Maggie Herndon

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…

**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

**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

**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”

**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.

What It’s Like

unnamed-3

Early on in Chase’s diagnosis I came upon this book called “Chicken Soup for the Soul: Raising a Child on the Spectrum.” I used to love the “Chicken Soup” series when I was in middle and high school, but had no idea they had expanded them to so many different versions now. This excerpt is from the first chapter, but I thought it was spot on and explains a lot about what it’s like, day to day, especially early on in a diagnosis (of any kind, I assume), to live and deal with the struggles and triumphs of raising Chase or any child on the spectrum…

1. In the beginning its like death. No matter how much you plan to give your children the freedom to achieve their dreams, naturally you have a few dreams of your own for them. You dream of birthdays and holidays, Santa and presents, going to Disney World, playing board games, Boy Scouts, sleep overs, team sports, high school graduation, getting married and watching them have children of their own to love. And though many kids with Autism will grow up and do just those things, more than half of them won’t. So you mourn for what might not be. You mourn for what you and they are missing out on now. And later, you may mourn for what will never be.

2. Despite the death of the dream child you envisioned, you are deeply in love with the child you have. He still does adorable things that you want to share with others. He loves you too, but the rest of the world won’t always get to see it. Because when he’s away from home, he’s not himself, he’t out of his element and comfort zone. He’s not the happy affectionate child who holds your hand, snuggles and gazes at you adoringly while pulling your hand back to rub his arm or leg. The world won’t get to see him at his most charming and you will see pity in people’s faces. They won’t ever understand the very real, profound joy this child brings into your life every day. Part of being a parent is pride in your children. People won’t always see what you are so proud of and that can be a lonely feeling.

3. Guilt assails you from all directions. You want to throw a beautiful birthday party for your son, but he may not notice. He may not be the least bit interested in the presents, and you fear disappointing the guests. He may struggle to get out of your arms during the party, and you may see sadness beneath friends’ and family’s smiles. So you consider not having a party. You consider not taking him to others’ parties. You want more than anything to give your child the experiences typical children have and feel guilty when you don’t. But sometimes it’s simply too overwhelming for you to try. Therapists want you to spend hours doing activities to help him, but you also have a job and another child who needs you, and you need some down time on occasion to keep from going insane. So it seems as if you can’t ever do enough for him. The guilt is a killer.

4. You live in a constant state of uncertainty about the future. Yes, of course none of us knows our future. But, if you have a typical child, you can be reasonably confident that he will have friends, self-sufficiency, and love. You know who to leave things to when you die. But if you have a child with autism, you don’t know how to play your estate. Do you set up a special needs trust? Do you leave it all now to the one typical child who can use it? Because lifetime care for your autistic child will just drain it. And what if he grows to do well and is able to care for himself? Because you can’t yet guess what will be, every option seems wrong. Uncertainty can affect every part of your life. Should you settle down where you are or should you relocate to a city with more intensive care for his needs? Will he ever talk? Will be ever be potty trained? You just won’t know until it happens or it doesn’t. And you live with fear that one day your then-elderly, vulnerable child will lie sick or dying without comfort of someone who truly loves him. Anxiety runneth over….

5. Spontaneity is a thing of the past. You can’t just get up and go. You have to determine whether there is an escape route from any new activity or location. You have to pack things to distract him if he becomes upset. You have to determine if foods he will eat will be present or if you will need to pack his meal. If he isn’t potty trained, you will worry about where you can change his diaper that will afford you both some dignity. Everything must be planned and considered before leaving the comfort zone he is used to.

6. You begin to grow thicker skin because people stare. They stare in disgust, thinking he is simply badly behaved. They stare because they are curious. They stare in horror or pity – something about him is “different”. People stare…and the thing that will come back to haunt you are the memories of when you, also, made a judgement about another person in public. Righteous indignation mixes with humility and all you want to do is get out of wherever you are as quickly as possible. But you can’t escape every day life.

7. You grow weary of everyone else’s opinion. Because there are so many of them. There are those who are certain they know how “this” happened. There are those who are certain they know how to “fix” him. There are those who don’t think you do enough. There are those who believe you to be a saint. There are those who believe your child’s very visible difficulties allow them to have an opinion over your finances, his education, your marriage, and even your decision to bear another child or not. Opinions abound, but your patience may not.

8. But mostly, having a child with autism, is LOVE. A love that you, if you are a parent, can probably imagine. And a love that you can’t imagine if you don’t have child born with a bulls-eye in a big, bad world. Unconditional doesn’t begin to cover it. Limitless. Earth-moving. Making you question everything you know to be true about God and man. And that kind of love will haunt you ever moment of every day. You can see it just behind the eyes of every special needs parent on the planet. We are filled with a love we never could have predicted. We are filled with fears we never could have imagined. We are, quite simply, at capacity most every day. And, yet, when inevitably called for, we find that capacity expands. We aren’t better parents than those of typical kids. We aren’t saints. And our children aren’t lucky to have us. We are lucky to have them. Because, despite all the very challenging aspects of having a child with autism, none of us will walk away from this life without having grown – merely from having loved them. Having become more than we thought we could be.

