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Grieving for my special needs child

For a while, it has bugged me when a pregnant woman, when asked if she wanted a boy or girl, responded “I don’t care, as long as it’s healthy.” Because I had seen couples welcome babies who were definitely not “healthy”, but of course they still loved their child with all their hearts. So in my self-righteousness, I looked down on those who answered “as long as it’s healthy”. Until I had been a mother myself for several years. My first two children had both been born healthy and “perfect”, and were even relatively easy babies. But then as my son grew, we saw signs of problems. He had a speech delay, which we found was due to a hearing issue (later corrected with ear tubes), but there were other issues which seemed to point towards something more. Over time, it became clear that he is on the Autism spectrum. He’s pretty high-functioning, so while it is sometimes difficult, our lives are still pretty normal. And for a while, this actually increased my self-righteousness, since I had a child who while physically healthy, was not your typically “perfect, healthy child,” yet of course I loved him! I must be so much better than those people who replied that they only wanted a healthy child.

But then I realized that I was not all sunshine and happiness when thinking about my son. I frequently felt sad, stressed, guilty, worried, frustrated, overwhelmed, and so much more. And somehow humility struck me, because I found myself grieving for the loss of some of what I had imagined for my child. I realized I was sad that he was already having great difficulty learning to read and having trouble with his classmates because of his difficulty in social interactions. And I was sad because I knew those difficulties would continue, and others would come. And I realized without even being aware of it that I had imagined my children would be healthy, normal kids and grow into healthy, normal adults. While I was feeling superior to those who voiced the hope for a healthy child, without realizing it I had simply assumed that my own children would be healthy. And it hurt to give up that assumption, to change my image of what my kids would be as teens and young adults and parents themselves. I had to realize that not only would they all face the typical challenges of life, but my son would also face special challenges. And my husband and I would face special challenges in raising him.

And that kinda sucks.

I don’t want to spend time searching for ways to help him navigate a world that sometimes doesn’t make sense to him. I don’t want to deal with Special Ed providers at his school, or with the additional parent-teacher meetings needed to keep track of where he needs extra help, or with the extra time at home helping him. I don’t like having conversations with him where I have to explain basic social reactions when he just doesn’t understand why his classmates react a certain way. I don’t want to be a “special needs mom,” but I am. I wouldn’t choose any of those things, but I do them because I know he needs them, and I’m his mother. I have friends who deal with much greater issues with their children, and I’m willing to bet they don’t want to be a “special needs mom” either. I think any mother would prefer that her child not have to face the big or small challenges that come with having special needs. A mother naturally wants to make the road smooth and easy for her children, to watch them grow and succeed rather than stumble and struggle.

So I’m sad sometimes. I grieve the loss of the image of a normal, healthy life for my son, and I grieve the fact that his extra needs make my job harder. While I certainly love him no less, part of my mind says “I wish he were healthy,” “I wish we didn’t have to fight to get closer to normal,” “this stuff is a pain in the….uh….rear.” And that’s okay. While I still don’t like it, I don’t judge them so harshly when new parents say “as long as the baby is healthy.” And I don’t come down so hard on myself when I am sad that we have to deal with this. It is a loss. A loss of some of my hopes for my child and myself, a loss of our time and effort and energy, a loss of the ability to share my time and attention more evenly among my children. I’m allowed to grieve for the difficulties my son will face. And so are you.

I’d love to hear how having a child with special needs has impacted your family. Have you grieved the loss it includes, as I have found myself doing? Have you felt guilty about that sadness, as I frequently do? Share your stories in the comments section.

About Mary S

I am happily married to a wonderful man and mommy to three great rambunctious kids. I am blessed to stay home with my kids and also work from home doing sewing. As a cradle Catholic, I grew up in the Church and went to 12 years of Catholic school, but may have learned even more about my faith in the four years of liberal colleges surrounded by people who challenged my beliefs and sent me to research what I believed, and more importantly, WHY! I love reading and learning about just about anything, but also love just sitting back and tickling my kids until none of us can breathe!!

  • Alicia - We have had to set aside our expectations for the future with our daughter’s diagnosis. Accepting the reality that she might not get married and have children, or be able to pursue a religious vocation– that’s involved grief on our part.

