Just a Mom!!

Often people will say I dont know how you do it, your an amazing mom.  But I'm not an amazing mom, I'm like any other mom who puts their children first. Today I thought I would post about the struggles raising 2 children, one with special needs. One of the biggest hardships is working. I always joke who would hire me, I need the hours of 9:30-3:00 with Friday's off and I may be in tomorrow but I'll have to see how the morning goes. With two children in different schools, lots of doctor appointments, speech, massage, physio, plus school events, bowling and gymnastics and a husband that works shifts it leaves little time for work. My husband works hard at his job as a team lead in a factory. He takes all the OT he can and works shifts that change every week, we need his wage but most of all his benefits. He's not home a lot, so that I can work part time in my basement salon and take care of kids. My kids have grown up in my salon and all my clients are part of our family. This gives me the time to raise our children.  It's not always easy for either of us. He feels like he's missing out and I'm pulling my hair out cause I haven't left the house in a week or go to all appointments on my own. But we make it work. I say I have 10 years in the salon left and then maybe I'll get a job out of the house. Our son will be 23 and our daughter 18. But realize our son will still have doctors appointments, need rides, and help with everyday life. Even if he lives on his own he will need me and I will need him. And I do really love my job and my clients are amazing. If I have to rebook them because we have an appointment come up they are great about it, I only work a couple days a week and they will wait till I have an opening, they are a great group of people. And so it really does work out for the best and for our family.  I don't know how parents do it working full time and raising a family, I think that's amazing!!  We don't have a big fancy house or cars, we don't go on big holidays and aren't able to buy whatever we want. We DO have everything we need, a cozy little house, food in our bellies, clothes on our backs, and a loving family. So even though it's challenging at times we get through it........ Together. 💕

Open and Honest

Last spring we had a neurologist appointment with our son.  I had never asked about the future for him I try to do the here and now, but as he gets older I know we have to start the future process.  So I asked the doctor the dreaded questions, the answers I got threw me, he will probably never live a independent life, he has a cognitive delay. The tears rolled down my face, deep down I knew this but  hopeful thinking.  All I could think is he won't go to collage, get married, have children, live as a independent man.  I was a mess for days, everyone I talked to said 'oh what do doctors know?'  (That doesn't help by the way, listening helps.)  But the doctors do know and they prepare you for the worst and hope for more.  I got passed it and everyday focus on what's best for him,  but in the back of my head I was thinking maybe the doctors are wrong, lots of people told me he will do more.  As the days go on I see his sister who is 4.5 years younger starting to pass him, in reading, writing, maturity.  I have to say parents need to morn these losses it is truly a loss. I wouldn't change him for the world but it is a loss.

Yesterday I had a meeting with his school, I had to know if they saw him progressing or not, I know that this year is the make or break he's in Gr 7 if he isn't progressing then it is what it is. The reality is  .................................................................................................................................................................They dont see much progress, he is where he may stay.

BUT he reads, writes, understands and communicates. Not at his age level but he does it and isn't that something?  He is in the best school we could have him in and he will finish elementary and head to high school. He will stay in his school till he's 21, he won't be in learning GR 12 math but learning all the life skills he can, to be the best independent man HE can be.

It's hard on mom, dad and even little sister, but he doesn't know any different. You can't lose what you don't have. And so we will get through this bump too and move on.  At least I know where the future is going and where we need to head.  I don't write this for a pity party, this is the open, honest truth of our lives and as much as it sometimes hurts we love him with all our hearts and that will never change!!  He is our Angel Boy!!

Lunch time frittata

With a husband that works shift work, meals are sometimes hard to eat as a family.  I make this frittata when he's on afternoons so we can have a nice lunch together and supper can be easy for the kids and I.

Lunch Time Frittata

In oven safe frying pan, sauté 

1 onion

1/2 green pepper

1 Tbsp olive oil

While that's sautéing in a mixing bowl whisk together

10 eggs

1cup of shredded cheddar cheese

1 cup of cubed ham

1/2 tsp salt

1/4 tsp pepper

Add to frying pan

Cook on stove top for 8 mins on medium then put in a preheated 350 oven for 10 mins or until middle is cooked through.  Cut and serve with garden salad. 

