Changes coming soon…

I haven’t been keeping up with my blog like usual. I posted this on my facebook page but not here.

Many things are changing around here, P’s habilitation program is starting, it’s summer break, we are in food trials for A.

But the biggest change is soon to come!13321671_873012536136872_7907162344359572611_n.jpg

We are so excited to announce that 12/29/2016 (or sooner if it goes like the other two) we will be adding to our family. The boys are beyond thrilled and they talk about baby every day. It is so awesome to watch them bond before he/she is even here.

Anyways I hope to be back to my old ways soon 🙂

To the Ones Who Have Never Heard of Eosinophilic Esophagitis during National Eosinophil Awareness Week

Today, May 15, 2016 is the start of National Eosinophil Awareness Week. Prior to October I would not have known what that means, or what it could mean to a family.

Our older son was diagnosed with Eosinophilic Esophagitis (EoE) back in October 2015. With no warning we had to cut soy, wheat, milk, eggs, nuts and tree nuts, and fish and shell fish. After 6 months or so of being seen by a GI (years after I tried to get a referral) a scope was finally done which led to his diagnosis.

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What is EoE? It is one of many Eosinophilic Disorders that specifically targets the Esophagus. Basically certain trigger foods cause a reaction over time that can become life threatening. It appears differently in all patients, but usually involves gagging and vomiting, stomach pain, bowel issues, and more.  The diseases are generally managed by food avoidance, medicines, and even feeding tubes if the patients lose too much weight. These diseases are very rare and are often missed or not diagnosed until far too much time has passed.

With our son, there had been massive gagging and vomiting since he was a baby. He had bouts of eczema that put him in the ER, only to be told I had to stop drinking milk while pumping for him. He had projectile vomit from formula when I finally gave up pumping after 7 months. He had projectile vomit from eggs. He had colic, restless, just a fussy baby.  I had concerns, but this was my first child. Our pediatrician (who is wonderful) brushed my concerns away of that of a new mother, possibly overestimating the amount or frequency of vomit. I became pregnant with our second son right about 7 months after the first was born and we were just trying to get through the day.

Our son was non-verbal until he was past three years old. Again my concerns were brushed aside, and early intervention told me he would qualify for speech, but all of “the rest” of what I was seeing must be in my head. [After a long journey, he was diagnosed with Autism, General Anxiety Disorder, and Sensory Processing Disorder as well, but that is a story for another time]. Once he turned three and for the second time was having bowel issues and stool leakage, I was told that it was behavioral and there wasn’t anything the pediatrician could do. I wouldn’t accept that and we finally got a GI referral.

After months of trying things like Miralax (which solved his bowel issues) we were still getting gagging and vomit and it was occurring more and more frequently. A scope and biopsy was ordered and the rest was history. Except what sort of reality is this? That was not the final answer. Eosinophil diseases are so rare and understudied that the only type of treatments are taking foods out and scoping over and over again to try and find the trigger. What sort of future is that for a small child?

Let me try and tell you. We went four months with a stronger reflux medicine and  the top 8 removed from his diet (soy, wheat, milk, eggs, fish and shell fish, nuts and tree nuts). During that four months, that I hadn’t planned for, was totally unprepared for, we had to deal with Halloween, Thanksgiving, family trips, Christmas, school parties, and PLENTY of people who thought we were “helicopter food parents. ” This adjustment was one of the hardest our family has had to make. Imagine not being able to EVER just grab something at a restaurant or drive through. Not even fruit or salad due to the risk of cross contamination. Imagine a child who has to eat “special food” during snack at school, and teachers who have 18 kids and no matter what they try to do accidents happen. Within the first month our son had gotten the wrong food at school twice. If he had been anaphylactic the consequences could have been so much worse, but instead we had to start our elimination diet over. Twice.

But at the end of February, somehow we had a clean scope! But that isn’t the end, or even close.  Now we knew something (or more than one thing) of those 8 foods was his trigger. Some unlucky families have to go far beyond the top 8 to find their trigger. What’s next? Well we start over a year of food trials. We have to re-introduce one food at a time, and scope between each trial, to see which one, or ones are the trigger foods. We have to monitor weight and height monthly, because if weight starts to drop we have to first try a elemental formula that costs about $400 a month or even go to a feeding tube. So far we have been lucky. This last month his weight dropped a little bit but otherwise we are actually having weight gain. He is finally not throwing up and this plain (expensive) food is making him feel so much better.

