Medications and Treatment Options — 5 Minutes for Special Needs

Medications and Treatment Options



                               

Hi you guys!

This is basically my week again…only different surgery on the stomach…I’ll update you later…

 

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I get tired–the kind of tired that makes your bones ache.

Sometimes, I get grumpy too.

Hey, don’t we all?

In this ever-winding road of special needs parenting, I find myself often in a place of worry—of frustration.

Nothing seems to go right. Ever.

If there were 2 possibilities–say, vanilla or chocolate–Jack would somehow end up being banana. Even if there was no possible, plausible way for that to happen, it would.

So, you would think that I would be surprised when weirdness happens. I’m not. Not anymore.

I think I’ve begun having out of body experiences. Really. It’s like, I hear what people are saying and I’m standing there looking at myself shake my head and smile, while inwardly, all I really want to do is curl up in bed and cry.

 

My Mother: “What is going to happen? Who will keep Big Child? Shall I bring a casserole?”

My best friend: “What is this kid going to do NEXT?”

My husband: “I probably have to work, so…”

 

 

Jack’s stoma ate his feeding tube. Literally. As in, he is having surgery to remove his feeding tube because no one can get it out manually.

I’m not freaking out. I figure, it is what it is. My child is unique. Very unique.

I get asked all the time…”How do you do it?”

I’m telling you…out of body experience is the way to go. But you can’t tell non-special needs parents that without them wanting to have you committed. My answer is usually the same to everyone—I do what I have to do. You take your kid to soccer and to playdates…I take mine to doctors offices and surgery.

What do you do to relieve stress? How do you manage when the chips are down?

(as I write, I have a cup of coffee, 3 Hershey kisses, and I am really contemplating going to the store for gelato!)



                               

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Insurance Advocate: Why You Need One and How To Get One

Remember that list of caseworkers I told you about? Well, in my haste to count on all my fingers the number of caseworkers in our life, I neglected one very, VERY important caseworker / liaison we’ll call “Miss W, The Insurance Gal”.

I could tell you a lot about “Miss W, The Insurance Gal”; give a number of examples of how this woman has made our life easier, insurance more accessible, has caught mistakes, gained us two more IVIG treatments (yes you heard me, two more) that she said was ‘owed’ to us. I could tell you about how she singlehandedly has the Children’s Hospital working for HER (thus for us) to get more approved…I can tell you just how much I want to squeeze this woman with shoulders a little less weighted…but instead, I want to encourage you should get one.

Read the full article →
 


                                       

The Hardest Word I’ve Ever Said

Seven years. Over a thousand hours at hospitals and specialist appointments. Countless interventions at home. And it turns out the most important word to help my daughter’s treatment is this:

NO.

No… we’re not doing a nineteenth round of medication adjustments. It’s time for hospitalization.

No… I won’t take her home from the hospital and keep doing the things that haven’t worked in the past.

No… I won’t take her home, period. She needs more help than we can give her. It’s time for residential placement.

No… We’re not going to let her case be assigned to an intern at your teaching facility.

Read the full article →
 


                                       

Helping Siblings Deal with “Survivor” Guilt

A month ago my 8 year old entered a residential treatment facility. Three weeks and 6 days ago, my 9 year old began to feel horrible about it. No matter how hard things had become at home with her little sister’s behaviors, her absence brings anxiety. Partly because said 9 year old has challenging behaviors of her own due to a shared traumatic foster care history. And partly because she just doesn’t know what to do with the new peace at home.

Questions and worries circulate in her mind every day:

  • Should she grieve the absence of her sister?
  • Is it okay to feel good that she’s gone for a little while?
Read the full article →
 


                                       

Waiting for Treatment

I want to write to you to tell you all the positives that can come from special needs, or rather, what we learn and how we grow as individuals raising children with special needs. I want to give inspiration rather than sorrow, the promise of a rainbow after the clouds. But I can’t. Not because I’m swallowed with sadness, I’m not, but because I’m confused.

We’re at a point where I know what to do, yet don’t know what to do. It’s an odd place to be. J has good days where his articulation and ability to have conversations is surprising, making me take a step back.

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The Value of Life.

…”The hard part is trying to answer the questions Walker raises in my mind every time I pick him up, What is the value of a life like his — a life lived in the twilight and often in pain? What is the cost of his life to those around him? … If Walker is so insubstantial, why does he feel so important? What is he trying to show me?”

-excerpt from Ian Brown’s Memoir “ The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son“

It was this passage of the book  The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son that first stopped me.

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Not All Diagnosis’ Fit in the Same Box

The problem with diagnosis is….

It puts people, individuals with likes and dislikes, quirks, needs, abilities and disabilities in a box. Cutting out their very individuality that makes one person differ so entirely from another. The differences between them no longer seen. In essence treating one person with an ability within a diagnosis the same as the person without an ability within that same diagnosis.

Take services. Epilepsy can cause a number of images. Friends falling to the ground with Grand Mal Seizures is the most common image people conjure. But two people with epilepsy can look vastly different. There are Grand Mal seizures, clonic-tonic seizures, absence seizures and an amazingly large number more.

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Raising a child with two competing special needs

I silently nudged her in the darkness. Slipped her out of her top bunk. Wrapped her in a blanket and ushered her to the van.

Maybe if I didn’t wake her just yet, she’d forgive me, I thought.

The sun wasn’t up yet, but I’d already been up most of the night, fearing the next few hours. The bag was packed with coloring books and snacks for later. My mind anxious for the morning and what the rest of the day – the week, even – would be like.

Because the hardest thing about parenting my daughter is walking the tightrope between her two special needs: attachment disorder from early life in foster care, and profound developmental delays from being FTT as a toddler.

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Botox Dip

My son had his Botox treatment this week.  I knew about 2 weeks ago it was needed.  It’s funny how that works.  At first you think, is it worth it?  Am I doing it for him or for me?  Actually, both.  I do it for him. His spasticity is so severe, he could curl into a ball, despite my stretching him daily.  He receives it basically from head to toe… I do it for him because it loosens up his shoulders and chest to the point we can move his arms around, up and down, stretching out the elbows…we must, we must, we must increase our bust. 

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holiday traditions…where are you???

I’d like to appoligize first.  My weeks have been just flying by and I again forgot to get my post posted.  Feeling like an airhead right about now!

Easter is on my brain today…It’ll be here before I know it.  What are your traditions?  Do you do anything special for your kids?  Have you made your own tradition?  I’d love to come up with something that we could do as a family.  I like to color eggs with my son.  Which, unfortunately doesn’t take too long.  We get those q-tip paints where you snap off one end and the color flows into the other end. 

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