Mobility

When our son walks in unfamiliar places like sidewalks and stores he prefers to use his ID cane it helps him identify bumps and ramps. It has made him more independent and we have seen a big difference in even speed of his walking. It's a big difference on my body as well he would always lean on me to walk with him which was ok until he got so big.I wish that people one would not stare (he can see you) ask us we will tell you why he uses it and two move out of the way when he's coming. He has tripped a few people with it. Lol. He still has trouble with remembering to stop and look both ways or if he does stop by the time he thinks it's ok to go something may be coming. So people who drive be aware when you see a white cane and slow down. He won't be walking anywhere on his own yet but really wants to be able to walk to Nanas and Papas by himself so practice practice practice. Nan might have to stand at one corner and mom the other but someday he'll do it. He has Orientation and Mobility class at school which helps him with these skills.  It's so important to us to have him as independent as possible for him. We also have a wheelchair for him for long trips eg:amusement parks ect but I do use it in malls too. I do all the lugging of bags, coats, purse and the kids, so its easier for all parties for him to be in the chair. That way my hands are free for other things and he's safe sitting, his sister even gets rides on his lap if she's tired out too.  What people dont understand is how it effects the caregivers body when the lugging and leaning is up to them. Even going to doctors appointments are exhausting for the caregiver, mind, body and soul. I wouldn't change anything about our son but we do use mobility devices to help with the day to day tasks that come up. So when you see a person with a cane or any device and you think maybe they dont look like they need it just be aware they wouldn't have it if they didn't need it in some way to make life easier. 💜

Future

Lately I have been wondering why life seems to be going so fast.  It occurred  to me that every season moves into the next and we really never get a break.  They put Christmas stuff out with Halloween, valentine's out right after we are out of Christmas and I saw some Easter out the other day also, we are only in January.  So I see why we are always looking at the next thing instead of just enjoying where we are. When my kids ask what's next lately I've been saying lets just live for  today lets not wish our life away.

These future thoughts have been in my head a lot lately with our son.  What will the future hold for him?  Where will he live? With us, on his own or in assistant living??  Will he have a job? Get married? Have children?  All questions that probably the answer is no, but we can always be hopeful.

The last couple of weeks Ive asked those questions a lot because I have been noticing a change in him, he doesn't seem to be progressing and maybe a little of regressing. Speech has been awful with a lot of stuttering, he seems to be at a slower pace all together and processing thoughts takes a long time.  But he has been off his schedule with Christmas break and snow days so this is really his first week of school. We keep thinking once he's back on schedule maybe things will get better............

And if they dont well that means a call to his neurologist. Which to be honest opens another can of worms.  I have a meeting with the school to see if they are noticing. His respite worker has noticed it too. Is it seizure activity, hormones, low iron or something else??  What ever it is we will deal with it as always. Because no matter what it is we are his family and we will do anything in our power to make him a happy, healthy, and as independent as he can be person.

So instead of thinking about the future, his future I'm going to try to live in the now and help him with that, and as the days go on we will figure out what to do and how to do it.

When your in the store next skip the valentines isle skip the Easter isle and just live in the here and now because if we keep looking for the next we will be back at Christmas wondering where the year went. 💜

Ivan's dip

Super Bowl Sunday is just around the corner, here's a great dip to make. One of my husbands favourites, its so good and easy to make. Things you should already have in our fridge. Enjoy!!

Ivan's dip

1 8oz cream cheese

1 Tbsp. mustard

1 cup sour cream

1 cup mayo

2 Tbsp. worcestershire sauce

Beat all together till smooth and place in bottom of 8x8 pan, cover and chill for at least 30 mins.  

Top with your favourite salsa and serve with nacho chips.  You could also add shredded cheddar cheese on top also, but we like it like this.  

Sister to a special needs brother.

