this article!

Exactly what I needed to read today!

“Don’t neglect discipline. Understand that your disabled child needs discipline just as much as healthy children do. Set clear rules and boundaries that your child can realistically be expected to follow, and follow up with praise for good behavior and consequences for bad behavior. Intervene whenever your child has a tantrum. Remember that, while your child is limited in some ways by disability, he or she can still grow and mature in many other ways.

See abilities instead of disabilities. Shift your focus from what your child can’t do to all that he or she can do. Assess your child’s unique gifts and offer him or her appropriate enrichment activities. Express some progress in various areas as your child matures, and celebrate whenever your child masters new skills. Give your child opportunities to act as a positive role model for younger children who suffer from the same or a similar disability.

Let go of what you had planned so you can embrace what God has planned. Face the fact that your life hasn’t worked out the way you’d hoped, and be willing to let go of unrealistic plans for your future. But know that God will bring good out of even the worst situations if you trust Him. Ask Him to reveal His plans to you. Accept your child for who he or she is – rather than who you expected him to be – and ask God to help you discover all that’s good about your child.

Go ahead and grieve. Don’t be afraid to grieve for the dreams that have died in your life because of your child’s disability. Ask God to help you be aware of His presence with you as you go through the stages of grief – denial, anxiety, depression, anger and guilt. Pray about your concerns often. Get regular physical exercise to reduce your stress. Seek help from a therapist and medications to deal with depression if necessary. Surround yourself with friends who will listen to and support you. Ask God to show you how to transform your anger into constructive action. Remember that God’s grace is always available to you, in every circumstance.”

Source: http://www.crosswalk.com/family/parenting/find-joy-while-parenting-a-child-with-disabilities-1407557.html

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our pediatrician is awesome

“Don’t leave it up to [the insurance company] to do their job. I’m not saying they’re the bad guys here, but remember, it’s actually NOT in their best services for you to get services like physical, occupational or speech therapy. There are many cases where the orders for therapy get lost in the mix or get denied, and parents just don’t hear back for months. YOU as the parent end up having to do the legwork. Call, follow up, check back with us if you don’t hear back, and I’ll fight for you to get the best care for Anna, whatever it takes, even if it means talking to the president of your [insurance company]!”

 

 

anna’s masterlist

I’ve started working on a masterlist of contact information and Hawaii resources for cerebral palsy – these are all people who we’ve worked with or are working with currently for Anna. I’m going to go ahead and add this as a static page, since I’m pretty sure it’ll keep growing. Hope this is helpful for anybody who might be looking for the right people!

State of Hawaii Department of Health Early Child Intervention

  • Early Child Intervention shares the same office as the United Cerebral Palsy Association of Hawaii. The address is 414 Kuwili Street, #105.
  • (808) 532-6740 (Fax: 532-6747)
  • Our caseworker is David Choy, you can email him directly at davidc@ucpahi.org.
  • Anna receives physical and occupational therapy from Leona and Avis.

Kapiolani Medical Center Physical Therapy

  • Skip the main line and call PT directly at (808) 983-8235
  • It can take a while for insurance to approve the order. Depending on your insurance, you’ll have a set amount of times that you can receive PT. Make sure to call and double check with your insurance carier, so you don’t use up all your sessions.

Dr. Leon Grant, Neurologist

  • Direct line to office: (808) 947-1402
  • Appointments are made almost 6 – 9 months in advance, so call asap and get onto the waitlist.
  • NOTE: I believe there are two other pediatric neurologists on the island: Dr. Keith Abe and Dr. Ryan Lee. Dr. Abe shares the same office as Dr. Grant, and Dr. Lee is over at Shriner’s. I’ve never met with either of them, but have heard especially good things about Dr. Abe as well.

Kaipo’s Sandbox

  • Mika Keaulii is a local Anat Baniel Method practitioner who has been working with Anna from 8 months old.
  • Anna receives an intensive 10-session package for $500 (normally $60 per session). Mika comes to our house twice a day for five days, 30-45 minutes per session.
  • (808) 721-1773, mika@sandbox-hawaii.com

Mom vents and Reddit

I’ve been on Reddit since pregnancy, giggling at marvelously funny people and also hunting down useful parenting posts. It’s an entertaining resource of information. And many of the most popular posts are always rant/vent threats about horrible, horrible DHs. (DH stands for dear husband, Mom lingo, but there’s nothing ‘dear’ about anything they write or anything that they do.)

