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special needs parenting

Dancing With Special Needs

 

“On Six Years of Freyja-hood

Freyja turns six tomorrow. 

Today was a rainy day of mini-vacation on Cape Cod. There were Mad Libs, there were board games, there was reading, there was the telling of stories. As she got in the bath tonight, I told her the story of her birth and she rolled her eyes and groaned and said "But I already know, Mama!"

Considering the complexity of this child, it's a pretty simple story (featured in more detail on the blog). I will leave out the drama for the squeamish readers and summarize here: Early one morning, spouse says: I'm cancelling my plans for tonight. I feel like I should stay home just in case. Remembering the way my first birth went, I say, no, go ahead and keep your plans! This baby has another two weeks to go. Have a nice day! And off I go to work and about five hours later I go into labor at my desk. Since the last baby took five days of labor to make up her mind about coming out, I think nothing of the contractions and reassure people that everything's fine and there's no cause for alarm. Then I lose my mucus plug while interviewing a candidate for a position on my team (whom I immediately hire), think I am bleeding to death, go get an emergency ultrasound, am told that I am definitely in labor and that I should under no circumstances go back to the office or go anywhere but straight home. In the cab, I alternate between not wanting to scare the cabbie into thinking I will give birth in the backseat of his car and expressing extreme gratitude that my spouse's spidey sense was dead on. He was home to receive me. Figuring we have a long night ahead of us, I sit on the birthing ball, bouncing and screaming and watching a season and a half of Breaking Bad, try to take a nap as Ina May Gaskin advises, and then lie in the bathtub for so long that I don't realize I am transitioning until I am puking all over myself. Spouse calls midwife when my screams become continuous but for the retching. Midwife shows up in a flash and says "holy shit you're having this baby right here in the bathtub, right now" and seventeen minutes later it's 5:03 am and I have a baby on me and a plate full of Oreos that I cram into my mouth two at a time because my blood sugar is low and giving birth makes me hungry in the kind of way that only a gigantic bag of double-stuf Oreos and a newborn baby can satisfy.  Midwife and doula clean up and clear out, other child wakes up, spouse passes out from exhaustion and I don't sleep well for the next five and a half years. The end. 

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So six years ago I was having the homebirth I always wanted, giving birth to a second daughter, completing my family and perfecting my life. 

Five years ago I knew there was something terribly wrong with my baby and was trying desperately to convince everyone else that she needed evaluation and help.

Four years ago I was drowning in diagnoses and medical information, trying to navigate the Early Intervention system in New York City, knowing that if she lived, we would leave. If we stayed, she wouldn't stand a chance. 

Three years ago she was placed in the wrong classroom. I knew it on the first day of school and it took the DOE an entire year to move her. So much precious time wasted. (But she rocked a ballet dance recital! It was covered in the NY times!) .

Two years ago we made the decision to leave our hometown, the Big Apple, where were were both born and raised and where we'd always been sure we would also die. We knew it was the right thing to do to give both of our children what we felt they needed and deserved.

One year ago I felt hope as she started her last year of preschool in a truly integrated, inclusive setting.

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And here we are today, getting ready to celebrate her birthday. It's a celebration of life. Her life. Of beating the odds, a day at a time. For the older she gets, the more victorious we feel. Her diagnosis is cruel and unforgiving, but she doesn't know it. It doesn't stop her and she doesn't let anything stop us. We are sleeping a little better now because we mostly believe she will be alive when we go upstairs to rouse her every morning. She is thriving and blossoming and she is just so busy being.

She has big plans for her birthday. She has a fancy dress to wear and wants cake and donuts and presents and family and friends. She tells everyone she sees that she is turning six on September 24th and that she is really excited. But her party is a week later, so she plans to celebrate all week long. And then it will be Halloween soon and she's going to be Princess Anna, who is from Frozen, in case you didn't know. She rattles this all off to the checkout person at the grocery store, the barista at the coffee shop, the bus driver, the lady who cleans the bathrooms in the town center. And they look down at her and I watch them take her in, their eyes running over the walker, the leg braces, and the sparkly eyes and big smile. I see her as they see her and I watch as they fall in love with her and I am proud that she is mine, this little being who spreads joy wherever she goes, warming the hearts of everyone she encounters.   

In a way, Freyja is Milo, the main character in my favorite book of all time, The Phantom Tollbooth. Milo is sent on a journey, the truth of which the King of Dictionopolis and the Mathemagician both know but refuse to tell him until he has returned successful. Instead they wish him well, set him up with an entourage consisting of bugs and dogs to keep him safe, give him tools to fight the demons he will surely encounter, and send him on his way. 

