My sister Syble has Down syndrome, so when our family goes out to eat or out anywhere, people notice us. Sometimes they stare. Sometimes they smile. Sometimes they just look away. Young children may ask questions or point. It becomes so expected we don’t even notice it anymore.
But our son James has autism, which can’t really be seen. Usually, it’s heard. If we go to the grocery store and he screeches, people look. If we’re at the park and he jumps and flaps, people notice. Depending on how loud he is or where we are, we sometimes get dirty looks or exasperated sighs in our direction. We’ve even gotten a few questions.
Last month James and I sat down at a potluck our church was having with another church. The lady I sat by gestured to James and asked, “Is he going to grow out of that?” I wasn’t sure what she meant. “His autism? Will he grow out of his autism?” “Yes,” she answered. Then followed up with, “What did you do when you were pregnant to make him that way?” In another conversation I had with a mom at my older son’s theater rehearsal, I was asked “Did you eat a lot of tuna when you were pregnant? I hear that’s what causes those problems.”
I don’t always know how to respond in grace to such questions. They remind me of a question Jesus’ disciples asked Him.
“Rabbi, who sinned, this man or his parents, that he was born blind?” (John 9:2).
What’s going on here, Jesus? Why is there suffering? Why do we have to see it every day? Why do we have to walk by it? Hear it cry out? Respond to it by either meeting the need or walking away? What is the cause of all this?
We assume they are still close enough for the man to hear this question. In verse six Jesus touches him, so they likely have this conversation just a few feet away. The blind man may have had the same question. If he had known who this man was who passed by and saw him that day, he probably would have asked Him the same questions. “Why Rabbi? Why God? Why this darkness? Why me?”
In Exodus 4:11 the Lord asked Moses, “Who has made man’s mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?” It is the Lord. And because it is the Lord who allows these disabilities, these differences, He must have a reason.
Jesus doesn’t answer His disciples with the cause of disability, He answers with the purpose of disability.
“It was not that this man sinned, or his parents, but that the works of God might be displayed in him” (John 9:3).
It’s no one’s fault. His parents aren’t being punished and neither is he. Many parents of special-needs children struggle with this. We wonder if it’s our fault. If we’re being punished by God for something we did or didn’t do.
Nancy Guthrie lost two children soon after their births. She writes, “There is a purpose for this suffering. Like many people who experience difficulty, I immediately made the assumption that my suffering was my fault, that all my sins had caught up with me and I was finally getting what I deserved.” And Amy Julia Becker, who wrote Good and Perfect Gift about the birth of her daughter with Down syndrome, says, “Penny is neither a rebuke nor a reward. She is a child, not a product of sin or of biological happenstance or of any lesson we needed to learn. No. This happened that the glory of God might be revealed.”
The very first Westminster Catechism gets right to the point of our purpose in life:
Question 1: What is the chief end of man?
Answer: Man’s chief end is to glorify God, and to enjoy him forever.
This man was born blind so his life would display the power of God. So his blindness would display the power of God. So his begging would display the power of God. So the very corner he sat on would display the power of God.
So in response to the question “What did you do to make him like that?” my answer is, “His life is a testimony of the power of God. He glorifies God. In his autism. In his struggles. In his flaps and screeches. In his triumphs and successes. When he tries a new food and learns to use the potty. When he is the reason our church now has a special-needs ministry.”
I’m learning right along with the disciples. It’s not about me (or the tuna I ate or didn’t eat). It’s not even about James. It’s about how everything in creation can bring God glory.
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My son is 13 years old non-verbal autistic. We are living in a place where there are no special schools for him and the ones that are there are reserved for locals not expatriates due to language differences. Our current financial position also does not allow us to move to another place to find schools for him.
My earlier question was:
“In heaven, will parents of special children who have gone through a lot of pain be rewarded the same as those who have enjoyed a comfortable life, both being believers?”
The reason I am asking this question is the way fellow believers treat us and their aloofness towards us. There are times when I have begged the pastors and elders to come to my house to pray on a regular basis, as we greatly fear his meltdowns.
But the reply I have got from our pastors and elders is that we should come to church. My son never even steps out of the house and it is a great struggle and fear to get him out of our flat even. They feel we are accursed and not want to even associate with us as they are afraid that some sort of curse will come upon them.
Jesus has let us live in this position and when I go to church (without my son of course) and seeing them in their holy dancing and singing, my heart is crushed. They have been so indifferent to my son whose life is wasting away and they seem to be so filled with the holiness despite being so indifferent.
