Confessions of a special needs parent: the hard things

I  came across this confessions from a special needs parent. It brought tears to my eyes. I have struggled with every single one of these! Except Sweet 1381335_511812385580777_1575068220_nBaby doesn’t have siblings or he hasn’t been diagnosed. But we still had to go through a grieving process. We had to grieve for the child we thought we’d have. We wanted to be able to fully love our Sweet Baby for who he is-flaws and all. Just the way Christ loves us. We’ve been through that process-we still have rough days when I’m like-hey?! I thought I already dealt with this. I knew parenting would be a challenge, but I never realized I’d be a parent to a sweet baby with special needs. The challenges that come with that are like a strong tidal wave coming at times we least expect it. It endangers us to give up, to lose hope. But we never will. The Lord is our strength to get through the day. You don’t know how strong you are until you fully have to rely on Jesus to give you the strength.  Like my favorite verse says: “He gives power to the weak, and to those who have no might He increases strength. Even the young men shall utterly fall, but those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.” Isaiah 40:29-31

Lord increase my strength today!  I found this confession on Ellen Stumbo‘s page. I just LOVE the tag line: finding beauty in brokenness. Below is all her thoughts but anything italicized is my thoughts & expanding into my personal confessions. Please check out her page!

Confessions of a special needs parent: the hard things 

The love for our children compels us to stand strong against the tide crashing against us: the stares, the school system, the medical billing, the ignorance from other people, or the lack of support. And although we stand strong, we get tired, sometimes we are barely keeping our feet planted and we fear the tide will finally defeat us and wash us away. So we reach out and hold each others hand. Because we know together we are stronger, and because we need someone to stand with us, we cannot do this alone.

We face challenges. There are hard things about parenting children with special needs.

Social isolation:

  • We don’t want to be isolated, yet sometimes because of our children’s needs we find ourselves alone. We want friends. We need friends.
  • It’s amazing how isolated I feel despite the fact I’m NEVER alone. Between his many therapy/doctor visits and needing to do everything for Sweet Baby, I’m never really alone. Even now as I type this, it’s supposed to be Sweet Baby’s alone time to play by himself, instead I’m typing one handed because he just needed his mama. It’s also isolated not knowing anyone in the same situation-somedays I feel so utterly alone in my experiences. Thats starting to change as I meet families through the vision center we visit weekly. 

We feel like we are not doing enough:

  •  Deep down we often wonder, could I do more? Could I try harder?  Am I really doing all I can do? Sometimes, we have an overwhelming feeling of failing at everything we do because we don’t have enough time or energy to do it all. We feel like we are failing with our kids, failing at our marriage, failing at keeping a neat home, failing at our jobs.
  • Oh my if you could be in my head when these struggles come on. I constantly batter myself that I’m not doing enough. I’m not doing all his exercises that help him. It’s my fault he isn’t walking. It’s my fault he doesn’t know how to transition. It’s my fault he doesn’t hold his own bottle. I’m too lazy. I feel sometimes I’m so wrapped up in his exercises I forget to take a deep breathe and enjoy Sweet Baby. Because even though at times I feel we are stuck in the same routine-this season will too pass.

Siblings:

  • At times, we feel like we are cheating our typical children from having a normal childhood experiences. We feel torn, and we fear that our typical children will feel less important or forgotten.

Comparing our child to typical peers:

  • We try not to compare, but sometimes it’s hard not to notice how different our children are to their typical peers.
  • This one is in my hardest. I call it my struggle with the jealousy monster. Me comparing Sweet Baby also causes me to isolate myself. When its just us-I don’t realize what I’m ‘missing out’ on. 

Lack of communication:

  • It is hard when you cannot understand your child because of a speech delay,  it can be frustrating when you cannot have a conversation with your own child. The lack of communication also affects other social interactions and the forming of friendships. It is especially hard when your child is non-verbal.
  • Right now Sweet Baby is non-verbal. it’s a daily struggle trying to figure out what he wants. You can see he wants so badly to be able to tell us. As a mother, not being able to help her baby is like a knife in my heart. It’s the hardest struggle. The jealousy monster comes out with this aspect too. Seeing other moms being able to have a ‘conversation’ with their little ones. Seeing the littles ones going up to their mommys and just plain out saying, “I want . . .” To heard words come out of their little mouths instead of grunts and screams of frustration. We are working on a picture schedule and sign to bridge the communication gap, but he still only does his 2 signs. He understand more signs but he only signs eat/drink and more, which are very important. 

Others:

  • It is tiresome when other people throw judgment at us.
  • It is insulting when people hint they could do better and that our children’s behaviors are a result of poor parenting.
  • The constant battle with schools, doctors, insurance companies, etc, is exhausting.
  • Some people don’t even give our kids a chance.

The future:

  • We worry about the unknown, what the future holds. What will happen to our kids when we are not around? And how do we let go?
  • I don’t even want to think about the future because I don’t know what the future holds and honestly I don’t need to know. I just know the Lord has Sweet Baby in His hands and He will take care of him. When fears of the future loom: fears of will we have more kids? What will happen if we have more? Fear of what if something happens to me or my husband. I take a deep breathe and remember: “Be still and know that I am God.” Psalm 46:10

Dealing with the diagnosis:

  • When we fist received our child’s diagnosis, we had to grieve the loss of the child we thought we would have. Once we deal with the diagnosis, we still have to deal with the everyday realities of our children’s’ needs.

We want you to recognize the hard things about parenting a child with special needs, we hope that someday you will understand what it is like to walk in our shoes. Ultimately, we want you to stand with us, because when you do, you will see that we are courageous, funny, compassionate, resilient, brave, flexible, forgiving, generous, and so full of love. And we want to share that with you too.

~   ~

These thoughts come from the dark moments of doubt and fear. Those moments when I forget that I know the Creator of heaven and earth and He has a plan for me. I need to remind myself: “being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.” Philippians 1:6  Soon I will make a list of the special things of being a special needs parent.  Because there is such a beauty and peace about Sweet Baby, I want you to know that about him as well.

~Our Sweet Life~

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2 thoughts on “Confessions of a special needs parent: the hard things

  1. I don’t like the implication of “broken-ness” that is included in this post. The rest is very positive, as it should be. Your child has been given to you as he is- not broken, just different. It is up to you to nurture and cherish. The slowly developing brain ail surprise you as the years go past. The baby is not the adult and many of these different children becoming amazing adults. Best wishes!

    • Thank you Leith for visiting and for your encouraging words. Yes a great reminder that our children are not broken. This post was mainly to share the gritty, confusing feelings we feel as parents of children with special needs. Please come back and visit us again.
      ~Our Sweet Life~

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