What It’s Like

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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

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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

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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

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“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!

A Season of Thanksgiving

unnamed-4“…in everything GIVE THANKS; for this is the will of God in Christ Jesus for you.” 1 Thessalonians 5:18

We’ve been on this health journey of Autism, auto-immune disorders, and Lyme for five years now. It’s been a roller coaster in every sense of the word. From the traditional therapies, the pediatrician visits, the integrative/alternative doctors, the homeopath, the chiropractors, the diets…everything we have tried, it’s been up and down, up and down.

I’ve spent the last month reassessing where we are, where we started, how far we have come, how far we still have to go. And when I really stop and think about it, I’m so eternally grateful for every path God has led us down. We have learned valuable lessons every step of the way and with each hurdle we have encountered.

This year, this Thanksgiving, I’m choosing to see something positive in each day, to find at least one thing to be thankful for, today and every day going forward. Because that’s the LEAST I can do. I have so so many things to be thankful for. But we all know it’s easy to lose sight of those things in the day to day grind of life with young kids; special needs or not.

So today I choose to be THANKFUL and look at the positive things each day brings!

 

 

January 7, 2013

unnamedI was cleaning out drawers the other day and found all my old journals. I had started this new blog not sure of the direction I wanted it to go…then I read my very first journal entry (below) from January 7, 2013 and I knew. HOPE!

We both knew, in the back of our minds, it was more than just “developmental delays” or “speech delays.” As much as I had Googled and read online, I knew all the red flags and warning signs to look for, which is why I had scheduled a visit with a developmental pediatrician at Vanderbilt. But it still didn’t make that visit on December 4, 2012 any easier.

I was a nervous wreck, sick to my stomach. I was nervous for little Chase and how he would feel and act during that three to four hour appointment. I was nervous about the outcome, the answer to all our questions, prayers, fears…the impending diagnosis for Chase’s regression and delays.

I hate the label and all the judgement and misunderstanding that goes along with it. As we pulled away from Vanderbilt that day, we decided not to tell anyone about the Autism diagnosis unless necessary. People just wouldn’t get it. I certainly didn’t, until I was forced to learn. It’s such a complex disorder, and our only comfort, at that point, was that we had already contacted TEIS and begun different therapies to help Chase in early intervention. He was two and half at this point. Almost all of the doctors’ recommendations were already in place, except for implementing ABA Therapy.

My husband, Chase’s, first comment once we were back in the car was “We can’t say in Jackson.” There aren’t enough resources and adequate services that will help Chase. And he was right, but it was not an avenue I wanted to explore at that point. I was still processing the diagnosis and trying to figure out what was next.

The next few weeks leading in to Christmas were consumed with getting Chase into every therapy he needed, getting him adjusted to a new school (Therapy and Learning Center), and making sure that every possible thing that was available in Jackson was being done. I still hadn’t really taken the time to process how I actually felt because my days were consumed with schedules, therapies, Miles…and in between all of that, more research online.

I just wanted to get through the holidays this year without having a complete and total meltdown. I wanted to hold my breath and for it all to go away. I wanted my healthy, happy baby boy back.

It was hard to be around family and friends with this “secret diagnosis” looming overhead. Once school started back and our weekly routine resumed it finally hit me…AUTISM!

The last week has been the hardest week for me, emotionally, since we left Vanderbilt on December 4. I guess after 2 months of therapies, working with Chase at home and a new school, it has finally sunken in that this is going to be a long, slow process of healing.

I am the type of person who wants quick and instant results and will do anything in my power to get them, but it won’t work this time. The power and control are out of my hands. I am realizing that the smallest of improvements are the biggest victories. I see change and progress daily with Chase; and while most people would take these for granted, or maybe not even notice, we are jumping for joy over the small things.

Chase may not speak, and he may not know how to play appropriately with toys or his brother, but he is the smartest, sweetest, most loving two year old I know and he has already taught us so much! I know God has big big plans for little Chase and will use him and us to help so many people down the road – that is my hope!

We are going into this whole diagnosis so blindly and with very little guidance, help or resources…I hope one day we can be mentors or help to other families on this journey, or at the very least provide hope and encouragement along the way.