I know that those who believe in Jesus will go to heaven as He is not a respecter of persons and that He has died for all our sins. But will it not break our heart to see these fellow believers who have enjoyed their life in earth and continue to enjoy in heaven whereas we were in so much desperation and fear and loneliness and dire need being given the same penny.
Please forgive me if I am speaking out of envy but it this issue is already there in my heart and had to come out anyway.
I have no answer to your questions, except I can relate to many of your feelings (e.g., lonliness, abandonment, envy, anger) toward people whose lives appear to be more comfortable and peaceful than we as parents of special needs children. You are not alone. I hope you can find support from other parents with special needs children in your community.
I so love you fellow mom. I honor you and your strength in raising your son. I cannot relate to having a child with your sons specific disability, but i do have a 16 year old with a combination of mental health issues, so i understand some of those fears. What i will tell you first and foremost is what i tell myself when something seems off and those nerves start to get shaky. For God did NOT give you a spirit of fear and timidity BUT OF POWER LOVE AND SELF DISCIPLINE. (2 Timothy 1:7) So when that fear comes up, fight it back with love. When fear comes, tell your son you love him. Hug him if you can. When that fear is creeping up, love him more than anyone else can. You are His mom. No one crabby Love him like you. Love him more than you fear him and those episodes.
As far as the church, i would suggest trying other churches. One thing about the love of God is that He loves families. He doesn’t exclude anyone that is part of a family. And every church should be modeling that (in my eyes) otherwise, they are not reflecting the true life of Christ. You absolutely need some support, especially for yourself as his mom. You should NEVER feel like you are accepted in church and your son is not. I want to make that perfectly clear.
In the meanwhile, find some quiet time, even at 5am (I’ve had to many times) and please pray for yourself and your son. Pour out your heart to HIM so He can cleanse your heart as HE sees your need. Be real about how you feel, just the same as you did here. Admit where you are hurting and afraid. They are valid feelings. But once you do that, allow your faith to break thru. Praise God for His ability to heal your son. Praise Him that He has a church close to you that will accept your COMPLETE family and ask Him to help you find it. Praise God that He is working things out for your good and your sons good! Praise Him that even tho you can’t see beyond the meltdown that probably just happened, HE IS getting glory in it because HE WILL work out out!! And know that this journey is not easy, but there is a purpose. You may not know it right now, but in time He will begin to reveal it to you. It will take time, but stay strong. I’m praying for you.
Thank you very much for this answer which has richly blessed me, a parent of an 18 year old daughter with multiple disabilities. May I share your response with other parents of special needs children?
My son is turning 8 today. He can’t talk and he gets frustrated at times. I have a hard time caring for him but I love him very much. Thank you for your blog. I am encouraged and I’m blessed.
Jai, I think you can look to the parable of the rich man and Lazarus. Hopefully this will motivate us to intercede for those who are indifferent to the needs and suffering of others. We are facing the refining fire right now of our child’s autism and the rejection of others. These people will also have to face this fire as repentance is not optional. I often think of how the disciples were huddled with the door locked for fear of the jews but then Jesus passed through the wall and visited them. He has done this for me when for safety reasons or hostility from others I have been trapped in my home with my two autistic sons. May you find comfort in His presence as He visits you. These are real painful wounds but it is best to look only at Jesus.
Em, Ana and Melanie
I just now saw your responses and was greatly comforted. Thank you so much.
Our God is a good God and just. He has not left us orphans in this world but has given His spirit. I am so encouraged that fellow believers also go thro’ similar or more painful circumstances yet have kept your faith.
Your advice of talking to Him early in the morning is very refreshing and I will do that.
As for my church, I shouldn’t be silly as there is a greater calling for us.
Reading your post, crying. .God help you..praying. .God heal your child…in the name of Jesus..
Oh, gosh, I cried reading about the insensitivity of people who have received unmerited love and mercy from a fearfully holy God. I am just about to meet with a distraught mum of a challenged child. Did not know what to say. So I looked up for answers and logged into your blog(?). Thank you for your honest but compassionate write up. I will use it to minister to this mum. She is a new believer
we stand aloof even though we speak of concern God knows why there are some who will have genuine loving intent but what can any one person do anyway it is Jesus and Jesus within us through the Holy Spirit Church is where we are not where we go Strength comes when we lay our complete all in the Lord who is all, all that said I understand how difficult it is to feel alone on the outside but only through God can we break through and I nor anyone can change what God has destined Love is the best we can do and Love helps not only our children but ourselves and all around us its funny but it seems as simple as what would Jesus do always thinking wwjd really is a key to living in love as Jesus would but we must do it first even if it goes without notice God already knows where our hearts are. There is always hope stay strong, breathe and believe we are loved our children are loved by the one who thought us into existence and that is all
In heaven, will parents of special children who have gone through a lot of pain be rewarded the same as those who have enjoyed a comfortable life, both being believers?