Remember that thing we told you we couldn't tell you until you were back? the kings say to Milo at the festival they hold in his honor upon his return, having rescued the princesses of Sweet Rhyme and Pure Reason and restored them to ruling the kingdom of Wisdom. Yes, he says eagerly. What was it? "It was impossible," one of them says, very seriously. "Completely impossible," says the other.

If Freyja is Milo, then I am the King of Dictionopolis, powerless to fix the plight of my own child but with a head full of all the letters and words in the whole world, and Johnny is the Mathemagician, with a magic staff that rewrites all the formulas and creates solutions to unusual problems. We created this child. We unwittingly set her up for this journey, and now, just shy of six years in, we can look at her and marvel. What we knew would be completely impossible, she has done. 

But I'm never going to tell her that. 

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At Back to School night a couple weeks ago, several parents came up to me, introduced themselves, and told me they hear about Freyja every single day from their kids. I smiled and made small talk and chatted about play dates that probably won't ever happen, and I wondered how they knew I was her mother. How did they know? I had no name tag on. I hadn't even opened my mouth. Do I just exude L'Air Du Special Needs Mama somehow? 

I pondered this as I sat down in her tiny chair. We listened to her teacher as she talked about school rules, field trips they needed volunteer chaperones for, allergies in the classroom, ziploc bags full of extra underwear and socks I needed to send in. In seventeen little folders on the tables were seventeen green sheets of paper, upon which we were asked to write down some emergency contact information. Under this was a blank space, at the beginning of which read: "Tell us a little bit about what your hopes and dreams are for your child to achieve this year!" I chewed my pen cap, thinking. I peered over at the mom next to me to peek at what she was writing, but I couldn't see. I wondered what other parents said. I want Junior to be able to read chapter books this year. We hope that Molly continues to benefit from the socialization that preschool provided last year. Who knows? I closed my eyes for a moment and then I wrote: "Freyja is a hardworking, determined child who benefits from an inclusive environment with neurotypical peers as models. Of course we are concerned about her academics but even more important to us is this: We know that schoool, like life, is full of joys and frustrations. We want Freyja to be able to face both as she grows. She will never stop working toward her goals. If she knows you are working with her, she will never ever let you down, so please don't ever give up on her." And I folded the green sheet of paper and dropped it into the pile on the teacher's desk and walked out into the night, back toward home, to my sleeping girls, to the life that I never knew was possible until Freyja came along. “ by Aimee Christian @thewriteaimee

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Raising children is the biggest blessing and can be incredibly challenging, let alone parenting a child with illness or special needs. My own wake up call was my daughter’s serious disease, and then my sister’s son who was diagnosed with having autism. I had to hit rock bottom several times before I woke up. But I am so glad I woke up, so I could be there for myself, my family, my friends and my clients.

Are you overstressed? Do you suffer from psychic pain? Do you battles symptoms from previous traumas (physical or emotional) which are interfering with your present life, and preventing you from living fully and in your joy? If you need help healing, and want to release what is no longer serving you and get yourself back…. I have a program specifically for you, that includes this revolutionary and powerfully effective natural healing modality called Clarity Breathwork.  Helping women heal trauma, inner stress and emotional pain is one of my huge passions and areas of expertise. Because I have been there, because I have healed myself, because I am so grateful I took the additional training, because I care and feel compelled to share this gold with others. Pain is common, suffering is rampant…but suffering is a choice, as are peace and joy. I must do what I can help people find their peace and joy that is our birthright as human beings!

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Life Planning Methods for Parents of Children with Special Needs

April is around the corner, and it is autism awareness month. I bow to my dear sister, my inspiration, who does whatever it takes to be the best mother she can be to her son, my nephew, with autism, while balancing her own needs, the needs of her husband, the needs of her other daughter, my niece, and the rest of our family. My sister has risen to face her life with grace. She reads all the latest books, takes workshops, connects and networks with other families raising children with special needs or on the autistic spectrum, and is very active in her community and school district. She made sure my nephew had the best doctors, therapists and teachers as soon as he was diagnosed.  She does what she can to make sure her son feels safe, secure, accepted, and confident, as well as find and hone his unique gifts. 

