So much more than “thank you”

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It’s been forever since I last posted. So much has happened: good, bad, & wonderful. So much growth has transpired as a team, personally, & in Filbert. There are countless soapboxes I have explored, passions I have honed and moments that have overwhelmed me to the point of frustration or happy tears. Life is so full. It’s an unpredictable adventure that I wouldn’t change for the world. I feel as though my life is where the rubber meets the road, being guarded or fake is impossible when the stakes are so high with limited time and entrenched loving investment.

Today I choose to share a glimpse of what I see in my life daily. I wake up to the sweet sound of my youngest babbling, my husband broiling bacon, my daughter choosing her outfit and the perfect key of my oldest, Filbert, singing. Breakfast is a mixture of chaos, connection and nutrition. Then the academic day begins with devotional, copy work, geography, history timeline, math and English. Within the hour the first member of our family arrives ready to enthrall Filbert’s brain with stories of the past; a Roman solider, the spread of Christianity and the like. Next up strolls in family member number two who will exercise with Filbert to get his body focused. He is kind and assured with a twist of challenge encouraging Filbert to grow. The next family member joins the fun with an air of grace, compassion and love as she guides him through fine motor exercises each one designed to increase his independence and inclusiveness within our unit.

Then I get the opportunity to share the world of science, invention and discovery with him teaching him the wonderfully gross composition of stool, vomit, and skunk smells. After an intense line up we have an hour to catch our breath outside or read a book aloud. Then we get to see yet another family member come dancing in full of literary devices ready to share the world in a more abstract form; she gracefully and patiently paints a picture that encourages Filbert to get on board and share his thoughts. Just before lunch the sound of laughter fills the air as our penultimate family member bounds through the door to once again help Filbert connect his brain and body. Lots of giggles, stretching, singing and toning happens in chorus as they work together. The mornings work is done, lunch is ready, and it’s no wonder Filbert feels accomplished his fingers, body and brain all full; his belly just one step behind.

The afternoon is full of outside time, art, and read alouds when our concluding family member comes in ready to calculate their way through math. At the day’s end there is a bucket that just overflows with the privilege of knowing all these wonderful family members daily journey with us in love, persistence and patience.

Community at our little house is not a word, it’s an experience that warms my heart each day. Without our beloved family I know all our hearts would be less full; thankfully God graciously gave us each other.

I have thought and thought about how to thank this amazing family, but words escape me. How can really put into words what it is to daily tangibly change someone’s life, and aid in making the impossible possible for their exceptional child. It’s the kind of thing you feel all the way to your core and I simply pray I can do the same for someone else some day.

And this is only half of our story, there is more to our team of wonderful peeps to be shared in the next post.

Guest post: Fuller life

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Since the day my daughter was born, I have been in the dark as to who she is.  Always waiting to open this present.
She has been in therapy since 18 months old with little progress which included 3 years of ABA.  Her ability to be consistent was keeping her behind in the program.
I heard of RPM years ago, but dismissed it.  Now that my daughter is 6 yrs. old, I was getting real concerned for her future. Em was screaming at me RPM!!!
I started with reading her age appropriate books and just felt she seemed different.  I also started talking to her as if she understood and she continued to seem different to me.  I then started intensive interaction, similar to Son-Rise, in which I felt progress was being made.  At that point I didn’t know if it is her or just me opening my eyes.
I started RPM with Sammy in a small room just reading and making a statement holding two answers in front of her.  What do you know, she came over and touched one of the choices.  This is a child who screams if you put a demand on her and a questionable higher intelligence besides give me food or TV.
I brought in Lenae Crandall from H.E.E.D (www.heedrpm.com), who came to my house to teach me how to get to the level of spelling. I will admit when Lenae was going through the session with Sammy, I was so weirded out.  Like did this just happen? Did she spell? I don’t believe it.  But looking back at the videos, I saw my daughter wanting to be heard, and spelling.
So I tried it on my own. She went nuts! Screaming and throwing things. Pretty much foaming at the mouth. I was crying everyday, but I still kept going.
I then decide a different strategy, purchased the letter boards and figured her out. She needs to be locked in a booster seat at the table with constant food in her mouth.  She always wants to eat. So I thought give her what she wants and see what happens.  Success at last!
These past two session have improved where I realized she isn’t needing all the apples I cut up during the 25 minutes of the session.  Sammy’s choices aren’t always 100% correct, but the spelling and the choices are getting more accurate.
You feel like such a rock star when you see your kid finally getting it! It has only been about 5 months and she continues to respond to the program.  All we have is time and I am giving her as much as she needs. Essentially, our lives are so much fuller from me just talking about the world to her and reading aloud. I never thought she liked it. Samantha always took books away from me when I read them, probably because she was bored of the same stories.  I get so excited going to the library picking out new books.  I can now go for an hour straight with her staying in the room without her wanting to leave.  I am so excited for what the future holds and to have open communication with my daughter.

