Monthly Archives: September 2012

I will love you, again

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Living with a child with special needs is a multi-layered stressor. You have the exhaustion of day-to-day struggles, meltdowns, and frustrations. Then, you have the non-stop emotional baggage that you carry everywhere, and I mean everywhere, with you. You also have to deal with the crappy responses from others, and the awkward social situations you find yourself in (like in a library baby group with the moms all gasping and staring as your 15 month old child beats up on an 8 month old). You also have guilt about everything – the what if’s, and what else’s. You try to learn to compartmentalize this guilt, but it has a nasty way of creeping back inside your head when you least expect it. You worry about things you never thought you’d worry about, like whether or not your child will ever have friends.

You also find yourself falling away from your other relationships – you forget to ask your friends about the important things in their life, and you find it hard to talk about anything other than your child with your partner. Some days you feel overwhelmed and consumed by stress, and have to drag your exhausted body out of bed against every other grain in your body.

We are trying to tackle these one at a time. Most recently, Eric and I have been putting in considerable effort to nurture our relationship. My sister advised that we re-frame what the term “date” means. She suggested we start a game of Scrabble and play two letters a night. But, realistically, we often find ourselves in bed at 8 or 9pm with a messy house, dirty dishes, unwashed laundry, and little energy. If we’re lucky we have prepared food for Maddy to bring to daycare with her the next day, but most likely we’re in bed knowing that we have to wake the next day early enough to get her food prepped.

One of our more recent successes we’ve had with focusing on our relationship was pretty easy to fit into our chaotic life. We wanted to force ourselves to not talk about the challenges we’re having as a family. It’s damn hard. Our family challenges consume both of us, and we can sit and have the same conversation a hundred times and still feel like we need to have it again. I can have a good cry and the next night need that same release as if it has been too long.

It’s so hard to not talk about our challenges that we have to force ourselves into another topic. One way we do this is by taking turns saying what we love about the other. We go on, and on, and on, until we’re saying silly things like, “I love when you buy me chips,” or “I love your face.” But you know what? It works. It forces us to focus on something other than Maddy, SPD, or PDD. We’re not brainstorming ways in which we can get her to eat, or sleep, or play… or even smile and laugh. We’re thinking about us, and why we’re happy we found each other, and why we got married. I promise it works – just try it.

We know that nurturing our relationship not only benefits us but that it also benefits Maddy, and we’d do anything for that little girl. In what ways do you and your partner re-connect during tough times?

What’s in a label?

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It’s been a while. I’ve been trying to process our current situation and just haven’t had the energy to write about it. It’s not just that. I also don’t really know how I feel about it… so how do I write about something like that? But, I’m getting the urge now that I have to write it out. Maybe in writing this I will discover how I feel.

I’m not sure when Eric and I started seriously considering this, but in the past little while, we starting thinking a lot about PDD (otherwise known as pervasive developmental disorder, or the autism scale) and whether or not it was possible that Maddy might have it. At first it was kind of a fleeting thought, one of us would mention it and the other would say “Ya, I’ve thought that too,” and then we would both shrug it off and carry on with what we were doing. We figured that our therapists might one day mention this possibility to us.

We then had two tough days with Maddy (the days were tough, not Maddy’s behaviour). We had the chance to observe her in a group setting, and then on a play date with a handsome little guy who is six weeks older. Everything our gut had been telling us for a little while became so evident in these settings. Delays that we already knew Maddy  had, just became so glaringly obvious, we didn’t know what to do. So, we obsessed. We read, we watched youtube videos, and we read some more. We actively tried to teach Maddy some of the milestones she was missing (with some success).

We were fortunate enough that we didn’t have to obsess for too long. We had already scheduled a visit at Maddy’s daycare for her Occupational Therapist and Behavioural Therapist (BT), followed the next day by a post-daycare home visit by the BT. I couldn’t keep it in any longer and I just straight out asked the BT – was PDD something we need to keep on our radar?

I wasn’t surprised at all when she said yes. She said that they’re finding Maddy a tricky case – a lot of her delays are congruent with a PDD diagnosis. On the other hand, some of the skills she has developed aren’t typical in a child with PDD. It’s exactly why Eric and I couldn’t quite decide whether we were on the right track, or worrying a bit too much. The BT confirmed that Maddy’s behaviour is atypical (and she saw her on two of her good days). That being said, the BT believes that there are enough red flags, that Maddy could be a more atypical presentation of PDD. So what can we do about it?