We can’t judge the lives of others. Scripture says in our lives there will be trouble, and that is true for all of us. What we may see as a comfortable life for others may not be the truth, and that comfort may not last forever. We have to focus on being faithful in the lives God has called us to.
I have a son with severe Cerebral Palsy, and I knew from the very first moment of his conception, how lucky I truly am. His CP was caused at birth. He went 23 minutes without oxygen. I thank God everyday for him. Incredibly smart, funny, kind, loving, and does it all nonverbal and uses his feet for everything. I wouldn’t trade nor change him for anything. See the blessing, not the fact they are “different or disabled”
Hi , I have a daughter who was born with a fatal disorder, (Trisomy 13) at 24-25 weeks of pregnancy. We had the most difficult decision to make, with the help of several ultrasounds that showed my baby’s anatomy was fully developed ( ten fingers/toes). I chose life while facing loss of interest and inconsiderate comments from my Ob gyn. My daughter has never seen or know me visually or able to speak to me, but 5 years later, I’m thanking God for His grace and mercy and allowing me to serve His purpose through the trials, ups and mostly downs, maintaining Faith and hope and the opportunity to love my lil earth angel..To all special needs mom, you’re chosen and your testimony will be your defining experience.
Very sorry to read about you’re son’s problem. I don’t know why this happens, what’s the purpose of the Universe in that. We just need to admit the fact and make the life happier and easier both for us and kids.
God’s love is real. God uses the sufferings for a purpose of his.
As an autism dad I find this to be quite infuriating.
I prayed to my god Oden. Son still has autism. What gives? Did I pray to the wrong god?
It’s tough to tell when there’s about 3000 of them.
This article is absolute garbage.
Didn’t your mother ever teach you – if you don’t have anything nice to say then don’t say anything at all? Since you know this lady is a Christian and believes in the God of the Bible (it says as much in the bio at the end of the article), if that is not the worldview you choose to subscribe to, then maybe HER blog is not the place you want to be. You are welcome to go find a blog that more closely aligns with what you believe to be true or to start one of your own, but to troll HER blog and tell her that her article is garbage because you choose to believe something else is just plain rude and uncalled for.
I don’t follow her blog – a fb page brought me here.
This article and world view are insulting to everyone with a thinking brain.
Read the bible and you’ll (maybe?) understand. I will vehemently stand up to anything that blames the parents for their child’s disability as a form of punishment. And that has nothing to do with all the other mind numbing stupidity of your bible (or any other religious scripture).
Cogito Ergo Sums Atheos.
She was saying why it is not the fault of the parents and supported it with scripture. I find it comforting, though I found I found out about our son when I was pregnant and this scripture helped me a great deal.
I totally respect that this isn’t your view but to those with similar beliefs, it isn’t garbage.
Dear Derek,
I think the purpose of the article was that the parents are NOT to blame . . . and that God can work His purposes even in the midst of a broken creation. It’s difficult to live with the challenges of an autistic child. You (we) face unexpected situations daily for which we “didn’t sign up.” I hope you have an encouraging community of folks — spouse, siblings, neighbors — to help you with the struggle.
Derek, perhaps you need to read the article and understand it before jumping to the obvious wrong conclusion. I hope your critique of the Bible goes into greater study and depth before you make another misplaced conclusion.
In Australia we have saying that would apply to you; ‘you’re a tool mate’.
K
Very powerful insight. Thank you. I blame myself sometimes for my older son’s autism. I did eat a lot of tuna fish. Your words encouraged me.
WOW, now when I am being accused of being filled with devils and that is why things are as they are or my son being Autistic … I will just send this link to them. Thank you!! God is powerful, loving and kind and I have seen it in my own life of 47 years and that of my beautiful son of 6 and half. He was born Autistic with Apraxia (not able to speak) and with grace from above and hard work on his side, started to talk in words beginning 2016 and now have 8 word sentences. 2017 promise to unfold more of God’s miracles in our lives!
