Birthday Appreciation

Today Freya is 7.

This pictures makes me feel so many things.  I think it is the ratio of head sizes, the reminder of how small and fragile Freya was in the beginning.  All babies are small, all babies are fragile, but some certainly more so than others. 

I strive to speak and understand in a way that acknowledges everyone's path and their struggles...reminding myself and my children that though someone looks to have things a certain way, we can never truly know how it is for the person.  And of course I believe that.

But mothering a child with special needs is different, it's harder - it just is.

I say this from the experience of having two other children who are not special needs.

I don't love them any less, or Freya any more, or vice versa.  I am their mother and I love them all as deeply and completely as mother's do.

But the expectation is that my other two daughters will grow up and create their own lives, that a crucial part of their development will be finding their autonomy from me.  Of course I will always be concerned for them and offer what guidance and support they will accept (and pray they live close or at least come visit often if they move away)...but at some point we theoretically hand them the keys and hope they listened well when we taught them about driving.

And yes, Freya will also want her autonomy, will have opinions and desires for her life just as much as the other two.  But, as things are now for PWS, her Dad and I will always be the drivers.

I think of how second nature it is becoming to quietly adjust the environment my daughter is in.  Casually stepping behind her as her friend picks her up (just in case they fall over as children do), distracting her when someone else has food and it is not time yet to eat, filling in the language gaps when she talks to a friend, initiating a talking game when children are playing around her and she has not been invited in nor has the energy to get up, the nightly hour-long meal prep for lunch the next day, finding moments in whatever windows for movement therapy or articulation practice.

I spend more time thinking about Freya, what she has and what she needs.  I evaluate her actions, monitor and attune to her emotions.  I am often off to the side, silently watching her interactions with her peers, questioning and thinking how best I can help guide these interactions.  I am thinking about meals coming up and what nutrition she needs.  I am gauging her energy level with what activities are approaching.

I see my friends whose children require more also.  I see them holding and trying to soothe children who don't yet know how to be calm in their bodies, I see them checking monitors every few minutes, timing trips to the bathroom around blood sugar spikes, I see them scanning the room for sensory irritations, or quietly shifting chairs out of the path of a specialized walker.  I know they are going home and searching the internet, ordering specialized books off amazon, calling doctors and implementing whatever therapies they can do themselves.  I know they are joining Facebook groups and seeking playdates with fellow moms who can relate.  They are fulfilling the normal parenting tasks, and then they are working overtime, always.

When I look back over these last 7 years, I am sometimes shocked to remember some of the obstacles we maneuvered; the fears, the doctor trips, the tests, the fight for GH, the visits to the ER, advocating for therapies, the paperwork, all the questioning of what Freya needed...it can be overwhelming to look at it all together.  But if I remind myself that we didn't tackle all of it in one day, that where we are now has been one gradual step in front of the other, and her future will be the same...then I can take a breathe and just rejoice in how far we have come.

Here We Go...

I'm sure many of you can relate to this, the moment your child does something that you've read about in the literature of their disorder, perhaps something you hoped they would never do or experience. Then one day...it happens, seemingly from nowhere, and your first thought is, "Here we go."

I was called to Freya's school yesterday because she could not stop picking at a healing wound on her hand.  She even expressed those words herself, "I can't stop".  They went through a few bandaids, tried distraction, gave her a bag of ice and then called me for suggestions.  As soon as the school secretary started describing what was happening, my stomach turned and I thought, "Here we go".

Of course I did not have suggestions I could explain over the phone.  Years of articles, doctor visits, lists of PWS symptoms and FB posts from many other parents of kids with PWS ran through my mind.  Causes, signs and strategies all jumbled around in my thoughts competing for each other so all I said was, "I'll be there in 10 minutes."

Freya has not shown any extreme signs of anxiety so far.  Sometimes she perseverates, sometimes she picks at bug bites, sometimes she sits by herself methodically going through a stack of books one page at a time.  But none of these have ever been an issue.  As soon as I heard that she literally could not stop picking at her hand, I knew it for the anxiety I have feared.

I jumped in my car and drove to the school.  I called my husband along the way to tell him what was happening.  Guess what was the first thing he said..."Here we go".  