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We hope to figure out which foods are the trigger within the next year. We also were told to do allergy shots for his environmental allergies, and told that may help with the EoE as well. But no one knows for sure, and right now I think he has enough on his plate.

So why am I explaining this to you? I just want you to think twice before you roll your eyes at the mom who brings her child their own cupcake to the birthday party. Understand why someone is taking so long in the grocery isle, reading every single label they put into their cart. I want you to think about your judgment when you tell someone “just once won’t hurt.”

But most of all, the theme of National Eosinophil Awareness Week is Education. Please take the time to learn about these diseases, especially if someone you know is dealing with them. There is information available at Apfed (American Partnership for Eosinophilic Disorders) at http://www.apfed.orf or even with the Cured Foundation at http://www.curedfoundation.org . #NEAW2016

 

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To the Special Needs Parent Who Is Trying to Figure Out Their Guilt

Our kids can take a lot of management, for a lack of a
better term. We have to manage their schedules, their food, their environment.
There are doctor’s appointments, case managers, therapy appointments,
pharmacies, teachers, insurance companies, almost an endless list of people we
need to call or email each day. In my experience so far, one parent (or the parent if you are the only one)
becomes responsible for managing this chaos. Each family finds their own way.
Sometimes one parent works, sometimes both parents work. The money it takes for
all of this, even with state assistance, is staggering.

What this all brings is guilt. Mommy guilt, daddy guilt,
guardian guilt. There is only so much time in a day, and there are things that
HAVE to be done. The laundry, the groceries, or even working to survive. There is no
way we can exist without doing these vital things, but taking any time away
from your children can make you feel horrible.
You can be a stay at home mom, who rarely gets to spend any time with
any of your kids. You could be the working parent whose son tells his class
Dad’s favorite thing to do is work. There is no easy answer. I’m not writing
this to try and give you one right now. What I want to do is figure out a way
to make this unavoidable guilt a little easier for you to bear.

You know, they always say our kids are so different and when
you meet one person with autism you’ve met one person with autism. This may be
true, but there are SO MANY similar things that we all experience in these
uncharted waters. We tend to hold everything in thinking no one can understand
what we’re dealing with.

 
First, I want to tell you that you are not
alone.
  Recently another autism mom started telling
me about how she felt so guilty because the time she should be spending with
her youngest she had to use to make these necessary calls and arrangements.  The
things she was saying could have been coming from my own mouth. Then I heard it
again from another mom. A father mentioned how he feels guilt when after
working a long week to support his family or working that extra side job to
save money for something crucial to his child’s well being, he needs to take
time for himself, to keep his head grounded. It doesn’t matter what type of
parent you are, you are always going to feel like you’re not doing enough. It
is the nature of loving your child to want the absolute best for them.

Next, I want you to know that there ARE people
who understand.

They may not be right next door. They may be someone you see in a waiting room,
or talk to online. It doesn’t matter who or where they are. What matters is you
share the load of guilt you’re feeling. You share the ridiculous nature of the
life we lead. Find. Your. Village. If you can’t find one? Come find me.

On that note, I can’t
help myself but mention this-  If someone
shares with you? Be supportive. Take the time to listen when someone opens up.
You may be the first one they’ve told. DO NOT BE JUDGMENTAL. Our life is not a
competition. We are all just trying to get by, one day at a time. There are far
too many divisions in these communities that only serve to give more guilt and
anger.

Lastly, if you find a
way to handle this guilt, please share it with the rest of us.
We can all
use another method of finding sanity.

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Let Go

 

There are so many different parts to the journey of autism. Sometimes you think you’ve got things under control and then it all falls apart. Sometimes you just manage to get settled and then suddenly you’re starting  all over again with another child.  Sometimes you think you have a strong fierce warrior momma exterior, and then you realize inside you can feel everything. Every. Single. Thing.

I wish what I’ve learned I can teach to my children so they don’t have to learn for themselves.  That’s not the way this works though is it? No matter how badly we want to protect them from pain, we can’t do everything. We can’t prevent everything.

We can’t stop peers  from telling him to stop following them (since he can’t read them enough to know when they’re done).  We can’t help the other one understand that things won’t  always happen in his specific order. Most of all, we can’t stop from seeing ourselves in them.

Parts of this road have been bumpy, jagged, demolished.  I’ve felt lonely, confused, torn apart.

But just stop for one minute and think, can you let go of that?