It’s really the worst. Typical scenarios: Mom wakes up at night to help baby, DH complains, cue Mom Rant. Mom needs a break, DH whines about needing his break, cue Mom Rant. Mom can’t do laundry, DH complains, cue Mom Rant. Terrible things are said! Screenshots of texts are posted! 100+ comments of commiseration and solidarity, sister! Kick that DH in the face (or other body parts)! Go!

And I have to admit, sometimes, I sometimes feel truly upset for these moms. After all, just like them, I’ve been handling all the night wakings. How dare these DHs not appreciate us more? I’m a WAHM and I get it – it feels like we never have a single moment to ourselves between feeding baby, working, house chores, cooking, playing with baby. At least DH gets to leave the house, right? And sit in traffic in peace and quiet, right? And have adult conversations and real social interactions! What the poo! Wow there is so much to complain about…if we put our mind to it!

But sometimes, the conversations tend to be a bit one-sided. Maybe it’s because we moms are more rant-y than our DHs. Maybe we know how to express ourselves a bit better, when we’re on an anonymous forum board and we know our voices will be heard and accepted by other sympathizing moms. But there was one Reddit post that was so level-headed about how this mom needs to calm down and get some perspective. Instead of being shot down, it actually got upvoted gazillion times. Turns out, there’s people like me who read, feel upset, but also feel like “Hmm ok, maybe let’s take a step back.”

The Redditor gently reminded that we moms tend to forget that it’s not just our lives that’s been turned upside down. Yes, perhaps moms are doing the majority of the work and baby care, but both of our lifestyles have changed. For the better, yes. And maybe, for now…the worse? Well, that depends on your perspective. Think about it: DH no longer has time to come home and unwind after a stressful day and a long commute. There’s a 17-lb baby in the living room! There’s no more sleeping in on the weekends. Maybe DH loved videogames, pre-baby. Nada, post-baby. We’re vaguely sleep deprived all the time, even if baby is sleeping through the night. If DH is the only one working, there’s the unyielding, ongoing pressure of supporting the family.

And the house is different. There’s baby toys everywhere. Laundry baskets might not always be empty. Dishes in sink. I try to keep up with the household cleaning and keeping things tidy, it’s definitely chaotic sometimes. Dinners tend to be cold. And I’m sometimes so exhausted that I have 0% energy to even have a decent conversation by the time we’re sitting at the dinner table. I’m working on that. I’m working really hard on time management. More on that later.

A baby can be a strain on a relationship, especially in the early years. It’s like parent + marriage bootcamp. And our family — we’re doing alright! We’re starting to semi-work it out, here at 7.5 months in. Whenever I need a break, I tell him. When DH has had a long day and can’t give baby a bath, I do it. We do our best to respect and listen to each other. We try to communicate. It’s cliche, but communication is really key. We don’t keep track of things like, “I changed her diaper this morning, it’s your turn!” We don’t do that. (We try not to, at least. The poo has recently become quite phenomenal, thanks to solid foods.)

Vent away, moms. But then, let’s move on. Let’s forgive, work on the situation if you have to, talk to each other. A tiny amount of gentleness and respect goes a long way, for both sides.

Precious Moments

People say that weeks 1 through 6 are the hardest. That’s why they call it the fourth trimester, when two people whose worlds were just “we, our, us” gets hit by this tiny, wriggling, crying, bawling asteroid that’s depending solely upon them for its survival. When you’re up 2 a.m., 4 a.m., 6 a.m., etc. to the sound of a hungry newborn for weeks, it feels like you’ve just bought yourself a never-ending jarring wake up call: “WAAH WELCOME TO PARENTHOOD NOOBS WAAAAH.”

Browsing on Reddit and ScaryMommy.com made it clear to me that post-partum depression is a very real thing. There was a reason why Kapiolani Center and my baby’s pediatrician kept doublechecking if I had a “support” system. And I did. I was thankful that I had such a core support group with church, friends and family. They came over every day for a month after birth. They cleaned the house. They brought meals — lunch and dinner. They let me sleep while baby was asleep. What a blessing!

