Why staying is the right family decision

Why staying is the right family decision

By now you’ve likely heard the news that we are not leaving. And if you haven’t, you can take a peek at the video below!

Phew! It was a relief to be able to share it with our friends, family, and community, and we have been overwhelmed by the kindness of people, even those in Manitoba or with connections there, who have said, “I’m so happy for you guys!”

I’ve written before what it was like being a solo parent when my husband moved to Manitoba for a career opportunity. I found the first few months difficult. Something clicked after Christmas, where I realized I am a lot stronger than I first thought, and it didn’t seem so hard.

But we also hit a point where we knew this couldn’t go on indefinitely. Our house has been on the market since September, and while we have had multiple showings, we hadn’t even received a low-ball offer. It became clear to us our house was not going to sell any time soon, or if we did get an offer, it would be so low that it wouldn’t be worth it to us. The expenses of paying rent in another province and driving back here to visit were adding up.

That was our logistical reason for not moving to Brandon. There are also many personal reasons for not moving, and to understand those reasons, I need to back up and tell a long story that began nearly a year ago.

About 10 months ago, we began seeing a speech language pathologist. We weren’t super concerned that our son wasn’t talking as much as his peers, as I have always felt he learned at his own pace, but we mentioned it to our doc and agreed to just check it out, no harm done.

Word searches are one of the many games Cub enjoys playing.

Shortly after Christmas, Cub began doing word searches. Here he is finding the word ‘equality.’ At the top he found ‘I have a dream.’ This one was a Martin Luther King-themed word search!

 

 

 

The monthly appointments have mostly been a source of stress for me, as there weren’t really any ideas that worked to “make” or encourage Cub speak more, and the SLP was puzzled by why he wouldn’t speak and would choose a more difficult route to communicate what he wants (as an example, find a banana or glass of water in a book and then show it to us). He was also puzzled because he noted Cub made eye contact with him, waved to him, was eager to play games with him, so didn’t think he was on the autism spectrum.

While these appointments didn’t show signs of helping, Cub loved seeing this particular SLP (one time when I mentioned his name, he high-tailed to the door so we could go see him!), so we kept going.

We were sad for us, happy for him, when this SLP got a new job and moved on. We then saw another SLP in his place. By this time, Cub was 3 and he was obviously reading and spelling. He would take foam letters and spell words on his own. Some of his earliest words were snowy owl, bald eagle, scorpion, elk (from his love of going to the zoo), hat, mom, kiss, cub. He kept adding to his repertoire. We weren’t sure, but felt this was pretty cool and remarkable for a 3 year old! When we told the SLP this, she looked me straight in the eye and said, “I’m sure your son is very bright, but he should be speaking more words by now.” I got the impression she didn’t believe me. We granted her permission to refer us to the Alvin Buckwold Child Development Program.

Our file was given to a third SLP, who we began seeing in the fall, after Doug moved to Brandon. She had ideas to try and sent me home with resources: most of these ideas were things we had been always doing. I mean, we’ve read to Cub since he was born. I’ve tried the whole temptation thing to try and get him to say what he wants. Every appointment, she would bring up daycare or preschool and say how much she thought he would benefit from this. This rankled me. On one hand, we have some moms who feel like people shame them for going back to work while putting their children in daycare. Here I felt she was suggesting I wasn’t good enough or stimulating enough for my child, which I knew wasn’t true and that up until recently, he wasn’t ready or interested in something like preschool (which was also something I hadn’t thought of as necessary but I see now how much he loves it and it can only benefit). She assured me I was a good mom, but that just irritated me more: I don’t need to be told that. I know I’m a good mom and that I know my child best (and I hope if you are a mom, you know this, too).

