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Who Is The Best Person To Help My Child With Special Needs?

I find myself questioning my choices as a mom all the time, asking – Who is the best person to help my child with special needs?


We did it again this week.

My son completed a second round of IVIG

It was a lot more difficult this time. The actual procedure itself and healing time after went very well. But the lead up was really hard, for both of us.

He struggled with anxiety.

I struggled with anxiety.

He wondered why he has to get poked every single week for the rest of his foreseeable life.

I wondered how to help him accept that he has to get poked every single week for the rest of his foreseeable life.

Who is the best person to help my child with special needs

The night before, I found myself feeling a little overwhelmed and desperate.

Not over any one thing – over all the things.

Mostly, I was freaking out a bit about having the be the one in charge of the infusion. 

It is a step by step process, involving a syringe, tubing, more tubing, alcohol prep pads and a single dose of medicine that costs more than we make in a month. All must be painstakingly connected, piece by piece, and finally put into a pump that manages a careful flow.

The process essentially ends with me putting two separate needles into my son’s belly, and then watching him for any side effects or major issues for the next 3-4 hours.

So yes, I was freaking out a little.

Again, not over any one thing – over all the things.

Who is the best person to help my child with special needs

I texted a close friend of mine who happens to be a nurse. She knew immediately, despite my half-hearted attempt at humor over the situation, that I was not OK.

Her response is what I want to share you with you today.

This is going to be hard at first, but you will get the hang of it. I’m sorry you have to do it and I know it is scary. But if there is anyone in the world that is going to be careful and meticulous with your son, it’s you.

 

It changed my whole internal debate.

Of course I would be much more careful, much more concerned and much more committed to his care. I am his mom.

Who better to do this every week for him, with him?

I am exactly the person for the job.

Who is the best person to help my child with special needs

Who Is The Best Person To Help My Child With Special Needs?

Maybe you are in a situation like ours, struggling with a new medical treatment or procedure that has your heart in your throat.

Maybe you are trying to figure out if you will be homeschooling this fall and how it’s all going to work.

Maybe you have to change your child’s doctor, again, and you are not even sure where to begin.

Maybe you have no idea how to make it through another day, as your child’s anxiety, sensory issues and explosive behavior seem to increase, no matter what you do to try to help.

No matter what your circumstances, please hear me when I repeat my sweet friend’s wise words.

This is going to be hard at first, but you will get the hang of it. I’m sorry you have to do it and I know it is scary. But if there is anyone in the world that is going to be careful and meticulous in figuring this out for your child, it’s you.

You are your child’s mom for a reason. There is a plan and a purpose in all of this, and you are right in the middle of it with your sweet son or daughter.

You really are the very best person for the job.


For more resources, support, and encouragement:

To The Mom Crying In The Parking Lot

Working with doctors when you homeschool

When The Child Who Needs Structure Fights It The Most

 

 

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7 Comments

  1. Thank you! Reframing the hard with your friends perspective is making a difference. ❤️??

  2. beautiful, I am so glad you have a close friend that could speak into your life right when you needed it!!! And now you have spoken into mine, and while it is refreshing, it doesn’t change the hard of 4 with special needs, and SO MUCH uncertainty in their near future, and sometimes, I am just SOOOO weary of being the MOM who cares, who gets their quirks and behaviors and attitudes and KNOWS why they are exhibiting. Sometimes I just want a break from CARING so stinking much:(

    1. You are not alone. I texted a friend yesterday after a dr appointment that was “fine” I got a pat on the back and told again what a great job I am doing. But I got no help. No insight. I told my friend l “ Instead of being happy that I’m doing the best I can, in fact the best there is, I’m just angry that no one can do better” and it is true. No one can. Cause I’m the mom. But this mom is tired of doing all the things, all the time, and caring SO much. Hugs ❤️

      1. “Just angry that no one can do better” – such a great comment. I am sitting here talking about camp and school and feeling resentful that no one can understand and help my son like I can. Just ….need….a …..break! I love my “job” most of the time, and I do believe he landed with me for a reason, but dang….so tired.

    2. I am the homeschooling mother of 6 amazing children who all have differing and varying special needs. Our lives are different… across the board. We get a lot of push-back from people and we have no outside support. It is a lonely road to walk… but I have prayed and asked my Heavenly Father His point of view and opinion about why and how our lives have to be different. He has assured me time and again that, “Yes… 6 children really are THIS important!” Thank you for always sharing your beautiful perspectives! This is important work and He will sustain us through it!?❤

  3. Crying. Because while I don’t have to deal with all the medical intricacies you do (thank you Lord) I feel so overwhelmed and like I’m doing a terrible job everywhere, helping my son mostly, but even being the best mom to my other boys, being a good employee, friend, neighbor etc…I don’t have many (Who understand) people I can talk to in my life…thank goodness. Can read you blog and other moms comments and feel a little less alone and helps give me courage to keep going forward, cause honestly, lately giving up seems to creep into my mind a lot. Thank you for sharing…and thank you other moms for sharing too. ❤️

  4. Sorry for typos! Typing on my phone 😉 yes, while at work ? and crying too! Thankfully, my door is shut…getting back to work now

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