**This was originally posted on 6/1/14, about 6 months after Chase’s diagnosis of Autism. While there are definitely days where these feelings creep up, still, I find comfort and hope in God’s words today…

“I will instruct and teach you in the way you should go; I will counsel you and watch over you.” Psalm 32:8. “6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends understanding, will guard your hearts and your minds in Christ Jesus.” Phillipians 4:6-7.

“The secret things belong to the Lord, our God, but the things revealed belong to us and our children forever, that we may follow all the words of this law.” Deuteronomy 29:29. “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, are an act of rebellion; doubting My promises to care for you.” Jesus Calling.

See, early on in Chase’s diagnosis, while I prayed to God daily, often, I still wanted control over the situation, the diagnosis, the future. Fear and anxiety controlled my every day life. It’s a daily challenge to turn these thoughts of worry over to God, but when I choose to “let go and let God” the weight of worry and fear are lifted and life is so much sweeter. While I still have days, occasionally, where the “grief” and “woe is me” gets the better of me, they are fewer and far between now that I have realized and really come to understand that ultimately God is in control. And while I can try my hardest, His plan for Chase is already laid out. I strive to “lean in” and let God guide our journey today, rather than letting the fear of the future be our guiding compass.

“23 Yet I am always with you; you hold me by my right hand. 24 You guide me with our counsel, and afterward you will take me into glory. 25 Whom have I in heaven, but you? And earth has nothing I desire besides you. 26 My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” Psalm 73: 23-26

Intentional

unnamed

Motherhood is hard when your children are young and one hundred percent dependent on you for most everything; especially when you have a non-verbal child with special needs. I’m left feeling deflated at the end of the day, more often than I’d like to admit. Like every ounce of me has been taken, by little demands, wishes, requests…all day long. And then, I find myself going to bed thinking, “I should have ____” … played with them more, read them books, yelled less, shown more grace, talked to them about Jesus, or slowed down and listened – really listened.

Sometime this past fall, life began to take on a whole new meaning for me. Maybe it was watching close friends lose a child or dealing with the reality of chronic illnesses of my own and my son’s. I felt an urge, a pull, deep within – a void that wasn’t being filled. I knew it was God, stirring up inside of me what I didn’t want to admit. I wasn’t being intentional in my walk with Him, in my daily faith, in my prayers and in reading His Word. But it’s hard to find the time when one child is up most every night, or wakes up before the sun, or doesn’t go to bed without melatonin. Those are all excuses though, and I knew it. Stress and anxiety were taking over my life and robbing me of my faith and my family. I decided it was time to be intentional in my walk of faith and sat down to really think through ways I could do this on a daily basis.

LOVE GOD
I know it sounds simple and basic, but for me, being intentional about loving God throughout my day reminds me of who I’m living for. Deuteronomy 6:5-7 says “Love the Lord your God with all your heart and with all your soul and with all your strength. These commandments that I give you today are to be upon your hearts. Impress them on your children. Talk about them when you sit at home and when you walk along the road, when you lie down and when you get up.” Making an effort to acknowledge God, whether with short thank you’s or simple prayers, keeps Him at the forefront of my mind and heart.

STUDY GOD’S WORD
Despite having young children, little sleep and constant needs to meet, getting into God’s word needed to be a priority of my own. Not every day allows time to sit and really study my Bible, but I’ve recently signed up for daily emails and started following She Reads Truth on Instagram. Being intentional, even when reading/scrolling through my news feeds and coming across a verse or two, helps to shift my focus to the Lord. If I can’t sit down and spend time in the word, I have these daily readings and verses to speak truth into my hectic days. And reading those words, really studying scriptures, always leaves me refreshed and renewed. “Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is – his good, pleasing and perfect will.” Romans 12:2

PRAYER
Prayer has never been a strong suit of mine, I’ll admit. Sitting down and praying over lists and requests has always been hard for me. Laying down at night and trying to say my prayers almost always ends with me falling asleep half way through them. Maybe it’s this season of motherhood or maybe that’s not what prayer “looks like” for me. I usually find myself driving alone in the car or out on a walk, sporadically praying as things pop into my mind, weigh on my heart or are cause for thanksgiving. My prayers probably seem more like conversations. I’ve also found in recent years, especially since having children and mom-brain, that prayer journals are a great way for me to pray for specific needs, people, requests, etc. It’s a way for me to be intentional in my daily prayers and be able to look back at how God has answered (or not) prayers and worked in our lives throughout the weeks and months. No matter what shape or fashion my prayers takes, I always try to remember the verse, “Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” 1 Thessalonians 4:1.

Stress and anxiety have been a big struggle of mine, more than I realized, these past few years. Another verse I turn to often, when I feel myself slipping into the depths of fear and anxiety is, “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7.