Being a sibling of a special needs brother isn't always easy. I thought today I would tell you about our daughters life through my eyes. Our son didn't walk until 2 weeks before his 3rd birthday. My husband and I had decided that if he didn't walk we wouldn't have any more children, I knew he would take all my time. But he did walk and the following July, Baby Girl was on her way. My pregnancy with her was such a worry, they sent to OB right away and put  me on the high risk list just because of everything that went wrong with our sons delivery. So lots of appointments, tests and ultrasounds on top of His long list of appointments and 5 months in to my pregnancy with her, his seizures started. A scary time for all. In March I was scheduled for a c-section and on March 27, 2008 our sweet perfect Baby Girl was born. My delivery again was not as easy as I thought, I had no/low blood pressure another very scary delivery for my husband. I do remember him crying and telling me she's here and she's big and chubby.(which her brother wasn't he was very small and was whisked away before we saw him). She was the most beautiful baby girl I had ever seen and she was healthy. She wasn't a great baby she cried unless I was holding her and we joke that she cried till she was 3. The funny thing is whenever something went wrong with her brother she was the perfect baby just slept through if we had to call 911, or when my dad and moms friend had to stay with her while we rushed to the hospital. She has stayed a lot with Nana while I take her brother to appointments even though I felt bad for leaving her, her and Nana are so very close. Now that she is older she comes with us and we make a day out of appointments usually with some shopping her favourite thing to do. We did try to have another child but I wasn't able to get past 12 weeks in 4 more pregnancies after our daughter I now realize I truly have the most wonderful children in the 2 I have and are so blessed to have them................So My daughter is my handy helper. She will have her brother shoes tied and coat zipped before I even ask, she makes him breakfast if I'm working down stairs. She is my eyes and ears sometimes. He still needs help with bathroom issues and she will come find me if she hears him calling me. When walking she grabs his hand if mine are busy or directs him to stand where it's safe while they wait for me to pay ect at the store. Things I don't ask her to do she just does. This is funny cause he's 5'6" tall for his age and she is short for her age. Lol. They are truly best friends. We know someday she will pass her brother we see it already. She has friends and goes over to play or they come here but she's always happy to come home and tell him all about it and happy to tell her friends about her brother. It's not easy sometimes for her as our house revolves around him but her and I have girl night once a week and on her padays do something special just her and I. The thing is our daughter doesn't know any different she was born into this life and loves her brother with all her heart she would do anything for him and I think probably always will. She makes me so proud everyday. Last week walking home from school Our son was with us and these three kids were staring at him. I could see it was bothering her when we got home and he was in the other room I asked her why it bothered her she said "just because he's not like them doesn't mean he's not a person" 😢 what an amazing child she is!! She is the worlds best daughter and sister anyone could have and I'm so lucky to be her Momma. 💕💕💕

Epilepsy

Epilepsy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain.............................Just before our son turned 4 his seizures started. I was 5 months pregnant with our daughter. It was the scariest time of our lives. They put him on meds right away that first year was lots of appointments med changes and a new baby. When our baby girl was 3 weeks old we found our son unresponsive on the living room floor he had had a tonic clonic that was his first ride in the ambulance. Three more times after that time we had to call 911 also. Very scary. It took a little while to get meds right but he hasn't had a tonic clonic since 2009. 2 years ago his meds weren't working and even though we didn't see the seizures physically he was having them all the time. So it was time to change meds, except the med change wasnt right and he had a reaction to the new medication so we had to try another. Which has worked great!! This year we had to up the meds at night and I'm wondering if will have to up them more. I can tell when they aren't enough. Our lives revolve around pill time in the morning and night. The whole house rings with alarms. Lol. I have to say I still hate that he has epilepsy and it still scares me. I sleep with a baby monitor so I can hear him and check on him 2 times a night at least. When I'm away whoever has him usually texts me PILL DONE so I can relax and have a good time. Once I said to my mom I can't do this and she said you have to, you have no choice and so I do, we all do. Everyday I'm so thankful to have our son and to have our daughter my trusty side kick. 💕

Chocolate Cupcakes

I make these cupcakes for all occasions. It's just as easy as a box mix, but yummier for sure.  They are so delicious and fudgie. Best recipe I have ever found for Chocolate Cupcakes.

Chocolate Cupcakes

2 cups sugar

2 eggs.

1 cup milk

1/2 cup oil

2 tsp vanilla

1 3/4 cups flour

3/4 cup cocoa

1 1/2 tsp baking powder

1 1/2 baking soda

1 tsp salt

1 cup boiling water

In large mixing bowl add sugar, beat in eggs, milk, oil and vanilla. Set aside. In smaller bowl sift flour, cocoa, baking powder, baking soda and salt.  Once mixed add to wet ingredients and stir until mostly mixed then add boiling water and beat for a minute or until its nice and smooth.

Line 24 muffin tins with cupcake paper and fill 1/2 way with batter

Put in middle rack of a 350 degree oven for 15 mins or until a toothpick comes out clean.

