Tag Archives: special needs

One step

Standard

Before our sweet Madeleine came along, we got a lot of advice from other parents. Still to this day, the two most important pieces came from a colleague of mine, and a colleague of Eric’s.

A woman at my work said to me, “You are never going to be or feel ready. So just do it when you think it’s right.”

A man at Eric’s work said to him, “When things aren’t going well, don’t worry, they will get better. When things are going well, be warned, they will get worse.” The natural ups and downs described so easily.

When Madeleine arrived, people told us,

“Don’t worry, it will get better.”

“All babies cry.”

“You will get to sleep again.”

Amongst a number of other things. I often reflect on these comments and think that they need some changes.

Don’t worry, it will get better. It might not get better, but you will get better.”

It’s true that as parents, you figure things out, and you get better. But, it’s also true that those memories of the first time spent with your baby are engrained and tough to remove.  When you think you’ve been able to move on, you are expecting a second, and the fear and panic from those days comes rushing back. You remember the isolation, the loneliness, the exhaustion. You remember how it felt as though nobody believed you. You remember the feelings that to so many people, you are simply a carer-of-baby, and not a person who is equally as important as baby.

Then you cross your fingers and pray that next baby will be different. Next baby won’t have colic. Next baby will want to be soothed. Next baby will smile and laugh. Next baby will sleep for longer than an hour at a time when he or she is 9 months old.

But, then you’re hit with the realization, that next baby is the least of your worries, and that first beautiful baby of yours is who you are most worried about. Most people will tell you not to worry, first baby will adapt. But, most people have not lived in your home. Most people have not lived through what you have lived through. Most people don’t can’t understand.

All babies cry. All babies cry. Some cry more than others. Sometimes crying means that something is wrong. You are probably right if you think your baby is crying too much.”

Yes, this is true that all babies cry. It is actually not helpful to tell a new mom that all babies cry. She will be too polite to let you know that this is something she has known for many, many years. She will forgive you for saying something like this, because she knows that you’re just trying to be helpful. She won’t need you to know the myriad of reasons she discovered that her baby cried more than most. She won’t have to, because someone else will have validated her experience for her. She will share the bits and pieces that she’s comfortable sharing, with the people that she feels safe sharing them with.

You will get to sleep again. You will get to sleep again… in 18 years.”

The level of exhaustion I felt in Maddy’s first year is something I’m not sure I will ever experience again. It was a true life lesson in why sleep deprivation is used as a torture method. It was an experience where exhaustion played at sanity. I remember waking up to a crying baby, and physically not being able to move. I would try to will my body to get up, but it was not possible.

Over time, sleep does become more consistent. It’s true that you will sleep more than when baby is 3 months old. But, it’s also true that you might not sleep through the night again for many years. You might have a child that doesn’t sleep, no matter what you do. You might be woken 7 times in a night when your child is 3, on a regular basis. You might have a child who takes hours and hours to settle into sleep, no matter how consistent and routine-based your evening is. Your expectations of sleep will change – and you will somehow figure out how to be productive with all of that waking. You will let your body be your guide, and take it easy when it needs you to.

The last three years have been a time of ups and downs, with unexpected curves, and needed plateaus. It has been a time of wild growth, and of deep love. We have learned, we have been hurt, we have been tested, and we have been cared for.

There was a time that I wasn’t sure that I could manage a second baby. There was a hesitant decision to listen to our hearts. Now there is fear and uneasiness. We are entering a kind of work and preparation I never thought I would need to do to expand our family, but we are showing up each day, and taking one step at a time.

 

 

Advertisements

We Moved for Maddy!

Standard

On June 2, we walked in the Walk Now for Autism Speaks event. We walked with 14 other family members, and raised $2280. Thank you to everyone who walked with us, those who were with us in spirit, and those who donated.

fam

June 2 was a really special day for us. We felt surrounded by strength. I’m sure any parent understands this, but when someone shows love and care for Maddy, I feel loved and cared for. It was a day where we could let go, and just be.

mama

It conveniently came just a month and a half after Maddy’s diagnosis, and was the perfect way for our family to “begin” our journey. It’s a day I will not soon forget. I will hold the memories in my back pocket to use when we’re in some of our tougher moments. I will remember the kids wearing their oversized t-shirts, I will remember Chloé walking the entire way – in the rain, I will remember the crowds of families who understand, and I will remember our friends and family who showed up for us.

Thank you for taking this journey with us. We could not do it alone.

gals

A whole new world

Standard

Since Maddy’s diagnosis we’ve been all kinds of busy over here making appointments, faxing reports, and doing intakes. A whole new world of opportunities has opened up with those three little words: autism spectrum disorder.

