This is a fairly typical problem, but takes on a whole different form when applied to the health difficulties of a loved one. When it’s your child, it can be completely overwhelming to think about all the different possible scenarios that could happen. Every procedure has risks. Every time your child goes into the doctor’s office they could get sick (and for many special needs kids, that’s no minor thing).
Divorce Information
This is more than slightly off topic, but recently a lot of women in my support groups have talked about either divorcing their spouse or their spouse asking for a divorce. The ones whose spouse request a divorce are taken completely off guard and are especially distressed. I’m going to create a page about this when I have a moment, but in the meantime I found a great resource that includes information about divorce in all 50 states. It has lawyers you could potentially contact, but does not push you into doing so. If you would prefer to do the research on your own they provide all the information you need.
I hope it helps. When I finish with the page it’ll be more comprehensive. It makes me more than a little sad to think about everyone going through this major life event having no idea where to begin.
Update: The page is up! It didn’t take as long as I thought.
Caring for a Child with Special Needs has Been a Growth Opportunity
In my experience, when people look for growth opportunities they usually talk about things like traveling, training, or networking with a specific community of people. I’ve done all of these things, and they certainly do expand your horizons. For me, none of them have done nearly as much to grow me as a person as caring for our son with feeding difficulties.
After talking to other moms, I’ve come to understand it’s different to care for a child without health problems. Then, you’re balancing between how much attention is appropriate to give them versus how much independence you can gain for yourself to accomplish your tasks for that day. The balance is different for us. We know exactly how much attention our son needs, and most of it is spent making sure he’s fed and actively performing his assigned physical therapy exercises. I don’t think of it as less time for him is more time for me to do what I need to do. Less time for him is slower progress toward walking and crawling independently.
Missing Out on the Human Experience
Watching my son, who is an extremely social child, interact with other people has made me realize just how little attention the general population pays to their surroundings. What do I mean by that? It’s completely normal for us to walk into a coffee shop and see everyone but the employees staring down at an electronic device. My son waves, and he says hi. He smiles wide. His whole world lights up when someone makes eye contact. We’ll have our coffee and be gone before anyone makes eye contact with him a single time. If they do, they’ll immediately look away back to their phone, laptop, tablet, what have you.
ICD-9-CM Transition to ICD-10-CM and Why it’s Awesome
In ICD-9-CM, if your child has feeding difficulties or is labeled as failure to thrive (FTT) the code used for the purposes of insurance billing is, “…ICD-9-CM 783.3 Feeding difficulties and mismanagement.”(1) This seems at first glance to make sense, but if your child has a medical condition that is keeping them from gaining weight, it’s extremely hurtful to see the terms, “feeding,” and “mismanagement,” grouped together in their records. It doesn’t go unnoticed, and several mothers I’ve talked to have been emotionally upset by the code. It’s difficult to explain to them it’s just for insurance billing purposes when it’s part of their child’s official medical documentation.
Eating Out with a Tubie
Waiter/Waitress: “Would you like a meal for him/her?”
Parent(s): “No thanks, he already ate before we left home. He’ll share with us if he wants something.”
This is an all too familiar experience for parents with children that either can’t or don’t want to eat. Continue reading
Our 2015 Summer Adventures
This is, for all intents and purposes, my son’s first real summer. We spent last summer struggling to help him gain weight, including an uncomfortably long hospital admission. Now that he’s doing better we’ve started exploring all of the awesome activities you can do during the summer!
Deal with Tomorrow When it Comes
It’s difficult, when your child has medical difficulties, not to worry about what tomorrow brings. Good days take turns with bad ones. On good days you worry a bad day is next. On bad days you worry tomorrow will be worse. When bad days chain together it feels like it’ll never end. Our minds are talented at focusing on the negative. Bringing your thoughts toward the positive can bring a significant improvement to how you feel about your life.
RQ, What Health Problems is Your Son Struggling With?
I was recently asked by a reader what our son is struggling with. I had avoided discussing it because I didn’t want to burden anyone with the details. I wasn’t sure if the specifics would be unnecessary, and I didn’t want to make anyone uncomfortable. I realize now that it would help people understand where I’m coming from if I shared more about his situation.
Cloth Diapering vs. Disposables, and Why I Use Both
Cloth diapering is a lot of work sometimes. Every two days you have to do laundry. While this isn’t a difficult prospect for me because I have to do laundry every day, it would be a huge annoyance for many. My son gets sick, a lot. We measure the necessary size of his wardrobe by how many outfits he needs to get through a single day.
Struggling to Thrive 