During our last appointment, she told me she strongly believed Cub was on the autism spectrum and asked if we had considered that. I think I responded that most parents of my generation, if they had ever googled anything (which I tend to avoid), have probably considered it, but that we didn’t think so based on our discussions with our previous SLP and from taking a questionnaire sent to us from a friend whose son is autistic. She outlined why she felt he was, which in short was because he is behind in speech compared to his peers but is so far beyond in other areas such as reading and memorizing. Some examples include that Cub has memorized flags to many countries, particularly African, although Asian, South American, etc. (a friend asked him the other day whose flag that was, and he correctly proclaimed, “Bhutan!”); he can point out countries on unlabelled maps – this started out with Egypt, Tunisia, Morocco, Algeria, Congo, Nigeria, Niger, Paraguay, and I think the latest was Equatorial Guinea, Chad (he also knows Canada!); in the same game, he can identify with country the capital belongs to such as Riyadh, Kathmandu; he can place the bones of a human skeleton in the correct places (with some mistakes along the way, but he gets better each time), and then he can place the correct names of the bones [and now if he hurts himself, he tells me he hurt his cranium, patella, or humorus]; and I have seen him more than once sort 12 items into their correct state of solid, liquid, or gas. There is no doubt he can read: part of the reason he knows the flags is he plays a geography game and sometimes I need to help. If I tell him the answer is Khazakstan, he can find the word no problem. (He also knows its flag…and the flag of Uzbekistan…he may even be able to find them on a map…) He can count forwards and backwards; as I write this, he is counting down from 5 to 0 minutes until we go to the Co-op because he loves to grocery shop.

The SLP also gently chastised me for the amount of time Cub spends on an iPad. “You do know the recommended amount of screen time is no more than an hour a day?” I just smiled and said yes. Is using an iPad always ideal? Some would argue not. How do you think Cub knows all of his geography or the states of matter or the abbreviations to American states? It’s mostly from an educational app he plays on it. We didn’t teach him any of the above stuff I listed. He taught himself. I didn’t bother telling her any of this. She later sent me a website that contained tons of articles around kids with autism and there was one about screen time and possibly being linked to delayed speech, so of course I had the moment all parents have at some point: is this somehow my fault?

I left this appointment feeling overwhelmed and frustrated. Is my child on the spectrum? Is she the right person to say so? What difference does it make? Isn’t the point of a diagnosis to get more resources if you have concerns? But what if we don’t have any concerns because we have seen so much improvement and increased speech over the past few months? I had so many questions and wasn’t sure where to go for answers. I turned to friends for support and I messaged my husband, saying something along the lines of, “Doug, no matter what happens with a diagnosis or not, I don’t want to be in a new place. I want to be here with our friends and family and support network.” He later told me he knew how serious I was because I called him by his first name.

He didn’t hesitate. He agreed and began looking for a job back home. He encouraged me to discontinue the speech path appointments because they weren’t helping. We agreed to make an appointment with our family doctor to hear his opinion, express our concerns, see what answers we could get.

We felt huge relief after seeing him, and it was a reminder yet again of why I didn’t want to leave: I did not want to try and find a new doctor when we already had one who meshed so well with all three of us. And let me tell you, it was not that long ago where Cub would cry and cry going to the clinic. One particular appointment was for my check-up, including pap. Cub wouldn’t let me put him down and it took many minutes for him to stop crying, and I mean many: we slowly progressed from the waiting room to the office, from standing and me holding him to sitting and holding him, to him being willing to sit beside me, to him being willing to sit with the nurse, while my doc did the world’s fastest pap ever.

Fast forward to a couple weeks ago when he hurt his arm on a weekend. I told him we could see a nice doctor at RUH because his doctor didn’t work on the weekend. He refused and said our doctor’s name through his tears. We were lucky enough to get in to see him that Monday, and Cub was a completely different kid after seeing him. Like went from needing his arm propped up on a pillow to bending it and putting pressure on it as soon as we were in his office to running around the kitchen island when we got home. It takes time to build that kind of relationship. (By the way, we brought up screen time with him, and the article I had read, and after reassuring me, he joked, “Yeah, Darla, your son has autism because you let him use an iPad.” His off-colour sense of humour is one of the reasons we dig him.)

We now have an appointment at the Alvin Buckwold Child Development Program, and I look forward to hearing what these specialists think and what kind of resources they suggest because it’s clear our son learns in his own unique way. It has taken some time for me to reach this point. I have so many thoughts and emotions bouncing around my head, but I know this will be the place, in conjunction with our family doctor, where I will find the answers and support I crave.