I just want to express my gratitude to you for this article. I hardly ever cry over my sons disabilities (perhaps I should, as it’s healthy to cry sometimes). This new perspective made me cry happy tears.
I have spent the past 9yrs blaming myself for my sons premature birth. I was young, ignorant, I didn’t do everything right. I even put off seeing my doctor at 20wks when I began having contractions because I didn’t think it was possible that my back pain was actually preterm labor. He spent his 1st year in the NICU. As a result, he is classified as having multiple disabilities; from vision, hearing, to autism and SPD. He has pulmonary hypertension and chronic lung disease & he gets sick at the drop of a hat. He’s sick right now and when he is ill that is when I can’t help but feel guilty for all the challenges he faces in his life. He is an extraordinary boy who is my miracle. My proof that YHWH hears my prayers.
Reading this article just now has helped me to remember that my son’s disabilities are not my fault, or punishment. His amazing disposition, strength, and continued growth is a representation of our father in heaven.
❤️❤️❤️
Thank you for this. I am a homeschool mom of 2 special needs children, and sometimes I struggle with keeping my eyes on the Lord. This article was a great reminder about where my focus needs to be.
Thank you for this post. My wife and I have a son with autism. We have often been asked similar questions. He is almost always right there with us, fortunately, he has not paid attention to the person asking the question. We know God created him for a purpose and are excited to help him learn his mission for the Kingdom.
I am an autistic adult and I am using my autism to glorify God. I write several blogs on the internet telling my autism story. I am saddened to see that there is a lot of ableism going on in the Christian community and in the churches as well. Sometimes they, even the world, treats us autistic people as less-than, Othered, and want to eradicate us, bully us, make fun of us, and torment and tease us. That is not right. What is right is being treated with kindness and respect. As an autistic Christian adult, growing up I was misunderstood, misjudged and misrepresented. I am thankful for your blogs, Sandra, and I really like the stories about your son.
My husband and I raised four children, and then adopted four more. The four we adopted all have special needs or diagnosis of varying kinds.. One has a diagnosis of Deaf/blind with autism and developmental delay. (Profoundly deaf, legally blind ((blurry blind)) with cortical visual impairment). He is ASL dependent, but largely non-communicative. His disabilities turn some heads.
I have been asked: “What is wrong with him?”, I answer: “nothing. it is not wrong to be different”.
With another one, it isn’t always obvious that he has a diagnosis, but when it matters, I have taught him to say: “I need a little extra help with that, thank you”. My youngest one also has autism, but with the help of early interventions, he is quite sociable. He has learned to say: “I have autism, that is how the Lord made me, so I am just fine.” We focus on what they CAN do, and downplay what they cannot do. We are so blessed to have these young men in our lives… sometimes we are ‘blessed and stressed’, but the blessings outweigh the stressings.
I would love to republish this post in the online magazine that I manage – Spirit Led Woman.
Thanks so much for sharing this perspective. I was particularly struck by the fact that someone in your church, in this day and age, would ask such a question. We, too, have a disability ministry, finally! Although I will say that we were not that advanced when my son was younger. Great work you are doing, and I love putting disability in the context of God’s grace. No one can fully understand the joy of rearing a child with special needs and how that joy somehow manages to dissipate the challenges. We are blessed to know God’s heart and to have the capacity to see His heart and mind through out children. Will post your post on my FB as I, too, hope to reach more families, and in doing so, bring them to a deeper understanding of God’s calling on their lives and the lives of their children.
Sharon, my pastor and I were just brainstorming yesterday how to start a special needs ministry in our church. Could you share with us how you started and some of the challenges you had to over come.
Hi Jeanne,
My church specializes in the special needs ministry. Our head pastor has a special needs daughter. For that reason, we not only have bible classes for them while we parents attend the service, we also have a respite housing so are parents can have days to spend with the other members of the family. We have respite events during the weekend, camp, adult care, and camp for ages 18+ with full-time nurses at both camps. Please call McLean Bible Church for more information. They arevery interested in helping other churches start this type of ministry. Their website is mcleanbible.org.
Thought I would let you know I enjoyed reading this. Everything you wrote about is so true.
After having 2 normal, healthy children and 2 with severe birth defects, causes unknown, and participating in Henry Blackaby’s, “Experiencing God,” twice, I felt God was wanting me to write about the subject of churches and special needs ministries.
Our pastor said, “God doesn’t want you to start a special needs ministry, you do!
I replied, “God doesn’t want me to start one, He wants me to write.”