A friend recently told me about a “God Can.” The idea is simple: take an old coffee can or jar, name it the “God Can” and whenever you feel like you can’t do something or begin getting anxious or stressed, write it down and put it in the “God Can” because whatever we can’t deal with or can’t do, God can! My goal for 2018 is to be intentional in my faith and intentional with my family and relationships. I’ve let the grips of anxiety control me and my health for too long. It’s time to really turn them over to God and press forward in our journey of healing!

A New Chapter

The beginning of a new year is always full of resolutions, goals, diets and people resolving to “start over”… and I guess this year I’m jumping on the bandwagon and starting fresh myself. I’m not a huge fan of resolutions, because honestly, I forget about them a few weeks or months into the year. This year; however, I am making a conscious EFFORT, instead of a resolution, to conquer STRESS!

Yesterday marked the beginning of a new chapter for me. I turned in my resignation at my job as Social Media Manger for Cumberland Heights. I have been in that position for a little over 2 years now, and it has been a wonderful opportunity that has allowed me the flexibility I needed and wonderful teammates I now call friends. But all good things must come to an end. Yesterday was just one step, amongst many, in my efforts to conquer stress.

It started in October after we visited our Lyme doctor in Philadelphia. He sat me down and basically said that the stress and anxiety I am experiencing, putting on myself or not able to control (because of life circumstances), was creating overproduction and dysregulation of cortisol that is affecting my health. He said my body is in “fight or flight” mode most of the time because of this, and then gave me a list of strategies and suggestions on ways to manage stress going forward. But like everything, it takes time and figuring out what works best for me.

I began taking inventory of things in my life that contribute to my stress and anxiety levels. I’ve made a few changes to eliminate, or at the least recognize, the small things that I can control, while also recognizing the things I cannot control (insert Serenity Prayer). I’ve also been trying to learn new ways to cope or react during times of high stress.

As Thanksgiving approached I wanted to go into the holiday season with as little pressure and stress as possible, so that I could be present, enjoy the time with family and make memories with the boys. I wanted to experience the true beauty of the holiday, instead of holding my breathe just trying to survive it. And I have to say, this may have been the best Christmas holiday to date!

Like all things in life, the rollercoaster must come down at some point, and that started on New Year’s Eve when the stomach bug hit our whole house. It’s been a rough start to the new year, and with mounting pressure of new goals, expectations and deadlines from my job, it all just seemed like too much to handle.

I’ve gone back and forth for almost a year now on whether working was the right thing for me and for our family. I’ve prayed for guidance for a long time about this. I’m not a quitter though and I hate letting people down – I want to be able to do it all (thank you Type A personality). So I’ve kept going, kept working and kept getting sicker.

It hit me like a ton of bricks on Wednesday night though. The stress and pressure that sometimes creeps in was too much. Once again, I prayed for a clear sign or answer from God as to what I should do? I hadn’t even contemplated not working in months, but in that instant I knew my working days were done (for now). I can’t explain it. I just had this overwhelming feeling that it was time to focus on ME, my health, my family, my faith.

So a new journey begins in 2018. While I’m sad to see that door close, I have peace about the decision and am excited to see what God has in store for our family in the weeks, months and year ahead!

Peace and blessings in 2018!

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
enjoying one moment at a time;
accepting hardships as the pathway to peace;
taking, as He did, this sinful world
as it is, not as I would have it;
trusting that He will make all things right
if I surrender to His Will;
that I may be reasonably happy in this life
and supremely happy with Him
forever in the next.
Amen.

Suffering & Hope

unnamed-3

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” Elisabeth Kübler-Ross

No one asks for defeat, suffering, struggle or loss. You grow up and have hopes and dreams, but those aren’t always reality. This past year we have been touched in one way or another by all of these things, both personally and through close friends.

A friend recently said it best…”Our journey with children has been far different than we ever dreamed of, yet we find peace in God’s plan and comfort in His presence, and will follow Him into the unknown because HE is our redeemer!”

Life is hard, especially with young children or when you experience any of these things, but choosing to find the joy and peace that each day brings, despite the struggles, offers HOPE and perspective in an otherwise depressing world. And sometimes, even though it sucks in the moment, suffering can be the thing that eventually brings the most joy – community, solidarity, friendship and fellowship.

Our preacher recently preached on suffering and said, “Friendships are formed when one person looks at another and says ‘Oh, you too?’ All suffering has a shelf life – our best days are always in our future. Don’t let suffering determine your view of God’s love, let God’s love determine your view on suffering.”

While I would never wish or hope for suffering, I am choosing to be thankful for the experiences we have had, despite the hard times, because of where we are today. Because of the friendships that have come from those times of struggle, and because of the things we have learned, the strengthening of our faith, and the mercy of Christ we have seen in those hard times.

This Christmas season I am especially thankful for the HOPE we have in Christ Jesus and what His birth means for those who truly believe in Him and his saving grace!