They (whoever they are - specialists, doctors, other parents) say that we should not look ahead too far when your child has a diagnosis of PWS.  It is one of the hardest disorders to navigate.  (I say this because I have read that parents of kids with PWS have some of the, if not the, highest divorce rate of couples with special needs children, caretakers and family members of people with PWS have incredibly high stress levels and some - especially siblings - even suffer from PTSD).  So the message is to take one phase at a time without getting too bogged down with what MAY happen in the future.

I say MAY for a few reasons - one, it is a spectrum disorder, meaning there are a variety of ways PWS manifests and to a variety of severities.  The other is the rate they are researching and learning about this disorder; it is exciting and inspiring.  I have said this before and I will repeat it every day of Freya's life as needed - one of the first things that Dr. Miller told us at our initial appointment years ago was, "there is so much hope."

I believe it is good to look into the future so that we are prepared for these moments.  No, we should not let the 'horror' stories destroy our hope, or are ability to properly care for our child and the phase they are in. But we should allow those stories to help us be better prepared for the possibilities we face with our child's future.

I know what Freya is potentially capable of because of her disorder.  But I also know what she is capable of because she is human; she is bright, motivated, friendly, caring and interested in the world around her.  If anxiety is something that we have to start dealing with, then we will do it with understanding, knowledge and, hopefully, grace.

This was not the first 'here we go' moment, and it won't be the last.  But with every one, we have come into it armed with information and awareness, even if it breaks our hearts a bit.

When I arrived at the school, slightly terrified as to what I would find, Freya was in the office with a bag of ice and a smile on her face waiting to go work with the resource teacher, whom she loves dearly.  I knew she was in good hands, and had apparently moved on from the moment.  I still gave her some Rescue Remedy, my go-to anxiety treatment (for those who don't know, Rescue Remedy is a Bach Flower remedy - totally safe and effective) and even left a bottle in the office for these moments.

The transition into first grade can be hard for some kids, especially kids like Freya.  I thought she was doing fairly well after that first week.  Perhaps she is and yesterday was a rare event.  Perhaps not and I need to be more aware of how it is affecting her and her anxiety.  Either way it is yet another reminder that this journey of PWS is not a straight, easy path.

But that doesn't mean we can't enjoy the scenery along the way.

Fear, Doubt, Questioning

Fear, Doubt, Questioning

Fear, Doubt, Questioning

I have tried to write this post three times already and these are the words that keep appearing in my writing...

Fear

Doubt 

Questioning

How do we move beyond that?  How do we, as the parents of these children who are so precious to us and need so much, how do we make the best decisions for them?  (Spoiler alert: there is no answer in this post.)

In my writing I keep trying to assess the details of Freya's life at the moment; How I am unsure if she will do well mainstreamed without an aid...How terrified I am, ultimately, to be doing so...How I watch so closely when I drop her off and pick her up from school and have yet to see a child run to her with excitement...How I see her watching these children in anticipation and her unacknowledged disappointment that they are running to each other instead of her...How excited she is to walk her little sister to the kindergarten class she was in last year, though her sister shrugs off her hugs...

How it is only day 3 and I want to yell at the gaggle of energetic children to look at her, LOOK AT HER...she just wants to play with you, she just wants to belong.

Perhaps I am being dramatic and have it all wrong.  Perhaps when I am not there the kids are trying to play with her and vie for her attention.  Perhaps her speech issues are not issues to them at all.  Perhaps her grief-filled sobs after the first day of school had nothing to do with anything.  Or perhaps they do.

Fear, Doubt, Questioning

I sometimes wonder if throwing her into the melee of 'typically developing' children is a good thing for her.  But then I ask myself, how could it not?  With a little extra help, she is smart enough.  With a little extra supervision, she can make friends.  But what happens when that little extra is not there?    

I've said it before...I miss Freya's special education teachers and therapists.  I miss knowing that I was placing her into the hands of people who have chosen to work with kids like her, kids that need extra.  The teachers at her present school have all been so kind, and loving, and helpful but...But...

Fear, Doubt, Questioning

We will never have this figured out.  This is the lesson I am learning.  We can pass over one hurdle after another, but more will always be in front of us.  Some will even knock us on our asses.  But we must always get up.  We must always keep moving forward.

For now that means pick up Freya from school and shower her with so much love and attention that she will be sure to remember there is always a place for her too.  

Put On Your Oxygen Mask First...

What do you do when the well runs dry?