We’re going to start with a three-week intensive therapy program that will teach her some of the skills she is missing – like how to respond to her name, how to more consistently use gestures, how to imitate vocal sounds, and how to purposefully play with toys. After this program, the BT believes they will have a better idea of whether or not Maddy is delayed for no apparent reason and can catch up, or if there is an underlying reason to why she is delayed (other than the SPD).

The BT also recommended that we get a referral to a developmental pediatrician. Not gonna lie, I’m a bit nervous about asking our Dr. for a referral (despite the fact that he’s super nice). I just really feel like a crazy mom who is always bringing things up to him. But, I’ll suck that up for Maddy – it’s funny how as a parent you’ll take being crazy over denying your child services they might need. The reason for the referral is that the wait list is long. If in that time, we discover that Maddy has caught up and is no longer having issues, we simply cancel the appointment. Alternatively, if the appointment rolls around and we’re still having challenges, we don’t have to wait. At that time, she can be assessed for PDD.

The only other thing we can do is wait and be patient. Blech.

So what do we know? Not much more than we knew last week (except that we’re not crazy, there are a lot of PDD red flags in our sweet little girl). How do I feel? Up and down and all around. I’ve cried way too many times this week, and I’m not really sure why. If this is what PDD is, I want that label. I want Maddy getting all the resources she can get. Getting a label doesn’t change who Maddy is, or the challenges we have at home. It doesn’t make things more difficult. It just gives a name to what we’re experiencing. It gives us a support network that isn’t available to us right now. It gives us renewed hope that with more therapy, we can meet Maddy’s challenges and make it so that she doesn’t have to struggle as much day-to-day.

Knowing all of that, it also breaks my heart just a bit. It makes me wish I could change things with a snap of my finger, making it so that Maddy is better able to communicate and make sense of her world. This whole parenting thing is not what I expected. It hurts a whole lot more than I would have ever imagined. Would I take parenting away to get rid of that hurt? Not in a million years.

Ten things I wish I’d known before I had my sensational daughter

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One day, you might have a child with special needs. If you do, it will be difficult extremely difficult, but you will survive.

If you have a child with special needs, you might want to know:

  1. Your relationship with your partner will change – for the worse and for the better. Some days you will feel disconnected from, angry with, and resentful of your partner. Some days you will feel like the luckiest person in the world and know deep in your core that there isn’t another soul on the planet you’d like to struggle next to.
  2. When you discover your child has special needs, some of the reactions of the people around you will disappoint you. Cut them a bit of slack – nobody is trained in how to respond to these types of situations… and no matter how much you both might wish, they will never fully understand what life with a little one with special needs is like, unless they also have had this experience. Some of these people won’t even recognize that they don’t understand, but very rarely are they trying to be hurtful.
  3. The response of other people around you will be the exact kind of comfort and understanding you are looking for. Allow yourself to be vulnerable enough to let these people in. They will be the strength you need when you have none of your own strength left.
  4. Look for some soft places to land, in unusual places. I have found a lot of comfort in a colleague whom I have only known for three months, whose 17-year-old daughter has had similar struggles to Maddy her entire life. I imagine it’s only fate that we ended up with desks next to one another when our organization moved buildings last month.
  5. If you try really, really hard, you will manage to find a bright spot, even on the darkest of days. Sometimes the bright spot will be as small as enjoying a cup of tea in silence, or a surprise phone call/email from a friend.
  6. Sometimes you will let yourself down and you won’t be the parent you want to be. Keep striving to be that parent.
  7. Understand that you can’t “fix” anything. Your child is who they are, no matter what you wish or how hard you work on therapy techniques. The best you can do is guide and support your child. Aim to do this while simultaneously nurturing your relationship with your partner and taking care of yourself. Don’t be too hard on yourself when you’re struggling to find this balance.
  8. Find what is special about your child other than their special needs. Look for their unique characteristics and quirks. Celebrate them often. If you find this difficult to do, don’t be too hard on yourself.
  9. Know that sometimes your child is going to do something that makes your day – even if there are long periods where you both struggle between these good moments. Think of these often and allow yourself to smile. Even better, videotape these moments and watch them at the end of a tough day.

And finally, number ten: Be kind to yourself. You’re doing the best you can.

 

Getting anxious over here

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We had our monthly session with our Occupational Therapist today. Maddy was assessed by a Physiotherapist for her gross motor skills with positive results! Hoorah!

