We are continuing the series on caregivers. I use the term to mean those who are taking care of/ will be taking care of someone for a very long time. This could be, being a parent to a special needs child or being a caregiver to a spouse or an elderly parent or a sibling who needs more help. Caregivers like me often struggle to voice our needs. I love being able to care for my son. I know I have been placed in a position of trust and authority and responsibility by God alone. I know I am weak, but HE is my Strength. I see the miracles He has done and how far HE HAS BROUGHT ALL OF US.
But some times………….. Some times I want to tell people, I need a meal today for I haven’t had a moment to think, let alone cook. Some times I want to tell people, would you do my groceries for me, or watch my kids so I can run to the store, because I don’t want to deal with a meltdown outside. Some times I want to say, I need an hour(or maybe two or four!) to go write or read or do a Bible study, without constantly being interrupted, so can you watch my kids please and pretty please?
But generally I don’t say these words or any variations of. Generally when people ask me, I say “I’m great” or “Fine” and try not to bother them. Mostly because I’m embarrassed. I’m embarrassed since these are daily, regular things associated with a family and most people can do them without it becoming a burden. Most days I can. Some days I just can’t.
My husband and I have learnt balance and learnt to be patient with each other and to articulate our needs to each other. If I’m exhausted and can’t prepare a meal, he helps (read: takes kids completely off my hands) with the kids and I have a moment’s peace in the kitchen. If I can’t make a grocery run, I do it the next day or the next or the next or my husband goes to the store 🙂 We’ve worked out a time for me to write or study, and most weeks we try to keep it. At the same time, we’ve worked out time for my husband to get his alone time with God as well. A lot of these solutions came through trial and error and time and patience. We needed to let go of our expectations of ourselves and of each other. We’ve learnt to give grace and ask for grace. We’ve learnt to rest and to try to rest more. We’re still learning to keep First things First and keep boundaries and checks in place.
I started this series as a way to give you, the reader, insight into our lives. Frequently we can’t say these things to you, while we’re greeting you at church or running into you at the store, or speaking to you while we’re in line. We’re trying to wrangle kids, and backpacks and name labels, and making sure said kids don’t have meltdowns. We’re trying to be considerate and not burden you with things you haven’t asked for (like a diaper blow up just before leaving home, or the fight between kids because one trashed the other’s play kitchen, or that I may have worn the same outfit last week to church as well). We’re really trying to make conversation, but not trying to offend when we’re looking all around the room. It’s only because we need to keep eyes on the kids at all times because they can take off and they are fast!!!!! I hope you will be able to see our hearts, our lives and our needs with these sneak peeks into our lives.
I also want to tell you of God’s Faithfulness. That’s the underlying theme behind all these conversations. I want you to know that if God, a Sovereign, All Powerful, Good God has been faithful to us, He will be faithful to you as well. If this God, whose promises are ALWAYS Yes and Amen (let it be), blesses us, He will bless you as well. I want you to know that a life spent serving Him, is NOT a life wasted. I also want you to know that the blessings of God aren’t always health, wealth and long life. He blesses us in ways too numerous to count, and too creative to put into a box. HIS blessing is His Presence, His Spirit, His Word, His Church, His Family, His Peace, His Joy, His Comfort, His Strength.
In His Word Jesus says
The Lord is close to the broken–hearted and saves those who are crushed in spirit. Psalm 34: 18
as well as
Rejoice with those who rejoice; mourn with those who mourn. Romans 12: 15
This series is just that. Being present with people and identifying with their lives. With their sorrows and their joys. With their heartaches and their breakthroughs.
While it feels weird to interview myself, I’m going to do that with this post 🙂 The questions that I gave the others seem appropriate to answer here was well. Please let me know how this post encouraged you, in the comments below.
RELATED POST : For His Glory…..and my growth.
Tell us who you were before this started.
I volunteered. Every where. If they needed help in the nursery at church, I was there. If they needed help setting up or tearing down for Bible Study, I signed up. If they needed meals for someone in church, my name appeared plenty of times on the sign-up sheet. At my daughter’s pre-school I was involved in 2-3 different things, always dragging my son along. I was involved in 2-3 Bible studies a week and I (planned) play dates and tried to keep them as much as possible.
What changes did you need to make in your personal and family lifestyle to accommodate your son’s needs?
First I took a step back. I stopped volunteering for so many things, then stopped volunteering altogether. I stopped attending Bible studies as well, since we had Adam’s ABA therapy sessions scheduled for most of the day, all week. While I stopped attending Bible studies at church, I was growing closer and closer to God. I studied on my own and I went (and still am) deeper into the Word. I learnt to trust God more. I learnt to have more grace with my husband and my children. My husband at this time also started studying on his own. He listens to sermons and goes through study notes from Bible.org and spends anywhere from 30-90 minutes a day (spread out) learning from the Bible.
Socially, we’ve pulled back A LOT!!!!!!! I don’t have too many play dates scheduled, and I only do so, with the understanding that the girls ( Christina and whichever friend she invited) know that Adam’s sessions take priority and they’ll need to be quiet(er) while the therapists are home. I don’t have people over much ( maybe 2-3 times a year). I do a Bible Study at home, around my chaotic schedule with my mentor. She and I have flexibility and cancel meetings as needed. We don’t stay after church to meet with people because Adam has had enough. If there is something at church I really want to help with, we drive in two cars and Raj takes the kids home while I stay back.