If you have a child with special needs, check out this excellent article regarding life planning methods for parents of these children; it was graciously contributed by Jenny Wise, a homeschooling mom to four children including a seven-year-old on the autistic spectrum. I add some additional resources for parents of children with special needs. #SpecialNeedsParents #SpecialNeedsParenting #AutismParents #AutisticSpectrum #AutismAcceptance #AutismAwareness #AutismLife #AutismLove #AutismSpeaks #AutismSupport

Parents of children with special needs often begin worrying about long-term care from day one. Depending on the needs of your child, he or she may be able to attend college, build a family, or have a stable career. If, on the other hand, your child will need ongoing care for the rest of his or her life, there are other characteristics and hurdles to consider.

Believe it or not, your life planning strategy for your special needs child should begin right now. Waiting until your child becomes an adult is often setting yourself up for frustration and unnecessary stress. The sooner you begin thinking about the future of your child, the sooner you can start preparing for that future - and the better that future will be.

In this article, we’re going to share some useful planning methods that will help you get started.

1. Don’t Go It Alone

Whether your child is looking at lifetime care or a fairly typical future, you should never try to go through this process alone. Every special needs child requires unique attention and planning. The earlier you find a professional to help you juggle the load, the more comfortable you’ll be throughout the process. It will also make tackling financial and estate essentials far more manageable. You can read more about these essentials through Family Connect.

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2. Think About Finances

 There are multiple ways to help your child financially as he or she ages. Important areas to consider include federal and state benefits (such as Social Security, Medicare, and Medicaid), special needs trusts, and 529 ABLE accounts. These accounts are special savings accounts put together for individuals with special needs. The assets in the account will be allowed to accumulate (and be withdrawn for qualified expenses) tax-free. Read more about these financial options through Farmers Insurance.

3. Assume The Worst

The unfortunate truth is that, in many cases, parents do not live long enough to help their special needs child cope with the real world. There are additional issues to be considered - including a will and a letter of intent. This letter should describe how you wish to handle care for your child in your absence. It is your responsibility to put together life insurance resources and detailed information about the special needs of your child. You can learn more about the legality of life planning through Wrights Law.

4. Think Beyond Legality

While there are dozens of legal issues to consider when planning a future for a child with special needs, you also need to think beyond the legal requirements. What health care providers will your child use? What kind of therapy will be available? Who would you prefer to use as a caregiver? And think about special contingencies and money or instructions you’ll want to have in place should they be needed. For example, what if your child is physically injured in a car accident and needs special care in addition to the daily care you might already be planning for? Or what if your child develops a substance abuse problem or addiction? Who will be in charge of helping them get into treatment and how will the costs be covered? Write down a list of questions that have entered your mind about the future. Take as much time as possible to answer each one. This is how you cover your bases.

5. Stand Your Ground

There might be other individuals (some parents, some not) who will question your decision to start life planning as early as possible. Don’t be afraid to stand your ground. You are not thinking too hard or being unrealistic. You are being a concerned and responsible parent. Any professional involved in the process will affirm that statement. It’s never too early.

The bottom line is simple. The more you plan ahead, the better off your special needs child will be. If you start planning before your child is a teenager, you’ll have at least six years to make solid arrangements for his or her future - and that is parenting at its finest.

 

Guest Author

Jenny Wise is a homeschooling mom to four children including a seven-year-old on the autism spectrum. She created her website  SpecialHomeEducator.com as a pure service forum for sharing her adventures, and chronicling her ups and downs in homeschooling her children - including her child with special needs, and connecting with other homeschooling and parents of special needs families. 

Below are some wonderful additional resources.

This is a must watch fact-based story of an autistic woman who became one of the top scientists in the humane livestock handling industry, and a hero to autistic people everywhere.

Temple Grandin
Starring Claire Danes, Catherine O'Hara, Julia Ormond, David Strathairn

I am passionate about changing lives. This 44-day course is changing lives. Vital Mind Reset is a program that will hold your hand and help you heal your life without a prescription. It will also introduce you to a community of people just like you – all working to transform their lives and revive their power and joy. Be a part of this community. Be a part of something greater and get yourself back! This course is a must, by renowned holistic psychiatrist Dr. Kelly Brogan, author of NY Times best seller 'A Mind Of Your Own', a dear friend and trusted colleague I can vouch for personally and support whole heartedly.  

Enjoy radio shows from some of the world’s greatest teachers in spirituality, health, and wellness. Begin your journey of personal growth and healing now by listening to HayHouseRadio.com – radio for your soul. Hay House also brings these teachers and healers to you with their wonderful array of online courses. that enhance the quality of life of individuals and ultimately the world we live in.