I’ve done this through the years, and whenever I’m through I’m just going to give a copy to friends and family.
God didn’t allow me to have 2 special needs children for no reason at all.
I just wanted to share this with you.
Keep up your good work!!!
This is so encouraging thank you Sandra Peoples. I have gone through the same, kids being scared of my Jojo because at one point is pupil was all the way below all you could see was the white part. One day after service an elderly man came to me and said oh glory to God this baby has improved, i couldn’t look at him twice!! I got home and asked my husband how bad Jojo looked. But it is all for the glory of God. Thank you again.
Dear Ms Kristy, Please do not stop writing, indeed God gave you those two precious children for a reason such as this, to encourage and uplift us and many others. I used to sulk and shut myself in but when i read about mothers with two or more special precious babies as i call them, i drag myself up shake the dust off my skirt and praise God and write.
May Gid continue to shine His heavenly sunshine on your families and pour more grace and favor.
Oh by the way, that ministry you wanted to start, you surely will do it one way or another.
Thank you so much for sharing, Kristy. I have cared for a Downs sister-in-law for 42 years and an adopted daughter that has multiple disabilities for 39 years. My sister-in-law passed away one year ago. She was such a blessing to me and my husband (her brother). The rest of the family just don’t know what they missed by ignoring her all her life. She would have been 70 years old if she had lived two more months. We adopted my daughter when she was 8 months old. We knew at the time that she was blind with the possibility of mental retardation. Turned out not only is she blind and mentally retarded, but she also has cerebral palsy and has symptoms of Autism. I am well aware of how people react to her yelling when we are out. She does not do it every time and I never know what will set her off. People just don’t understand and are always telling me I need to find a place to put her. I know that I will have to someday because I am getting older and won’t be able to care for her; but that day is not here yet and, God willing, it is still many years down the road.
I have one born with a disability and I know it’s not my fault. But my adopted son was born addicted to Meth and Crack. I can’t believe that was God’s purpose.
The meth and crack addiction is a result of someone else’s sin, but his life and what’s is able to do can bring glory to God.
There is not necessarily a reason for a disability and not all children with special needs glorify God. I can’t believe in a God that would create an epidemic of sick children with severe neurological damage who are disadvantaged, vulnerable to abuse, (many are abused), left to die in buses and bullied mercilessly in schools. And yet it’s happening now. This is not God’s creation. Disabled children/people have never been considered as any real part of society; many millions over time have lived destitute and depraved lives, lived in institutions and died there. This is the same God who we all claim created some purpose, a God who wants us to have joy? I’m sorry, this article just gives parents more false hope in a cruel, cruel world. The truth is that sometimes, genes don’t form properly. Time and chance for all things. Not necessarily a purpose in any of it and certainly does not glorify God.
Are you kidding me?False hooe? No, real hope. Just look at all the sickness, and chaos in the world. Is that from God too. disabled children are loved despite the horrors of insensitive, cruel people who think it’s “genes” only. Every Christian knows “all things work for good to those who love Christ. The message of love is evident in the courage and strength they display every single day of their lives, so much more than I can say for “normal” people-whatever that is.
Thank goodness for your response. I was almost ready to throw my phone out the window.
Very powerful testimony. Very encouraging. I have an 18 year old son with autism. I still grieve. Thank you. ~Vanessa
I agree with Sandy – I was gang-raped between the age of 2 and 8 years several times, I saw a murder at the age of 5 and the list go on and on …. it was not God’s wil but those people stepping outside His will. However, God has turned those moments of horror against me, into my strength of today so that I am a living witness of His love and patience! Though I have PTSD, and have to work hard every day to remain healthy, I live a full and happy life. Not because I am cute or perfect, but because He is WHO He IS! I shared above about my precious autistic boy being born with Apraxia – I had the dates 2016 and 2017 – I live in the future I see ha ha .. should have been in the beginning of 2015 and that 2016 promise to unfold more of God’s miracles. My hubby and I being Autistic too – but only found out the year after Theo was diagnosed. People step outside the will of God all the time (including me), but God is faithful all the time. And the precious child that is with you who has the effects of his parents stepping outside the will of God, is no longer with them, but with you who can bestow love and kindness and patience on him (all that comes only from God and not from us) and love will let him soar above the effects these chemicals had on his body. Do not think of what has limited him, think of Who is the Lord of lords and King of kings and able to form life form dust, how must more can he do with the limitation formed by chemicals