No matter what happens, I want to be near my friends and community. I have leaned heavily on so many of them these past few months, and even once my husband is back, I will continue to do so. I am so grateful for them. I am so grateful for my family, particularly my mom. My mom comes to see us once a week, staying overnight, to spend time with Cub so I can get work done or run errands. When we have a house showing, she is the one who cleans it top to bottom. She does this all willingly (the housework not as much, but she doesn’t view spending time with Cub as work – they are precious moments for both of them). We wouldn’t have this if we moved to Brandon, not nearly as often, and I know it broke her heart to think of it, and I dreaded having to explain it to Cub as well.

Cub now attends preschool, and he loves it. He was all smiles the first day I took him. He walked away from me no problem, and as I sat in the classroom watching, it was clear he was ready: he was right in there following along and playing with the other kids. I left the room to read in the hallway and he didn’t care. His teacher is amazing, and she and the preschool are yet another reason we don’t want to leave. She is a part of the support network. Cub comes home from preschool and rattles off the names of kids he played with. His first day was Valentine’s Day, and that night he went through his valentines from classmates four times.

Has there ever been a happier kid on their first day of preschool?

So happy at his first day of preschool!

Could we find friends and supports in Brandon or any other city? Of course. I know first-hand there are lovely people in Brandon because we’ve connected with some of them already (and even though we are not moving, they have all expressed how happy they are for us that we will be together again). However, we have amazing family, friends, and health and educational supports here already, and it is where we need to be right now.

My husband did end up finding a job, another exciting career opportunity for him, and I have to hand it to him: there have been moments were it has driven me crazy with him being an adult student and then furthering his education when he started working (he would go to Vancouver every few months for a few days at a time). I see now, though, what a great job he has done at setting himself a part from others in his field. His skills are in demand, and he had no problem finding work. And I was touched when he told me what he has been telling people: that his wife supported him through school and as he began his career, and that now it’s his turn to support the family and do what is best for all of us.

Thank you so much to everyone for reading and for all of your support. I know this isn’t the end of the story. There is so much more to come. It will be emotional, but I have no doubt we will get through it because we will be together as a family, and we will have you behind us every step of the way. For that I am forever grateful. Stay tuned!

No matter how hard, he’ll never be this little: Advocating for your child, part 2

No matter how hard, he’ll never be this little: Advocating for your child, part 2

It has been a long road for Adrienne Fedorowich and her little man, Kashton. The nine-month-old has suffered from a severe rash almost since the day he was born.

“It was everywhere. His head was always really bad, his cheeks, his face, his eyelids, his arms, his side body, and his legs were the worst areas,” details Adrienne. She says at first she thought it was eczema. Their doctor recommended Aveeno baby lotion, which she tried, but I didn’t help.

Neither did all the different over-the-counter creams they tried. It got so bad sometimes, Kashton would scratch his head, and there was blood all over his crib.

“I remember picking him up one time, and I wiped the blood off the crib. I remember just crying. ‘I don’t know how to help him.’”

 

Because he was so itchy, Kashton would wake up more than a baby normally would, sometimes 8-10 times a night, and it became an exhausting, painful, and helpless cycle for he and Adrienne.

Adrienne family 04

“I’d be living off 4 hours of broken up sleep, and he’d be exerting so much energy from scratching that I wasn’t able to feed him enough, and then nurses were concerned he wasn’t putting on enough weight. I was concerned because they were concerned, and it caused me stress. He wouldn’t sleep, he wouldn’t nap, he wouldn’t eat, and he’d scratch and itch. I couldn’t help him.”

Read the first part in this series: Adrienne and Tansley’s story

She recalls they had to put mitts on him, swaddle his arms in and wrap him so tight so he’d sleep – otherwise he’d scratch himself raw every single night.

Adrienne and her husband, Josh, took Kashton to an allergist to do a skin prick on his arm, which came back negative. Adrienne was disappointed, as she’d been hoping for answers to solve the itching.

“’Great, he’s not allergic,’ I thought, but I feel like I’m back to square one.”

Health nurses suggested contacting a nutritionist, so Adrienne spoke to one before Christmas, who said it sounded like he has a cow’s milk allergy, telling her the only way to know is if you completely eliminate cow’s milk and all soy products from your diet.

