(Me writing in journal #42)
Raising a special needs child has its unique challenges and stressors. I am constantly making sure that I have various outlets for myself in the moments I need some extra help.
At age 13, I started a journal because I wanted to keep track of the goings on in my life. Initially, I talked about cute boys and pretty clothes. Eventually though, as teen angst set in, I began to use it as a way to express deeper feelings I didn’t feel comfortable communicating outwardly.
I’m not sure why I kept up with it; I just know that it was and continues to be a great therapeutic outlet for me. I experience immediate calm once I start writing. My journal travels with me everywhere. I have often found myself rushing back to my car in tears about something, finding relief and solace in knowing my journal is waiting for me there. I’m not sure what I would do without it. It’s my confidante, therapist and bestie wrapped in one.
Here are some ways journal writing helps me throughout my special needs journey :
- To Reflect. Often times, by re-visiting events that happened and how I felt, I am actually able to receive more emotional clarity about the situation.
- To Express Difficult Material. Sometimes it’s hard to pinpoint the exact causes for a current state of anxiety or worry. By beginning to write about it, certain feelings that were previously inaccessible are able to get through.
- To Avoid Emotional Outbursts. At the height of frustration, I want to explode outwardly. Because things are rarely made better by this type of behavior, I find that writing in my journal first (furiously sometimes!), helps diffuse my heightened emotions so that I can communicate more effectively and from a neutral state of mind.
Want to get started but don’t know how?
1. Buy a fun new journal (I love Peter Pauper Press peterpauper.com).
2. Create the habit to write in your journal a few times a week, for example every Monday, Wednesday and Friday evening before bed.
3. Keep your journal with you and start writing down any difficult / uncomfortable feelings that come up for you during the day
A few days ago, a fellow special needs Mom posted this as her status on Facebook :
Autism Is Not A Parenting Fail
“You’ve done nothing wrong. You didn’t cause this. You haven’t failed your child. You were given an instruction manual for a Ford and your child is a Ferrari. So, congratulations! Your child is NOT fundamentally different from other children. You just need the right instruction manual. Parenting your child will be more intense. You’ll need more patience and time. Your child will have intense emotions and needs. But he’ll also have intense curiosity, drive, determination, desire, persistence and individuality. What you’ll need to find is the right fuel, the right environment and the right supports. With those, your child has great potential. With the right supports, he will have a happy and fulfilling life.”
As I read these poignant and true words, I couldn’t help but think – YES – AND – we mothers and fathers will ALSO have a happy and fulfilling life! This is my passion and mission for my fellow special needs parents : even WE can thrive.
(Grandpa and Arizona eating breakfast together)
When you become a parent, weekends, holidays and school breaks take on a whole new meaning. Next week is Arizona’s spring break and even though she still has some of her weekly to-do’s intact, a lot of her regular activities are cancelled. This leaves us some free time during the week to get creative!
Here are some fun things we have planned for our down time :
1) Play date with a friend in another city : I’ve been meaning to get together with some friends who live about an hour away. Since we have the time, we’ll spend an afternoon out there, letting the kids play together while we catch up!
2) Impromptu visit from Grandpa : My parents live in Ohio so we often have to plan weeks and months in advance to spend quality time with them. Because my Dad will be in Los Angeles for a conference, he will stay a few extra days and get some quality grandpa + Arizona time during her free time.
3) Girlfriend + Kid Luncheon : I have a few Mommy girlfriends who will be in town next weekend for the Easter holiday and decided to put together a “Good Friday potluck & playdate” party. I provide a kid friendly environment with LOTS of activities / toys AND food + libations + adult conversations for my girlfriends. BLISS.
From time to time, I will highlight a program, resource or service in the special needs community that has become a great addition to our lives.
This week, I will be sharing about a hidden gem here in Los Angeles – The Children’s Ranch Foundation, located in Atwater Village.
The Children’s Ranch offers unique therapeutic equestrian programs for kids and teens with special needs. Some of these programs are private riding lessons, social groups and therapeutic teen camps. Programs are customized for each child. Because I can’t say this more perfectly, here’s a blurb directly from the website : “The Ranch moves at “just the right pace,” becoming a refuge for the families it serves, and holding families close during often tumultuous times.”
Due to Arizona’s early obsession with horses, it became clear that we needed to get her around real ones as soon as possible. We are so grateful that we found the ranch. Arizona has been taking weekly lessons and participating in monthly social skills groups for the past few years now. She feels calm, happy and regulated at the ranch. Furthermore, she has gained a confidence around her newfound riding skill. It gives her something to be proud of and talk about with family and friends.