IMG_2180We had a multi-disciplinary meeting yesterday at Maddy’s daycare – an hour for everyone to come together and get on the same page. It was an overwhelmingly positive experience. We are so blessed to have an amazing support team behind us, who are cheering Maddy on every step of the way.

I was so humbled to hear Maddy’s daycare very openly and honestly tell us that they were confused, and just didn’t see it – without pushing any sort of agenda. All they wanted was to understand. It didn’t take long before they did. Our support team was able to explain in a much more articulate manner than I would have been able to. At the end of the meeting they told me, they understood, and their new understanding allowed them to see it.

I picked Maddy up today at my usual time. When I arrived, one of Maddy’s teachers started by sharing with me some of Maddy’s sensory quirks she had not really noticed before. Our meeting had given her a new lens and she was picking up on cues she had previously missed.

She went on to tell me that at one point in the day, Maddy was starting to become agitated (or, for those of you who are familiar with the phrase, her engine was running too fast). There were extra people around, creating a lot of noise and chaos in the room. Maddy’s teacher decided to try something we had talked about yesterday – deep pressure. She asked Madeleine if she’d like some squeezes (this is what we call them at home). Maddy said yes and proceeded to show her teacher all the places on her body she wanted squeezes (I know – amazing!). With tears in her eyes, the teacher said to me,

“For the first time, Maddy looked at me like I finally understood her.”

My heart just about burst into a million little happy pieces. We might be taking baby steps, but we are moving leaps and bounds.

The day we’ve been waiting for: Diagnosis day

Standard

It’s been awhile since I’ve sat down to write. I’ve been spending a lot of time processing information. I’ve been processing since April 26.

April 26, 2013, the day the words Autism Spectrum Disorder officially entered our world.

I returned to my desk at work late afternoon after a whirlwind of meetings and a team lunch to find an email sitting in my inbox from the clinical psychologist (Dr. K) we had visited a week earlier. I opened it expecting a question or clarification from Dr. K. It wasn’t a question. It was an email indicating that Madeleine had a provisional diagnosis of Autism Spectrum Disorder.

I’m still not quite sure what it felt like to finally see those words. In all honesty, I didn’t feel much except a surge of adrenaline that had my hands shaking. I was not surprised, but I also wasn’t expecting it. My supervisor let me leave work a half hour early, because I couldn’t concentrate, and really, just wanted to be near Eric. I’m not sure why, but the words she said to me just burned into my brain, “Go home, be with Eric, and enjoy your weekend.” I don’t think I’m ever going to forget those words.

My commute was just long enough to allow myself a good cry. I wasn’t crying because I was sad. I wasn’t crying because we had a diagnosis. I’m not really sure what the exact feeling that was attached to my tears, except I knew that it was my body releasing all of the frustration of the previous 22 months. I felt like a huge weight had been lifted from my shoulders. In a sense, I felt a new kind of freedom. Someone had heard us.

I’ve read a lot of blog posts about others’ experiences or thoughts on “diagnosis day”. Some really great reads I’ve found are here, here, and the one I connected with the most is here. My experience is not quite like anything I’ve found online so far, which I guess is to be expected. Each family has a different journey, including diagnosis day. What I did find in each story was a hidden gem that I connected with, and that allowed me to feel connected to parents I have never met.

I think that our process began when we first saw the words “Suspected Autism Spectrum Disorder” and we’ve felt any emotion you could name since then. What I find the most interesting, is that we left our assessment process feeling more positive than we had felt in a long time. Five days later when I read Dr. K’s email, I felt more at peace than I had in over a year. We have a name to describe our experience, and, although the label doesn’t change much in terms of who Maddy is, it does give us access to a world of information that applies to Maddy. We will be better able to fill Maddy’s toolbox with the most appropriate tools, and she will thrive.

Our therapists often very correctly tell us that it’s not the label that’s important – and I agree with them. You don’t need a label to identify and work with strengths and weaknesses. But, I gotta tell you, as a parent, that label sure brought me a sense of inner calmness that I can’t eloquently describe to you.