“I got off the phone and I was beyond overwhelmed. I enjoy cow’s milk products, so the thought of eliminating them was, ‘Where do you start?’ And because we already have so many family allergies, many things already can’t have (nut allergy so can’t have almond milk, for example). We thought, let’s just sit on it, wait til the New Year.”

Following the baby led weaning approach, Kashton started some solids in January, and his parents immediately noticed a difference: his rash started to clear up, and he started putting on weight. He put on a pound in 3 weeks. Before that, he was putting on an ounce or less each month. He also started sleeping better.

Adrienne and Josh decided to ask the allergist to do a blood test, specifically for cow’s milk, wheat, soy, nuts, and sure enough, it was a cow’s milk allergy.

“This way I knew it without changing our entire family’s world. Since then, he’s not having any direct cow’s milk (yogurt, cheese) and I’m just more conscious of how much cow’s milk products that I’m eating. I’m not drinking glasses of milk as much,” says Adrienne.

Additionally, Adrienne took Kashton to see a dermatologist.

“She said the exact words that we had been feeling: Babies with extreme eczema, they don’t eat, and they don’t sleep. They are so itchy they literally cannot consume enough calories because of how much energy they are exerting scratching. I sat there, thinking, ‘I’m not crazy. Why hadn’t someone told me this months ago?’

“It was kind of my ‘Thank God I’m not a horrible parent moment.’”

They still put creams on him every once in a while, but they are able to catch any outbreaks and address it quicker.

As soon as his rash went down, he became a different baby. He was happy. He started meeting milestones (he has started crawling and has a tooth now).

“We looked at each other, and said, ‘That’s our baby.’ It’s so nice knowing he’s not in pain.”

Looking back makes Adrienne emotional.

“It was hell. I went back to work when he was three months old,” and people would ask her, ‘How are you doing it?’

“My mom had four babies, and she said, ‘How are you doing this?’ I don’t know, I just did it. You don’t have a choice, what are you going to do? There were a lot of days where we just looked at each other, ‘Is this how this is going to be? Because this sucks.’”

Adrienne felt completely helpless: you have no power to help.

“You see the struggle your child is going through and you have no way to fix it. Nothing is an immediate fix. Everything was temporary, if at all.”

On top of feeling helpless, she was often given the run around trying to get him the help he needed.

“I phoned (my doctor’s office) one time, and asked, ‘Can you just send me a referral to the allergist?’ And they said, ‘No, you need to come in.’

“I thought, ‘You want me, who isn’t sleeping, to pack up my non-sleeping baby, to see the doctor, so you can give me a piece of paper,’” recalls Adrienne. So she did, and Kashton was red head to toe, and the doctor didn’t even look at him.

Eventually Adrienne fired her family doctor, telling him his staff doesn’t takes care of her kids the way she needs them to. At one point, she had to beg him to send a referral to a pediatrician – Kashton never did get one, though Tansley did. During Tansley’s appointment, the pediatrician looked at Kashton, red from his head-to-toe rash, and asked, ‘Am I going to be seeing him, too?’

“How many doctors have I been to for him? There was a point between the two, we had a doctor’s appointment every week and sometimes two. That’s exhausting when he’s not sleeping and you’re not sleeping, and we operate three businesses.”

While Kashton’s health has improved, every day is still a balancing act.

“I’ve had to really think about that work can’t be 8 to 5 like it used to be. I’ve had to learn to be much more adaptable. I might have to work in the evening or weekend in order to get stuff finished. Kashton doesn’t always want to go to dad, unlikely Tansley, or even Grandma. That has been very emotionally hard.”

Adrienne 03

Adrienne recognizes sometimes she just needs a break from always being needed, on top of dealing with health concerns for months.

“I don’t think I ever got depressed, but I got low,” and she says that is always a concern, since depression runs in he family, and she suffered postpartum depression once before when she lost a baby.

“Josh and I have frequent conversations about that for both of us. It’s been as hard on Josh, if not more, because he gets the brunt of it when I’m gone. He gets the screaming kid for 6 hours. When we’d go to the health nurses, they did postpartum depression checks on both of us. They kept asking us, ‘How are you guys doing, how are you managing, what’s your support system looking like?’”

Fortunately, Adrienne says they have support, and as hard as it has been, their situation is improving. And the hard times remind her how important the little moments are.