We did some troubleshooting on some of the recent issues we’re having at home, like transition from daycare to home. Our OT explained that it’s the let-down-meltdown we’re likely experiencing. Basically, kiddos try so hard to keep it together all day at daycare/school, and once they’re home in a “safe” environment, they let it all out. We came up with some plans to try to make this part of the day easier and more enjoyable for all of us. To aid in the transition from daycare to home we are going to:

1)     Use a “transition object”. This will be something I give to Maddy when I pick her up from daycare – and that’s the only time she will get it. It will eventually be a signal to her that we’re getting in the car and going home. We have no idea what kind of object we’re going to get – any suggestions welcome!

2)     Once we arrive at home, we will sit in a room with the lights low, with some soft music playing, and I will do some proprioceptive techniques, like joint compression. Our OT warned us that Maddy will likely fight this for a week or so, but to keep at it. At her age, she knows she needs something, but doesn’t know what, and so she’ll fight it until she is able to figure out that it makes her feel better.

3)     We also will be starting to use a timer clock to allow Maddy to “see” when things are coming, like dinner.

4)     Our OT also suggested we start using a transition board – and thankfully, my sister, Lindsay (the speech-language pathologist), is in the process of making us one. This will help Maddy to understand and prepare for her daily schedule.

5)     Finally, our OT is going to do a daycare visit to assess if there is anything else they can help us with (for example, like giving a verbal warning about when mom comes to pick her up in the day), and to troubleshoot some of their issues.

Fingers crossed that we have some success with these techniques.

Another new thing we will be trying is behavioural therapy. Maddy had a very tough day today, and our OT got to witness a lot of what I see at home in the evenings. That, in combination with describing some of Maddy’s issues, our OT indicated that she believed Maddy is showing some anxiety and control issues (particularly severe separation anxiety). Eric and I aren’t clear on whether or not her anxiety is significant and would need to be treated if she didn’t have other challenges, or if it’s significant because of her other known challenges – but, really, that doesn’t matter at this point. In any case, behavioural therapy was exactly what I was hoping to hear in going into today’s session, even before I suspected Maddy was suffering from anxiety.

Very briefly, some of Maddy’s signs of anxiety are:

  • A very new fear of going to bed – she will cling to your neck, kick her legs, scream, and shake her head no when we try to put her down to sleep. If we actually put her down when she’s like this, she will scream, and scream, and scream. Her voice has become raw because of all of her screaming.
  • She wakes on average three times a night in complete and utter panic – and she is awake. There is no getting her back to sleep if it’s 4am or later. If she wakes then, she’s up for the day. We are wondering if it’s possible she’s having nightmares, though, of course, this is impossible to know. She actually has a goose egg on her head from one of last night’s wakings – she smashed her head off of the side of her crib in the 30 seconds it took us to get to her room. She continues to flail and smash her body around on the floor of our room for a good half hour or so before she’s calm enough to accept being held.
  • She is refusing to nap, unless we’re driving in the car or she’s sleeping in bed with me (which, is kinda impossible when I’m at work).
  • When we’re out in public, if a stranger looks at her, she bursts into tears and wants to be held by me. Once this happens, she will scream if she’s in her stroller. I now just carry her home and push the stroller with my other arm.
  • She is not interested in eating at all. In particular, she is terrified again to be in her chair. She will ask for food and sit in her chair for 10 seconds before she starts reaching for me and screaming.
  • If I am around, she very rarely will let others hold her.
  • It often takes her an hour or more to warm up to people before she’ll leave my side. Often even after this time, she will cry if they get too close.
  • At daycare, she becomes very attached to a worker. When the worker goes on break, she has a meltdown for about a half hour. The cycle repeats the entire day as she attaches herself to various women.
  • Every Monday it takes half a day for her to warm up to her daycare workers – her worker indicated this as not typical for the length of time she’s been there.

You  might be thinking that Maddy is 15 months and that is around the age separation anxiety peaks – and you’re right. You’d also be right to think that often toddler anxiety seems extreme. Anxiety in toddlers becomes a concern when it significantly impacts their life – disrupting sleep patterns, affecting interactions with family and friends, or impacting daily life in the home. In Maddy’s case, we suspect that the anxiety is impacting her eating, sleeping, play, and interactions with others.