Can you let go of the parts that really don’t matter? For example, does it matter what other people think of you and how you manage your life and your family? Honestly do they actually have any idea? That nosy woman at the grocery store, she has no idea that you’ve been awake since 2am. Again. Basically for four years straight now. The family member who thinks you’re a ‘tad’ bit overbearing has never seen your child in the midst of a sensory meltdown, completely locked up to the point of self-harm. No wonder you can scan the room for potential threats or triggers as good as a Navy Seal.

But for real, all of that? I’ve been there (frequently). I hate that I feel things so strongly sometimes. But what I have realized that holding on to all of the things that I can’t change was stopping me from advancing. Literally holding me back. I need to be the best version of me so I can help them become the best versions of themselves.

I choose to let go of the fear, the anger, the pain. Of course they may come to visit, but they will not rule me. This isn’t an easy path, but so what if the road is uneven.  It is a lot easier to navigate without holding on to the extra baggage.

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A Thank You To Ms. Rachel Platten For Your Song ‘Stand By You’

To Rachel Platten,

I know you don’t know me, I’m one of the many fans you have found along your way. I wanted to share with you that your song ‘Stand By You’ has allowed me to feel hope and love in ways I had previously not known were possible.

Let me give you a little background for this letter. I am at a hard place in my life. Last year my son was diagnosed with autism, general anxiety disorder and sensory processing disorder. This year he added another heavy diagnosis, EoE (Eosinophilic Esophagitis).  Shortly after we were told my younger son had an extremely high IQ, but also has autism, general anxiety disorder, and the signs of obsessive compulsive disorder.

These things were hard for me to fully accept, although I may have known inside for some time. These things changed who I am as a mother, and who I am as a person.

A few months back, a dear friend of mine sent this song to me and told me this song was written for us. This friend has been there for me no matter what. This woman is so strong, the most mature and clear headed person I know. I could go on for days on what she has done for me, and for herself. Still as we get older, have more kids and responsibilities, it becomes harder and harder to find the time together. Still she, another woman, and I try and make sure to see each other from time to time and stay in touch via text, probably more often than our husbands would care for. This song has become our anthem.

She sent this to me and I cried. This song brought me to my knees. My son had just been told he could no longer have milk, soy, wheat, eggs, nuts/tree nuts, and fish/shell fish until we could hopefully figure out what trigger food was making his esophagus close. I was thrown into another whole world, especially when paired with the picky eating and sensory issues. I was broken and fearful.

Relationships have always been hard for me. Friendships are few and far between because I have a tendency to stay on the peripheral, pushing people away rather than opening up. Through the support my friends haven given me, through listening to your song, it has pushed me to be someone who is there for others. It has given me hope that I can do this. 

This song to shows me that I do not have to be alone. It pushed me to open myself up and accept others, in what could have been a dark time. This song, and the support behind it, has allowed me to grow into the person I was meant to be.

Ms. Platten, I’m not sure if you wrote this song based upon a personal experience or if the song was sent to you by a muse. I’m not even sure if you wrote it, co-wrote it or just chose to create it.  Still, I believe every word with all of my heart, and you express them so beautifully. Thank you for bringing this amazing song to creation. Thank you for giving hope a song.

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To the Women and Families in the Waiting Room of our Pediatric Therapy Clinic:

To the women and families in the waiting room of our pediatric therapy clinic:

It is so often that a special needs parent feels emotions that have been described by many as similar to Post Traumatic Stress Disorder. This comparison is often brought up casually by psychologists, the internet, and for me lately in our pediatric therapy clinic family waiting room. Sometimes you are lucky enough to find a village where you can talk openly about things like this.

I never thought I’d have a village, and sometimes on the bad days I still feel like I don’t, no matter how well meaning friends and family are. Somehow I was blessed enough to find myself in the same therapy waiting room with all of you week after week, Wednesdays  from 1-2, and Thursdays from 12-2. As the weeks and months went on, as our kids had ups and downs witnessed often by the entire room, I realized that I may not be as alone as I had thought. 

The more I made myself close my book, stop checking emails and scheduling, and actually talk to all of you the more I realized that there are people who get it. Even in the best circumstance I can be socially awkward, generally having to think about what I say before I say it. In the beginning it was so much easier to just take the time to myself, getting things done. Sometimes I just  went into therapy with my son. I spent the weeks watching the rest of you talking about your lives, chiming in once in awhile, but sticking to myself.  Eventually I allowed myself to really try to connect with these women, rather than shutting myself in.