“I don’t want to wish away any moment. No matter how hard, he will never be this little. No matter what stage he is at, he will never be at this stage again. I can’t get it back.”

Adrienne Fedorowish is a prenatal educator in Warman, Saskatchewan. She and her husband, Josh, teach The Bradley Method and regularly run classes for expectant parents. 

 

If it wasn’t for us, she wouldn’t have help: Advocating for your child, part 1

If it wasn’t for us, she wouldn’t have help: Advocating for your child, part 1

Adrienne Fedorowich knows what it’s like to have to fight for her children’s rights.

While her daughter Tansley (two years and nine months) and son Kashton (nine months), have very different needs, those needs have only been addressed thanks to strong advocating from Adrienne and her husband, Josh.

Adrienne traces her daughter’s speech issues right back to the day she was born.

“She was born on a weekend, so she did not get her hearing test done before she left the hospital. I have kicked myself a lot about that. I don’t know if it would have fixed or changed the outcome, but it could have perhaps gotten us on a track sooner,” says Adrienne.

“I tell parents that should be one of your requirements that you must do before you leave the hospital because you never know.”

Tansley never had ear infections or hearing loss, so her parents never took her to get her ears tested. But because she had a plugged tear duct in her eye that was always weeping and goopy, they visited many specialists, and Tansley has had two surgeries in that eye.

Adrienne has a client (Adrienne runs her own interior design company) who is an ear/nose/throat specialist, so she asked him to look at Tansley. He found she had inconsistent fluid levels in her ears, which caused her not to be able to hear sounds consistently. Before she was two and a half, she had tubes put in her ears. Immediately afterward, Adrienne and Josh began seeking out speech pathology (they called directly to get a referral – every time she went to the doctor, Adrienne had to fight to get her daughter into a specialist). They now take Tansley to both public and private practice, because public can’t see you enough to make the progress they need.

“If it wasn’t for us, she wouldn’t have help. You can’t sit by and let your kids struggle.”

Adrienne family 01

Adrienne holding her son, Kashton, with her husband, Josh, who is holding Tansley. Photos supplied by Adrienne Fedorowich, taken by Finelite Photography and Design.

For Adrienne, it’s personal. She didn’t learn to read until grade 3, went to special ed and had tutors, and the experience wasn’t positive.

“If I can do whatever I can for my child not to have to go through that social anxiety, if nothing else, I will do it. It was horrifying when the teacher knocked on the door and (said), ‘Adrienne, you have to go to the special classroom.’”

When Tansley began seeing the private speech pathologist, she was saying about a dozen words consistently. Now she has between 50 and 60 words, and has started saying two and three word combinations.

It’s made a huge difference, but going to a private speech pathologist has been expensive.

“What are we supposed to do? Just give up? No.”

There are days that it’s really hard, says Adrienne, noting you see other kids her age speaking in full sentences. It’s emotionally draining.

“It breaks my heart that I cannot always understand my own daughter.”

Additionally, it breaks her heart when she explains to people her daughter is delayed because she doesn’t want to make Tansley feel bad. Adrienne points to a recent experience where Tansley needed foot x-rays. The technician walked in and greeted Tansley and asked her, ‘What’s your last name?’

“I was stunned. She doesn’t even know how to say her first name, and what kid would you expect to say “Fedorowich” – how do I explain to someone that she cannot tell you what her last name is without putting my daughter down and that she can’t tell you, ‘I’m scared’ or the anxiety she feels.

“I remember walking out of that room and I said to Josh, ‘We have got to figure out a better way of communicating to the other people a positive way of explaining what she needs.’”

The situation has been a lesson in slowing down for Adrienne and Josh.

“You can’t just race through things and expect her to be there. You’ve gotta explain things, you’ve got to make sure she comes along side you and you’re not leaving her behind, and that she feels as appreciated and as loved as any other child.”

That’s because she is.

“I don’t look at her any differently. She’s the damn cutest kid ever. When she smiles, all of this goes away.”

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Like mother, like daughter: both have smiles that light up a room.

Adrienne Fedorowish is a prenatal educator in Warman, Saskatchewan. She and her husband, Josh, teach The Bradley Method and regularly run classes for expectant parents. 

 

 

 

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