Guest Post: Learning to BE

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Heartfelt words from a fellow momma raising a child with autism:

Getting an autism diagnosis for your child is a heart-wrecking incident in your life. It shakes you up completely and as a parent you hear only negative comments initially from doctors, therapists, friends and family. It seems like your life is ending with this incurable condition. You grieve over it and then you grieve some more. Then you realize that you cannot give up on your child. Your child is still the same child he was before you heard of the diagnosis. You start researching like there is no tomorrow. Soon your life becomes PhD study of diets, supplements, treatments and protocols for improvement. You become possessed by Autism recovery. You feel like there will be light at the end of the tunnel and you put in all your energy and resources into helping your child. You forget the rest of your family and just have laser focus on your child with diagnosis.

Continuously reading on FB, talking to only moms with special needs and therapists becomes your life. You work so hard without any breaks and soon it takes a toll on your health. After DOING so much, the gains don’t compare and then you start losing your optimism. You go through anger, guilt, frustration, not being enough feelings. There comes a point where just leading routine life starts becoming a burden. You realize that no matter how hard you try, things will work out only when your child is ready. You can make the best of efforts and the results will come when the timing is right. It’s not easy to surrender like this since one part of you says you cannot give up on your child, the other part says let it go and just accept life as is.

Finally after huge internal battles, I have chosen to just BE. To be happy with what I have, to be grateful for every small change I have seen, to look back at how much progress is made instead of how much more needs to be made. This LET GO has given me so much peace and relaxation. It reflects on my son and he is making progress even without me stressing about it. He still has a long way to go, but now I have decided to just BE instead of DO all the time like a non-stop robot. I have begun to love myself first and spend time in myself and do things that make me happy. Only when my cup is full, can I give me son my best. I have decided to judge my success as a mother based on how I present to him every day. I have to accept him for what he is instead of expecting him to be what I want him to be. This is hard, but I am making a conscious effort to surrender any thoughts that divert me from this intention.

Why am I sharing all this? It took me 6 years to get here. If sharing this can even help one mom, I feel like my mission is accomplished. There is huge learning curve on this journey. I guess our kids have come into our life to help us dive deep inside us and realize how much power and strength we have inside us that was just dormant. We are not just healing our kids, we are healing ourselves at the same time!! We are ordinary human beings and its normal to go through all these emotions. It’s important to forgive ourselves and continue to LET GO as we move along. I am very fortunate to share this journey with your rocking moms who teach me so much and are always supportive and inspiring!!

More RPM reflections

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Since I am knee deep in RPM I am finding the importance of referencing Soma’s books and really taking time to understand everything more now that I have a grasp on the basics (we sort of, lol). Soma’s green book is a fantastic from the very first page; it brought up so many things that I am thinking through and learning to be better at and supporting my son in his life.

  1. Priorities: What are my lifetime goals for Filbert? To tie his shoes? To answer a family member’s question? To get an education? To spell or handwrite to have meaningful relationships? — we often focus on how others are going to perceive our children and skills that would mold them into looking “normal”. The question is, how beneficial is it if he can answer “yes” or “no” to a relative if he cannot share is thoughts or opinion on the topic? How beneficial is it for him to tie his shoes if he cannot participate in the outing we are taking due to his anxiety from my lack of teaching him about the world prior to going to a new location?

What do I want for Filbert? I want him to be the best version of himself. I want to make his life better. I want him to have an education and share his thoughts and opinions with those around him. For him to know his value in Christ. For him to develop self-esteem knowing he is great at math and writing poetry. I want for him to have every opportunity to learn about God and tangibly respond through spelling. I want all those things more than him tying his shoes or looking “normal” in the grocery store. I love him today for exactly who he is while at the same time providing him every opportunity to grow his brain and life through education and setting goals with him for learning through muscle memory all the other things in life his body finds more challenging to accomplish.

2. Empowerment! I want Filbert to feel empowered. Through academic education he will be able to develop reasoning skills to use his learning, spelling skills to spell his opinions, all leading to having the tools for becoming a keen communicator.

3. Education creates new wirings in the brain leading to more flexibility (we often do not fear what we understand), combinatorial skills, and classification skills. Teaching him about every academic field will create for him a world that is more complete so he doesn’t find his surroundings sensory-terrifying. Knowledge changes how we interact and understand our environment.

4. “Every person has the ability to understand IF taught in the RIGHT way” – Soma

5. “Wishing isn’t enough. We must act. We must create the little steps toward achieving any goal that the person with autism wants to achieve. The mind is too precious of a thing to waste.” — Soma

A diagnosis does change that my son deserves an education. He is a beautiful person that God created and he deserves all the love, learning and care in the world as does every child.

Do you see your child?