Behaviour issues arise from this anxiety as she tries to control what she can – particularly since she has little control over her sensory challenges. Not giving her the control she wants (or needs in order to feel safe), like taking away food she shouldn’t eat, for example, triggers major meltdowns. Eric and I contribute to this in many ways too. We give in to a lot of things we probably shouldn’t, because with lack of sleep comes lack of energy, and we just don’t have the energy to deal with all of the behaviour issues. This is where behavioural therapy should help us.

Why does Maddy have anxiety? I wish I could tell you. It might just be part of her temperament, but more likely, a history of GI and sensory issues has contributed to this. Another piece of the complex tapestry.

I had a hard day today post-therapy. On the one hand, I’m so happy that we’re seeing a behavioural therapist to help us all adjust better. It really is exactly what I wanted to hear. On the other hand, I feel horrible, awful, weepy, and guilty. Despite being able to intellectually understand that I did not create Maddy’s anxiety, I still feel guilty. Deep down there is still a part of me that feels as though I’ve let Maddy down – that I’ve failed at helping her navigate through the first 15 months of her life. Never in a million years did I think that my 15 month old child would experience enough anxiety that we would need to see a behavioural therapist to sort it out. I can’t even imagine what it must be like to live inside Maddy’s body for a day – and to not have any understanding of why. I mean, I barely can wrap my head around why, despite the hours I’ve spent reading about her issues and talking to therapists.

At the end of the day today I went to pick Maddy up at daycare, and for the first time they talked to me about the struggles they’re having with her – eating, sleeping, being clingy/not playing. Huh. Everything we’re struggling with at home. Her primary worker told me that listening to her cry in her crib just broke her heart. I knew exactly what she was talking about: the urgent shrieking that lets you know there is no chance Maddy will calm down. It also lets you know that you will no longer be able to help her calm down. They also expressed concern over the lack of sleep Maddy is getting – on average a total of 7 hours the last few days (including naps). She’s 15 months and she has bags under her eyes. She is obviously exhausted, and yet cannot sleep. We brainstormed together, but ultimately, none of us can force her to sleep. I absolutely adore these women, and they take so much care with Maddy. Their compassion was written all over their faces.

After leaving daycare, we went to the post office to pick up a package. While waiting in line, an elderly man leaned over to say hi to Maddy. She promptly scrunched up her nose and smacked him right in the face. It was the cherry on top of my oh-so-crummy day. I sheepishly apologized and got out of there as quickly as I could manage.

Like always, I am feeling everything at once: hope, fear, and sadness. But, mostly I’m feeling anxious over my baby’s anxiety. How’s that for full circle?

The day ended on a high note with my first pole dancing lessons (so much fun!), and a surprise candle lit dinner (gotta love my oh-so-sweet hubby). Another day done – keeping my chin up and forging into tomorrow.

All things autumn

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We had a week of coolish weather this past month, and it got me thinking all things autumn. Sweaters covered in vests. Brisk hikes. Soup. Coloured leaves. Hot chocolate. Sunsets. Reading by the fire. Knitting.

I decided to pull out my knitting needles, a rare sight for me most summers. I started working on something fun for Miss Maddykins.

Can you guess what it is?

Not so neutral

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This morning, after an almost 13 hour sleep I woke up completely exhausted at 6:15. I dragged myself out of bed not quite ready to face the day. I took the time to blow dry my hair with the hopes that that would somehow make me more ready for the day.

I sat in my car at 7:15 while Eric strapped Madeleine into her seat. I turned the car on. I looked down at the emergency brake, and seeing it was on, lifted my feet off of the brake and clutch. The car jerked forward and I heard Eric yell. Maddy immediately started screaming. I turned around and couldn’t see Eric, but knew I had hurt him. I jumped out of the car and ran around to find him lying on the ground grasping at his knee and foot. I burst into tears. Had I really just run over Eric’s foot? Indeed. His sandal was still stuck under the tire.

For you non-standard drivers… the car was still in first gear, I hadn’t put it in neutral. Not just had I not put it in neutral, the thought hadn’t even crossed my mind.

I’m sure this incident is an example of how worn out my mind and body is. After two weeks of heading to work without enough sleep and coming home to a post-daycare puddle of a mess who fights against me with every ounce of her being, my body is telling me it’s giving up. The thing is, if I strike, there’s not really a suitable candidate to take my place. The only other adult in the house was run over today, and I’m pretty sure his body is going to strike soon too.