I do have some feelings about the diagnosis that don’t exactly pertain to the diagnosis itself:

  • I don’t particularly like that this diagnosis has tied us to a longer term investment in inconvenient therapy sessions, daycare/school meetings, and extra life challenges as Maddy is growing and learning.
  • I am angry at how the public system treats families, and frustrated more than ever by our two-tier system that prevents many families from receiving the support they desperately need.
  • I’m not particularly fond that we’re now part of a world that is full of conflict (philosophical, theoretical, and diagnostic…). We’ve already been exposed to some of the politicized aspects of autism already, and it’s not exactly a walk in the park.
  • I’m not happy that Maddy will have to live in a world where some people do not accept, or even tolerate, differences. The differences that make the world the interesting place that it is.
  • I’m really not thrilled that I have to be more assertive than I’m comfortable by nature, but I am willing to concede that this might be a good thing.

You know what’s not on that list? Anything about Maddy being on the autism spectrum. All of those things I listed could be changed without changing who Maddy is. The public system could be much better at working with families, people could be kinder to one another and acknowledge that different opinions about issues related to autism are okay – we don’t need to fight to be right, the world could become more accepting (not just of people with autism, but of everyone), and, well, I could learn to be more assertive.

If all of those things were to happen, my life would feel a lot less stressful without changing the daily challenges that our family might be working through, or changing who Madeleine is.

We’ve decided to make the Walk Now for Autism Speaks event a family day to mark this important step in our journey. I know that Autism Speaks is one of those hot button issues in the autism community, but we’ve decided to stand with them on June 2. If autism is a cause close to your heart, or you have a few extra dollars looking for a donation home, you can find our team here: Movin’ for Maddy!

Diagnosis day has been a great reminder to us of how lucky we are to have friends and family who are accepting of all kinds of differences in people.  Maddy couldn’t ask for better (great) grandparents, (great) aunts & uncles, cousins, second cousins, or family friends to support her with the love and respect that she deserves. We know that everyone will be waiting patiently with us to see the amazing things that Maddy will do.

 

Bean there, chewed that

Standard

We had a breakthrough tonight! It was SO exciting!

We have been working on some strategies to address Maddy’s oral motor struggles. We were warned that it takes a lot of work for slow progress, and they weren’t exaggerating. But, that means when the breakthrough happens it’s time to jump up and down cheering – and really, who doesn’t like cheering?

One of the strategies is – get ready for it – chewing with our mouths wide open. We tend to only practice this strategy at home alone. We show Maddy how we move the food with our tongue onto our back teeth. We use our words to talk about putting the food on our back teeth. Then we do big, exaggerated chewing.

Although we’ve been doing this for a long time, Maddy has really struggled with being able to move the food to her back teeth, especially small foods that move with little effort. Tonight, we had black beans as part of our dinner. Maddy kept putting a bean in her mouth, and when she would imitate our chewing, we could see that the bean was actually sitting under her tongue (though, she was having fun doing the big, exaggerated chews, imitating my sound effects and using her whole head to nod).

After we practice chewed for a few minutes, Maddy let Eric put his finger in her mouth to hold the bean on her back teeth. But, every time her teeth felt resistance, she would stop the biting motion.

We decided to take it to the next level. We excitedly had her watch the bean get all mushed when we would chew. The first time she watched, she gasped excitedly – the bean looked different! The next time Eric held the bean in place for her, she went for it. Maddy gave the bean a huge chomp! Fortunately, she didn’t give Eric’s finger a huge chomp 😉 Maddy immediately spit out the bean to examine it in full detail. She was a bit scared by it, but baby steps, er, toddler steps.

Maddy chewed a bean! Huzzah!!!

 

The Misunderstood Child

Standard

A poem about children with hidden disabilities by Kathy Winters.

I am the child who looks healthy and fine. I was born with ten fingers and toes. But, something is different, somewhere in my mind, and what it is, nobody knows.

I am the child that struggles in school, though they say that I’m perfectly smart. They tell me I’m lazy — can learn if I try — but I don’t seem to know where to start.

I am the child that won’t wear the clothes, which hurt me or bother my feet. I dread sudden noises, can’t handle most smells, and tastes — there are few foods I’ll eat.

I am the child that can’t catch the ball, and runs with an awkward gait. I am the one chosen last on the team, and I cringe as I stand there and wait.

I am the child with whom no one will play — the one who gets bullied and teased. I try to fit in and I want to be liked, but nothing I do seems to please.

I am the child that tantrums and freaks over things that seem petty and trite. You’ll never know how I panic inside, when I’m lost in my anger and fright.

I am the child that fidgets and squirms, though I’m told to sit still and be good. Do you think that I choose to be out of control? Don’t you know that I would if I could?

I am the child with the broken heart, though I act like I don’t really care. Perhaps there’s a reason God made me this way — some message he sent me to share.

For I am the child who needs to be loved, and accepted and valued too. I am the child that is misunderstood. I am different — but look just like you.