We’ve spent more time together as a family at home. I don’t rush off scheduling things to do and places to go. When I want to meet with (some) people, Raj and I talk it over and see if it works for us, (this was NOT what I used to do).
We’re paying attention to our surroundings more, and if something sets Adam off, we leave immediately.
What was your lowest point in being a caregiver?
The first few months after Adam’s diagnosis, every time I said special needs or Autism, I would burst into tears. It took me several months to be ok with it. To this day , those months were my lowest point.
Recently, grief over Adam’s situation just flowed over me, and I was grieving for several weeks. I barely blogged and I did not speak to my extended family much. I could only do what I needed to for my immediate family. There wasn’t a defining point or situation, but I had to talk it through with my family (my husband and my aunt) and my mentor and realize what I feeling. I was overwhelmed realizing that Adam would never do many things that other children his age would do, and I had to make my peace with it.
What was your highest point in being a caregiver?
Over the course of these past few years, God has shown up in a powerful way, and those have been my highest points. Last December(2016) I was in church and realized how far Adam had come. He was making eye contact, being affectionate and we made it through the whole service without having to take Adam out in the middle like we had been doing for a good 6-7 months (at that time, the church we attended had family services so the children sat in with us) and I was just thanking God for His faithfulness.
Another high was when we received progress reports for Adam and saw how much he is responding to ABA. Every 6 months he seems to be gaining and is getting close to meeting developmental milestones. I felt validated when one of his therapists told me that his progress was due in part to us, his parents , for continuing to work with him after sessions. That made me grateful for where God had placed us. He knew and still knows what He is doing.
RELATED POST : Eating marshmallows in church.
How has God made HIMSELF real to you in this situation?
God gave us advice through godly friends and family. He has allowed us to find joy and contentment and peace in the midst of our busy, chaotic lives. He’s given us grace, but we’ve realized that in a personal way, this year and the last. He’s continued to reveal Scripture to my husband and I, so that we can share with each other and then take comfort from those passages.
We’ve learnt to see ourselves through His eyes from Scripture and our godly friends and family. Not that these weren’t there in the Bible before, but now our eyes have been opened. We’ve learnt to rest in Him more and to spend more time with our family. We’ve learnt to pray more and then trust in Him and His timing. These are still a struggle, but a struggle that’s getting easier as we relinquish control and the desire for control.
He’s shown me that I am Loved, Worthy, Redeemed, NOT Condemned, part of a Chosen Generation, a Woman created for Him. This in turn has allowed me to be more gracious to myself, to not beat myself up, not try to meet high expectations (that I’ve set myself!!!), to give my best gift in the moment and to be content. This has given me freedom to be the same way with my husband and my children. His purpose and His plan for me is unfolding and I can’t wait to see where He takes me.
What is your favorite song, verse or sermon that is helping you to get through this situation?
A few months into Adam’s diagnosis, I either heard or read a comparison of the miracles in John 5 and John 9. In John 9 when the disciples asked Jesus, who had sinned, the blind man or his parents for him to have been born blind, Jesus replied neither. This had happened so that the works of God might be displayed in him. This is the promise I’m holding on to for Adam. The works of God will be displayed in him. In his life-time. I’m excited to see what God has in store for him.
Bust some myths for us. Tell us what Autism is NOT.
Autism is a behavioral problem, it’s not contagious. It seems like the number of children (and adults) being diagnosed with Autism or one of its variants on the ASD, have gone up. This is because the diagnostic criteria has been revamped and expanded. The doctors trained with diagnosing this condition have increased and there is more awareness.
Autism has nothing to do with vaccines or food ingredients. The doctor who ‘found’ the correlation between vaccines and Autism has been barred from practicing medicine, and several other more intensive and scientific studies have found there is no relation at all.
While many children on the Spectrum benefit from changes in diet because they are allergic, for most, food does not determine if someone is on the Spectrum or not.
The severity or the incidence of Autism is not related to what parents’ do or don’t do.
What does self care look like for you?
I write 🙂 I started this blog to write down my thoughts on some of the Psalms I was reading and re-reading in April-June 2016. Since most of my posts are based on the Bible, I read and re-read the passages and then commentaries or studies on the relevant scriptures. This refreshes me in a way that I can’t fully describe. I love having 3-5 hours at a time to finish a post and then polish it later throughout the week.
Usually on Saturdays if Raj is not on call, we relax and make breakfast later, then I head out for a few hours while the kids are with Raj.
If I want to attend a conference or Ladies’ event at church, I generally go without the children and that counts as ‘my time’ for that week, so the blog writing gets pushed to the next week!
What hope can you give families going through the similar situation?
He is with you. You are not alone. He sees your tears and collects them and weeps with you. He hates, hates, what is going on. This fallen state of this world brings Him sorrow and grief and His desire is for everyone to be whole and complete, the way He’s made them.
He waits now, because His desire is to give time, more time , and still more time to those who have not chosen to accept Him and come to Him.
One day, one day, your loved one WILL be made whole. One day they will dance in the presence of God. One day they will laugh with joy and you will laugh with them. One day they will be understood and known completely and there will be no more struggle.
Until then, dear friend, you are not alone. You have friends and family around you (even if you don’t know it). Until then we will walk with you, understanding your sorrow and your needs. We may or may not be able to help you, but we will share in lifting your burdens.
If you would like me to pray for and with you, please let me know in the comments below.
What is your favorite worship song?
Let us know how you’ve seen God show up in big way in your life in the comments below.
Until next time,