Note : scholarships are available for families in need of financial assistance.
Traveling around the world is one of my favorite things to do! Arizona took her first flight when she was 2 months old and we haven’t stopped since. Because of her insane amount of food allergies, however, traveling takes a lot of preparation and planning.
Here are my top 5 tips for traveling with a kid who suffers from food allergies :
- Bring a Doctor’s Note! Usually, airport security will let you through with a bottle or small container of milk (rice, almond, whole grain, soy or otherwise) for your infant. However, as I learned the hard way, the cut off age for this is usually 2 years old. Arizona had just turned 3 years old when we were traveling to Montreal, Quebec. We brought some individual box drinks of rice milk, but were not allowed through security because our daughter was over 2 (and therefore, no longer an infant). We learned that a doctor’s note stating her allergies (to dairy, in this case) would have helped. I’ve been traveling with one ever since.
- Get a Kitchen. We make sure we have a kitchen wherever we travel. This usually means renting a condo, apartment or house as opposed to booking a standard hotel room. This can often times be more cost effective than a hotel. For example, we booked a 3 bedroom house (with a private pool + yard + daily cleaning service) in Costa Rica for $120 / night. Having a kitchen is necessary (and stress relieving) when you have allergies in the family. Check out my favorite site vrbo.com for fun options.
- Send a Shopping List. If you’re visiting family or friends, send a shopping list ahead of time. You will have food items in stock when you arrive and can avoid spending the first day of your vacation grocery shopping. Easy!
- Bring or Ship as much Food as you can! In our case, we always travel with Arizona’s favorite gluten free / dairy free / nut free / soy free snacks. We even put big cartons of oat or rice milk in our suitcase and pray they don’t explode (they did once, on our way to Grand Cayman). But, it’s easy to travel with pre-packaged goods : rice pasta, rice, quinoa, etc. (Hint : putting them in Tupperware helps tremendously).
- Research your Area. This may mean checking out the grocery stores (and their offerings), doctor’s offices and medical centers in the area ahead of time. We once had to cancel a trip near the border of Panama because we realized the closest hospital (in case of medical emergency) was a 2 hour helicopter flight away from our lodging.
At the end of the day, food allergies shouldn’t restrict your travel completely! It may be a bump in the road, but just a little one.
* This is the first in a series of “Living with Food Allergies.” More topics coming soon!
When Arizona was 2.5 years old, we took her to see a developmental pediatrician due to some concerns we had about her development. 6 years later, I’m reflecting on the ride we’ve been on, including all the information I’ve collected along the way.
Luckily for me, Los Angeles is a crazy hub of resources and help for kiddos with special needs. Unluckily for me, and parents like me, it can be somewhat of an art to figure out exactly where to go for help, knowing WHAT to ask for and trying to wrap your head around what your child really needs.
One important thing to note is that having a developmental delay when you’re young does not always mean it will be a lifelong affliction. Early intervention is key. If you have any concerns about your child’s development, no matter how small, get it looked at while they’re young.
Where to start?
- Call your local regional center for free assessment and diagnosis. Every state should have a department of developmental services that lists the regional centers in your area. California resources are listed here : http://www.dds.ca.gov/DDSHomePage.cfm
- Tell your pediatrician that you have concerns about your child’s development. Even if they don’t agree with you (this happens more often than you think!), insist upon a referral to a child development specialist and take it from there.
In the future, I’ll have additional blog posts on specific information I’ve gathered along the way. There are a lot of us in this together and the process doesn’t have to be so isolating and overwhelming. I welcome your hints & tips as well!
At the beginning of each year, I set an intention for the upcoming 12 months. I usually end up with a long list of things I want to do better or different ways I want to be better. It can be daunting, to look at this list of New Year’s resolutions come February and realize I haven’t done much of anything differently.
As a special needs parent, I have experienced my child go through so many assessments and testings. Generally speaking, the focus is usually figuring out what your child can’t do and then measuring future accomplishments based on those “deficits.”
I have often found this way of testing to be depressing and frustrating. I don’t want to hear what my child “can’t do” compared to her peers. I want to hear all of the amazing things that my child can do right now!
In like manner, I have set a similar standard for myself with my “must be / do better lists.” I will celebrate all of my accomplishments, big and small. I will acknowledge the ways that I have transformed into a NEW me. I have declared 2015 to be the Year of Me.