I'll be honest...it's been a rough few weeks, mentally.  I unfortunately caught some gnarly sickness while my husband was out of town. I spent three days on the couch feeling as if my adrenals had been siphoned of any and all energy.  During this time I had to rely on the abilities of my 13 year-old daughter to keep the calm, cleanliness and eating aspect of our lives moving forward.  She is an amazing girl, but this challenge was a big one.  I may have recovered physically from that illness, but am still dragging ass in the mental capacity department.

I am hoping that summer, with it's lack of schedule, warm days and freedom will help revive my depleted resources.  I am hoping that with all of this I will be more patient when Freya and Rona fight over the simplest of things.  That when Freya refuses to do her Rhythmic Movement therapy, I can sweet talk her into it rather than get annoyed and walk away.  That I can declare time most days to help prepare her for first grade, practice rhyming, letters, counting, and articulation.  That when she is whining for something I can help talk her through it rather than just snapping at her in irritation.  

Parenting itself is hard and demanding and every parent knows what it is to just be done.  We all have those moments, when our well runs dry.  But when you have a child who needs more from you, who requires a better understanding and compassion of how they think and operate, and your well runs dry...then what?  How do you wade through the murkiness of constant irritation to an ability to nurture yourself, so that you may nurture others?

I don't mean to paint a dark picture.  Life here is still sweet and good and full of love and some laughter.  But I feel drained, I feel spent.  I feel as if any moment one of the little ones will start a fight with the other one and I will run screaming from the house and be half way to Mexico before they work through it.  Every question, every comment, every 'hey mama' is like someone poking at an open wound on my body.

This is not the mother I want to be.  I want to be the kind, loving, attentive and patient mother again.  I want to have the energy and focus to sit with them for art projects and games.   I want to feel inspired to teach them about our world and our lives, so they can move through this place with understanding and recognition.  I want to be the soft place they come to for comfort and sweetness.

Now if I can just find that damn oxygen mask...

A Call for Your Stories

So I'm going to kick this blog thing up a notch and start a podcast.  What?!? 

I have come up with almost everything, but a name (my daughter suggested "The Struggle is Real" but that seems to be taken...update: the name is "Walking with Freya; A Journey of Special Needs Parenting).  I have a format in mind, 3 episodes written and a strong vision of my intentions (plus experience creating a podcast - check out MEND; Life at the Seams ;-) if you're interested).  I want to create space for parents and care givers of children with special needs (young or adult) to discuss the challenges and successes openly and honestly.  I am not looking to sugar coat or fluff the very real challenges we sometimes face.  Ultimately my vision is to create a space to laugh, I think humor goes a long way to healing and moving on.  I want to create a space to cry, because that is inevitable.  I want to create a space to share our stories and to educate each other and ourselves about what our children need.  I want to create more people in the world that have knowledge about our children so they can move more freely and safely in our communities. 

We will start with the premise that ‘yes, of course I love my child with a full heart, as much as I love my other children (sometimes more) and do my best to give them what it is they need’.  As a friend once eloquently put it, 'parents can call their typically developing kids a-holes when talking to other parents, but you can't say that about a child with special needs'.  Even when they may be acting like an a-hole.  (note: if this last sentence offended you, this might not be your podcast)

Now, that is out of the way, we know where we stand and there is no explaining to be done.  So carry on, tell me about the moment you were so overwhelmed and frustrated all you could do was scream into a pillow, let’s talk about the time you were so terrified for your child fear gripped you into silence, or when the grief was so heavy you fell to your knees in shuddering tears. 

Let's giggle about that time in speech therapy your daughter was trying to say "I have a clock", but didn't quite get the 'l' sound in there, share the joy when someone tells you how special your child makes them feel, or sing the praises of the western doctor committed to reaching as many families as possible and sharing the sometimes miraculous benefits of supplements.  

I want to tell birth stories, diagnosis stories, talk about the fears and victories of being in school and having friends, the therapies that work, the ones that don't.  I want to learn about disorders I've never heard of and learn more about ones I do.  I want to expand our knowledge and our understanding of each other so that our community grows.  

To this end I am asking for people to share their stories with me.  I would like to read your stories on the podcast, names can be attached or not.  I am also a writer so please allow for any editing that will enhance the story telling aspect without changing the details or the story.  I will also be telling my story along the way and interviewing others when the story needs to be told by the person. If you are interested in learning more about my vision or wish to share your story you can email me at walkingwithfreya@gmail.com    Thank you so much for any interest and I will keep everyone posted about this project.