. He asked if we needed a minute alone. I just wanted to leave. As soon as we got in the car the tears came. I’m still not sure what they were for. Sadness. Relief. Fear. I was overwhelmed with every emotion, but the one that hit me the most was LOVE. A deep, protective love for my sweet baby Chase. I knew, even before that visit, that I would do ANYTHING for this child, but now God was putting us to the test. I will never forget pulling out of the parking garage at Vanderbilt and Chase said, “We are going to have to move to Nashville. Chase can’t get the help he needs in Jackson.

And so the healing journey began…

Today, looking back, four years post diagnosis, my advice to any parent questioning anything developmental or health related about your children is TRUST YOUR GUT, but foremost TRUST GOD! God’s timing and the people he placed in our lives, at just the right moments, are so evident in hind sight. In the midst of stress, struggles, fears, etc, it’s not always easy to trust that God has a plan, but once you make it through the storm, if you continue to trust in the Lord, His plans are always clear. Another piece of advice is don’t always assume that doctors know best. YOU are the one who knows your child inside and out, better than any doctor out there. You are your child’s voice and advocate. Don’t give up and don’t stop fighting for your instincts!

“Have I not commanded you? Be strong and courageous, do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9

Not So Many Words

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**Originally posted 3/5/14

I say this all the time, but I am continually blown away by the things Chase teaches me and shows me every day! I know that all children are a blessing in their own special way, but Chase has taught me so much about life, faith and humility in the four years I have been blessed to be his mother.

I see God working so many miracles through him and teaching me so much in the process. Some days feel like a constant roller coaster, but I have learned to try to see the positive in every situation. It’s not always easy, but I know that things could always be worse. There are people in this world going through much harder things and living in much harder circumstances. I never want to minimize other peoples’ struggles, or act like our life is so hard. I try to be thankful every day for the things we have and the opportunities God has set before us.

Patience has never been a virtue of mine though. I am proactive when I want something, and can be an instant-gratification kind of person. I have mentioned in the past, when we took the leap of faith to move our family to Nashville, was one of the toughest tests of faith and patience I had been through to date. But God continues to show me ways to practice patience every day, not just with the boys, but with myself.

Words don’t always express “I love you.” For the longest time all I hoped and prayed for was for Chase to talk…to say ANYTHING. I still long to hear him talk and say “I love you mom,” but again I am learning patience in God’s timing with this; and He has opened my eyes to the many other ways Chase communicates and says he loves me, in not so many words. He has shown me that actions speak louder than words and love can be expressed in many other ways!

Hugs have always been something Chase has been really good at giving and he always knows exactly when they are needed. He gives the most tender hugs and I know it’s his way of saying, “I love you mom.” In those sweet moments I thank God for him and everything he teaches me, not by what he says to me, but by what he shows me through his actions. I watch him interacting with Miles and playing in his own unique ways and it warms my heart. I watch them playing “chase” through the house, wrestling and laughing together and his unspoken words fill the space.

Looking back on the last year and everything we have gone through to get to this point has made me realize even more how thankful I am that God has given me this opportunity and platform to share our story, a story that Chase cannot tell himself, to advocate for him, and help other people on a similar journey!

Thank you Chase for opening my eyes every day to something new and teaching me so much on this journey we are sharing!

Just Be “Mom”

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**Originally written 8/18/14

When this whole journey started with Chase and he began therapy with TEIS (around age two and a half) I put a lot of pressure on myself to do as much therapy on my own with him outside of school. I was constantly beating myself up, feeling like I could have done more that day; I should have done more. I hear these same feelings echoed from a lot of mom’s with children on the spectrum. We always feel like we could be doing MORE, always! And it can really beat you down emotionally.

Someone once made the comment to me, “Just be his mom, and don’t put too much pressure on yourself the be his therapist 24/7. He needs a mom first and foremost, more than a therapist.” And when I stopped and really thought about it, it was true. Yes, he may have learned to stack blocks faster if I had pushed harder, or he may have learned to play back-and-forth catch sooner if we had practiced more, but at the end of the day, I decided I just wanted to ENJOY my child. Life is too short and we were all exhausted and stressed out enough at that point in our journey. I didn’t want to always be “working” on something. I just wanted to play! To laugh! To hug and cuddle! And if I could work in some therapy strategies here and there, throughout the day, while we are playing and doing fun things, then great!

Once I took that pressure off myself I felt like I could breathe a little more. I felt like I actually enjoyed my child more and I think he felt the pressure on him lift as well. I’m not saying not to reinforce therapy strategies at home, but there has to be a balance. Now that Chase is in school half the day and in therapy every afternoon, it doesn’t leave much time to practice or do much therapy at home. So instead, I spend at lot of time emailing his therapists and teachers at school, to make sure they know what he’s working on in both places so that everyone is on the same page and there is consistency. We may spend meal time or bath time trying to work in some strategies, but I try to make it as fun an natural as possible. He’s only 4. He still needs time to be just a kid; and this is something I have to remind myself of often.

I get anxious to push and push and see results, but I know it will only hurt to push too hard. My one piece of advice, that was shared with me, is for any new moms or parents starting out on this journey, feeling like they have to do it all, remember that your child NEEDS YOU as a mom/parent first and foremost. The therapists will come and go, but you are the one constant cheerleader your child will have. The more you can praise and encourage your child and make them feel secure, the best chance they have at succeeding. And I think this is true of ALL children, not just children with Autism or special needs.