 I heard stories that were similar to mine, the fears and the triumphs. The not sleeping to the hyper-vigilant state we are in, constantly scanning the environment for potential triggers and dangers.  I found myself wondering with concern if a certain family didn’t show because of the big doctor’s appointment you knew they had. But even beyond all of that, I experienced people who didn’t even know each other before sharing their lives.

You were lifting each other up with love and support whether you even knew it or not.

The feeling of sharing even just a few minutes with another person who understands the scheduling nightmare that is a special needs parents life is almost miraculous. Someone who isn’t bothered if you have to stop mid-sentence to immediately take a call from the support coordinator, doctors office, school, or any of the other people you have on speed dial. Or even if you have to leave without notice to attend to a meltdown or toileting accident.

So fellow therapy moms (and dads) please let me take a second to thank you for welcoming me. Thank you for letting me see that there are people who understand. There are other women who can share so much with just a look. I can feel lonely in this crazy busy life but I am not alone (unless I choose to be).

Last week one of the other moms shared one of her secret worries, ‘what will we do when we don’t have this?’  (This being the constant running around, therapies, appointments, etc). Well new friend, I have no clue, but I do know if that day ever comes I hope we will figure it out together.  Because fellow therapy families you have shown me that although this may be a road less traveled, it is a road better shared.

So if the time comes that I do not find myself here, in this place with therapies and appointments, I will always remember the strength and community you have given me. This gift of friendship is one that I can take with me for the rest of my life, and for that I thank you from the bottom of my heart.

This article can be seen on  The Mighty at http://themighty.com/2016/02/to-the-parents-i-used-to-shut-out-in-the-therapy-waiting-room/

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Revising My Resolution

Not too long ago we were featured as one of the ’22 Resolutions Special Needs Parents are Making for 2016′ (http://themighty.com/2015/12/22-resolutions-special-needs-parents-are-making-for-2016/?utm_source=Facebook&utm_medium=Mighty_Page&utm_campaign=GENERAL).  All of these were so great, and I was so glad they chose to include ours as well.  I was #8 ‘To take some time to just breathe. To let them just be kids and let me just be their mom.” I wrote that with such high ambitions for the year.

When I think of the progress my older son has made since we started this journey  about this time last year, I am so proud. But sometimes I have to think, how much is too much?  Anyone who knows my boys knows there is no shortage of play, outside time, marble time, whatever time. But still sometimes I feel like no four year old should have a schedule like this. 

It’s a hard balance to figure out which therapies are right for your child. If you’re seeing progress why even consider that there are too many?  The more I think about it, the more I begin to think that perhaps I am being selfish. Perhaps I am struggling with what I wish it looked like. What every mom has in her head as the ideal life, play dates, free time (ha), naps (HA). 

My sons have tons of play time every single day, and now we are lucky enough to have obtained the services we fought so hard for:  ABA, Speech, Occupational Therapy, Developmental Preschool, the list goes on.  Each and every single one of those things I fought for with tears and phone calls, evaluations, the long waits, appeals and finally approvals. And you know what? These things are HELPING them. They are doing new things they were not able to, no matter what I tried. They are having (supervised) peer time, learning to regulate themselves and their emotions, and best of all they are talking more and more each day.

Once again I have to take a step back and think about my resolution.  Maybe I need to remember what it means to be THEIR mom before I can resolve to ‘let me just be their mom’. I already know being their mom means you never know what to expect. The atmosphere and the game plan changes by the minute. It means you may be celebrating the first time your son uses the potty in a year, and then the same day crying alone in the bathroom after they went # 2 in their undies again. You may be rejoicing that he is trying new foods at feeding therapy, and then suddenly be diagnosed with another rare disease and have to take away 8 entire food types. It means laughter and tears and constantly changing demeanors. It means watching little boys trying to figure out how to navigate the world, sometimes in the most exceptional ways.

I already am ‘just their mom’. I already love them more than I could ever express and more than I ever knew possible, hard times and all. They most certainly are already ‘just being kids’.  I can see them across the room playing cars waiting for me to finish so we can go out and play.  I do need to ‘take some time to just breathe’, most special needs parents do.  I say almost every day, how can I remember the six medicines he has to take every day in different forms and at different times and I can’t ever remember my one night time allergy pill? We do an excellent job of taking care of our kids but maybe not quite so good at taking care of ourselves.

So maybe what my resolution should have been was for me to take some time and just breathe, and to accept that our life is fine as it is, packed schedules and all. It’s better than fine.  We learn as we go, mistakes and triumphs. Our crazy life is blessed, each and every minute that we have together.

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