Yet, even with all that help, I definitely felt it. Not PPD. A slightly neurotic cocktail of mild baby blues and a touch of PPA: post-partum anxiety. Mahalo to the hormones all going crazy with having a baby and breastfeeding. I started crying when it didn’t make ANY sense to cry. I started worrying, and thinking anxious thoughts like: “I’m such a bad mom, and I never deserved to have you. Who would trust such a precious baby like you to me? I wouldn’t. I can’t do anything to help you, to understand what’s wrong when you cry, whether you’re choking on something, whether you’re gassy, whether you’re hungry. Did I eat something wrong? Did I set you down in the crib too fast? Am I not talking enough to you?”

Philippians 4:6-7: “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

2 Corinthians 12:9: “And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.”

That’s when I read and prayed. I remembered that God gave me this baby and He knew what He was doing,  and as long as I’m doing my best…power is perfected in weakness. (Believe me. My weakspot has always been kids/spitups/tantrums/diapers/baby/ew.)

Suddenly, I started noticing all the precious moments. Like when the corners of her lips curve up, after she’s full and happy. How she seems so at home when she falls asleep nursing. When she looks at me with those deep, dark and beautiful eyes, so big and wise even at 3 weeks in. They’re her daddy’s eyes. When she give me the middle finger more times than I can count. LOL. How cute she looks when we give her a sponge bath. The baby smell! Ah!

We’re four months in now, and this new lifestyle of “three of us” is starting to make sense, starting to shift into place. It’s good and feels right, and when the next curveball comes around (4 month sleep regression?? Teething?? FEVERS?), we’re going to be OK.

And I’m going to be reading this post telling myself that I already told myself that we’re going to be OK! There!

The Hunger Is REAL

You know how everyone talks about pregnancy cravings? Well, it ain’t got nothing on breastfeeding cravings.

Sure, I craved it all while Anna was growing in me belly. Mcdonalds chicken Mcnuggets. Watermelons. Strawberries. Pickles. Hot dogs. Steak. Berries. Melons. Mangos. ALL THE CHOCOLATE.

But I don’t think I knew what true hunger was until I had my C-section and started getting into full BF mode around day 4. When I got home, I swelled up like a balloon. My legs turned into tree trunks. I had cankles. My ankles were as big as my thighs. I waddled around with all the water weight for maybe a week, thinking: OMG I AM NEVER GOING TO LOSE WEIGHT.

Then, suddenly 20 lbs of my pregnancy weight just vanished. When I stepped on the scale, I could hardly believe the number. I hadn’t been this skinny in  years. While I was happy to have lost the weight, a new problem arose: Although I was constantly eating, I was constantly starving.

I was a monster, guys. While feeding Anna every two hours, I was downing the gallon-sized water jug that I got from Kapiolani Medical Center, shoving fistfuls of mixed nuts from Costco into my mouth, heading back to the kitchen for lunch and dinner refills, eating granola cereal at 2 a.m., and filling my bowl with triple scoops of chocolate icecream. I used to get hangry before, but while sitting at the pediatricians for 3 hours without a snack, I was HANGRY. I’d stare jealously at Anna happily BF, when my spine seemed to suction itself to my belly. I felt like my body was eating itself, struggling to produce enough food for this ravenous 7lb, 3 oz creature that seemed like the only other person in the world who was more hungry than I was.

I kept losing weight too. 5 more lbs, and then another 5. It was a little scary, and I kept trying to gain it back because I wanted to make sure I was healthy and could produce enough milk.

The hunger continued for 3 months. The gnawing sensation of my empty stomach would be satisfied after I inhaled an ENORMOUS meal, and then come right back half an hour later. But slowly, it got better. Particularly around 3.5 months, and significantly improved by 4 months.

Now, hunger still suddenly strikes, especially in the morning or when I’m dehydrated, but that oh-my-goodness-feed-me-NOW-OR DEATH feeling is gone. People say you have to eat healthy during this time. Load up on protein, drink plenty of water, don’t eat candy and eat fruits instead. I tried. I tried, really. But TBH, BF is supposed to burn like 6,000 calories (OK, no, it’s like 500-600 calories) right? So I ended up thinking: “If I’m on this miraculous diet right now, why NOT enjoy it and indulge?”

So I’m drinking lots of water, trying to eat healthy and fill my plate up with veggies, but I’m not going to beat myself up for eating one (or two) bowls of icecream after dinner..hopefully this doesn’t come back to bite me in the butt when I stop BF.