Tonight I will sleep. Tomorrow is a new day. But, if you see me out in my car, I’d keep a safe distance 😉

Meltdown: The life jacket edition

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I’ve been away from blogging for a while – soaking up the last it of summer. As usual, things have been up and down in our house. Poor little Maddy is catching absolutely every bug known to man. In the last three weeks she’s had pink eye, sixth disease, a double ear infection, and hand, foot, and mouth disease. The poor thing has only had a few stretches of five days or so where she was healthy since she started daycare in June. We’re hopeful that her immune system is going to start fighting some of the daycare bugs soon.

We topped off a busy summer with a lovely weekend at a cottage in Parry Sound (thanks Kris & Steve!).

Sunrise with baby

The silver lining of having a baby who more often than not wakes up before 5 am for the day, even though she’s tired and grumpy and not ready to wake up – you get to see a beautiful sunrise over a lake.

Nothing makes waking up at 4am more bearable than enjoying some cider on the dock.

Considering Maddy was sick, we had a great time. Her peak fussiness didn’t really hit until the day we left (and continued for a day at home). Gotta say, the kid’s got good timing 😉

We did have two meltdowns while at the cottage – both life jacket induced. We were nervous heading into the weekend knowing we’d have to put a life jacket on Maddy. I mean, a life jacket is not exactly the most comforting thing for any child, and when you put tactile sensitivity on top of that, we were prepared for the worst. Imagine having sandpaper rubbing against your neck and face non-stop and being unable to move it away. That’s what wearing a life jacket might feel like to a tactile sensitive kiddo. We decided to test out the life jacket inside the cottage, hoping that maybe we could warm Maddy up to the idea. Let’s just say Maddy was not really interested in warming up to the life jacket.

After this first attempt, Maddy was thrown off of her game for about 15 minutes after the life jacket was taken off. She needed a lot of cuddles and reassurance before she regained some of her independence. Unfortunately, we had a boat ride planned for later that day and knew we would have to try it again.

We decided to wait until the boat started moving before we put it on, with the slim hope that the movement would be a good enough distraction for her. Not so much. Maddy screamed and writhed with the jacket on for about five minutes. It got to the point that Eric and I were worried she’d hurt herself. Against our better judgment, we took the life jacket off of her. She was so worked up it took about 45 minutes before she stopped screaming and writhing in our arms. After that, it was at least another half hour before she would let us put her down.

Sometimes I think it’s one of life’s cruel jokes that kiddos who find sensory input more stressful also lack the self soothing skills that babies typically develop between three and six months of age. It’s really one of the reasons that I lack so much patience with Maddy when she gets going… because she is always going over the seemingly littlest things, and her fits can throw her off for half a day or more. Overall, I know my patience is pretty good. I am able to put up with a lot. But, there are some days that I wake up with no patience because it’s been sucked up the days before.

Often when people comment that it’s typical for toddlers to assert themselves in the only way they know how, through a tantrum, I agree, because it’s true. The difference between Maddy and a typically developing child is that a typically developing child has the skills to calm themselves. Maddy does not. Maddy needs us to pick her up and give deep pressure through bear hugs, or provide other calming sensory input. On top of that, techniques that often work with typically developing kiddos, like distraction, don’t work with Maddy once she’s worked up. Maddy is no longer fussing over the item we took away from her, she’s fussing simply because she can’t calm herself down – she’s having a meltdown. As she enters the terrible twos this will only continue to get worse – trying to identify a tantrum from a meltdown – and having to put up with both.

I have already started to sense the judgment of others in public when these incidents go down. It reads all over people’s faces that we’re giving in to a tantrum, and that her behaviour is a result of our parenting. What these strangers don’t understand is that left to her own devices Maddy will not calm down – she will escalate. More than once I’ve had to hold back tears and bite my lip as I watch Madeleine bang her head off of the floor or wall out of anger. Both Eric and I have to hold Maddy while she throws sippy cups full of milk square at our faces, pinches us, digs her fingers in our eyes, and scratches us. I already have bruises on my body from our sweet little girls meltdowns. I know that as Maddy gets older, this judgment will only continue to get worse. I am still learning to ignore the looks and well-meant but rather rude suggestions for how to better handle her.

We had been on an up curve for a while after starting therapy with Madeleine. We plateaued after a few months. The last couple of weeks have been wild in our house, a sign that Maddy is entering a new developmental phase – the toddler phase. The techniques we used to use no longer cut it. We need to learn how to better handle the toddler years, SPD styles.

We said goodbye to summer this past long weekend, enjoying  good company, good weather, and good food. We enter the fall ready to tackle the new challenges life will bring.