    Really–that letting go is something we should do with all our kids, regardless, since God’s plans don’t match up with ours all the time. We can only love them the best we can and trust! Thank you for sharing your thoughts. <3April 24, 2017 – 8:23 amReplyCancel

    • Ana Larson - Good words to remember, all of what we have is on loan from God let us just do the best we can, love it and ultimately we must ask God to perfect it anyway and let it go. Blessings!April 26, 2017 – 12:32 pmReplyCancel

  • Jessie - I needed to hear this today. To hear that it is hard to have even high functioning kids on the spectrum. We have had challenge after challenge from the ‘typical’ school system with our eldest. We became so frustrated we brought him home to homeschool. I see the disconnects and we cope bit by bit now but it frustrates me how most of his previous teachers wrote him off and gave up. Why is it only the ‘healthy/normal’ kids have a support network and anyone with challenges has to fight for a support network. I feel guilty about the days I want to give up and the days we spin our wheels.April 25, 2017 – 7:20 amReplyCancel

    • Ana - I have come to expect little from a mediocre school that can only give certain things, it is done by mediocrity and nothing more or less can be expected. Those things done with God have greated promise, you have been called to homeschool, truly and blessing, enjoy the journeyApril 26, 2017 – 12:34 pmReplyCancel

  • Christy - I am just beginning this grieving process. For most of the last year since our son’s diagnosis, I just tried really hard to not be sad and “look on the bright side.” Turns out that doesn’t work forever! It is tremendously hard to acknowledge and accept the very different reality and future for special needs kids. But it has to be done, and turned over to God, just as it does for our typical kids. Thanks for writing this!April 25, 2017 – 10:05 amReplyCancel

  • Erin Hayes - Thank you for this article and your vulnerability. We experienced a similar grieving process when we found out (while still in utero) that our daughter has T21.
    My sole consolation has been that she is the gift God intended for us and HE must have reasons. The months since have been a bit of a baptism by fire but we wouldn’t trade her for the world.
    Another Mom from Church told me that with their daughter’s genetic abnormality she was comforted when someone told her that
    “God must love you a great deal to want you to stay so close and depend on HiM so much”April 25, 2017 – 10:51 pmReplyCancel

  • Eva - Our oldest son had multiple food allergies, delayed development, behavioral and sensory issues – at the time there was not as much knowledge about autism as there is today, but it was obvious that he was not like other kids. He would fly into rages and I still have a scar on my forehead from where he threw a D battery at me at age three. Truly, at the time I wondered how either one of us would survive. So – I understand your struggles. The good news is that today he is a brilliant and productive adult with a degree in neuroscience and a good job. Also good news is that my compassion for others grew in ways that would not have been possible without the challenges of those long ago early years. God always has a plan, and it is always greater than our own. I will be praying for you.April 26, 2017 – 9:16 amReplyCancel

  • Dawn - I grieve for my 2 children that they live in a world that will reject them, avoid them, not want to be them and even thank God they aren’t them.  I grieve that people feel sorry for me because I’m a mother of special needs children, because they should not.  My children shine the Light of Christ so brightly and it’s those that will not see it who should be pitied.  I don’t have a “normal” (whatever that really is) parenting experience and worry about their future when I am gone, but God blessed me with them. Yes, blessed me! I feel unworthy to be be their mother most days. If your parents grieved that you were born a different gender than they wanted, or that you weren’t as pretty as they would have liked, or that your temperament was hard to live with…how would you feel? What if you had been born with a disability and your parents ‘grieved’ you?  God rejoices over our special needs kids, maybe even more so because of their innocence and their suffering.  I take solace and get strength from Our Lady who had a Son who was rejected by men. These children are eternal and they are here to teach us.April 26, 2017 – 9:21 amReplyCancel

  • Robyn - Robyn – I have been blessed with two Special Needs children. Our life is not the “norm” whatever that is defined as. My oldest child is DD and has multiple health issues, that require multiple trips to Children’s Hospital two hours away. We also, have regular lab tests in between. At first, OC was in public school for PT, OT, SPT, and Cognitive Therapy. However, there reached a point where this was no longer in OC’s best interest (bullying, no academic progress in 3 years). The school had labeled OC and given up. I quit my part-time teaching job and brought her home to homeschool her. It has been a great blessing to see her advance academically, and love learning. My youngest child is severely allergic to many things environmentally and food. YC has been diagnosed with Unstable Mast Cells which can release a life threatening histamine reaction at anytime for any reason. The Mast Cells also trigger a generalized anxiety disorder and extreme OCD. YC is also homeschooled. I carry YC’s meds and epipen everywhere. Both children do so much better being homeschooled, as I can pace everything to their “good days” and “bad days” and behavior issues. This is our “norm”. It is my Catholic Faith that helps get me through. On difficult days, I pray “Lord have Mercy”, “Jesus I trust in You” and I often call upon the angels and saints to pray for us. Yes, it is challenging, but I have come to trust that God has a reason for all of this. I have felt sadness for what the future might hold for them, because I want the best for my children. All I can do is to do the best I can to teach them, help them to survive in the world, and pass on our Catholic Faith to them. I want them to know that they are loved very much.April 26, 2017 – 5:54 pmReplyCancel

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