Let cool before icing

Our Favourite Chocolate Icing

3 Tbsp softened butter

3 Tbsp cocoa

1 Tbsp hot water

1 tsp vanilla

1 1/2 cups of icing sugar

Cream butter, add cocoa, water and vanilla, beat in icing sugar a little at a time.  Beat until nice and smooth. Yum. 

Routines Are Key!!

Like most special needs kids, our son thrives on routine. He looks at the calendar every morning for about 5 mins so he knows what's coming up. If something is not on it or gets changed it makes him upset!!  Our calendar is colour coded so he knows green is his "stuff". We also have to cross every day off at bed time. We never promise anything unless we know it will happen. His school is very routined as well every day of the week is the same which he tells me every morning while I put his shoes on whats happening. I know but just listen to him, it helps to start his day off right. He has separation anxiety and social anxiety so routine routine routine makes his life easier. He worries about being sooooo busy some weeks but as long as it's mostly on the calendar he does ok. Somedays I wish he would just go with the flow but his brain doesn't work that way. Crowds and nose bother him as well and many times we have had to get up and leave early because we can see he's had too much. Melt downs seem less as he gets older or we have figured out triggers and leave before one starts. He tries so hard sometimes not to have one I can see in his eyes he's trying to hold back and doesn't want to yell and cry. Usually his melt downs are towards me but I have read it's because him and I are so connected that he uses me to help him. I don't know if his anxiety is due to his meds (which can be a side effect) or it's just the way he is. Meds control the seizures and we try to help with his anxiety. His biggest thing right now is if we leave the house he asks us 6 times if we put the dog in her cage usually all three of us say "yes she is" at the same time. Lol. If that's all we have to do to have a good time while thats easy. As a family we do have a hard time with making friends not everyone understands the effect of one a special needs child and two one with anxiety. He's great with my family, sometimes he has enough and it's time to go and that's ok, and we have a couple of friends that he likes to see, but they do extra things like make him a safe room in their homes where he can go to get away and have chill time. No other kid allowed. But the biggest thing friends can do is just treat him like any other child. Talk to him, play with him and if need be give him space. It's hard some days but I wouldn't change a thing about him. He is who he is and we love him so much just that way. 💕

Crockpot Chicken Stirfry

This is a recipe that I make on a busy week night. I work one evening a week and do this often so that my husband only has to make the rice when he gets home (he isn't a cook). It's totally one of my experiments that turned out great. It's not a true stirfry but works on a busy evening. Easy, healthy and delish!!

Put 2 chicken breast in the crockpot (we get our chicken breasts from butcher so I use one as they are very large) then in a small bowl mix rest of ingredients together....
4 Tbsp of soya sauce
2 Tbsp of orange juice
1 chopped onion
1 clove of minced garlic
1/4 tsp of pepper
1 tsp of ginger
Salt to taste ( i dont add any due to salt in soya sauce try to make it heart healthy)
Pour over chicken and set crockpot on low for 5-6 hrs or high for 4 hrs

About an hour before serving shred chicken and add in a bag of frozen stirfry veggies, turn crockpot on high till veggies are hot and cooked.

Make your favourite rice while veggies are cooking and serve chicken and veggies over rice. If you wanted a thicker sauce you could add in a little corn starch and water to thicken before veggies go in.
Hope you enjoy!!

A day in our life.......

I had someone ask for me to post a day in our life, so here it goes.........
Our days start differently every week because my husband works shifts, he works 7am-3pm, 3pm-11pm or 11pm-7am switching every week. So its up to me to do the day to day stuff

6:20am I get up and get myself going for the day

6:45am our son gets up with his alarm heads to the bathroom, this is when I know if its a good day or not, if he says good morning ok its a good day, if he mumbles about going to school and he's tired well not such a great day.  I put his clothes out for him and he gets dressed without socks, we do that after. I make his breakfast and if he's not done getting dressed I help him finish, we are on a time line.  He eats his breakfast, washes his face and brushes his teeth while I clean up his dishes.

7:30am I give him his meds, put his sock, brace, boots, coat, hat and mitts, give him a big hug and kiss wish him a good day even if he's grumpy and he always say "have a good day too mom" and out the door he goes to catch the bus.  He has a little under an hours bus ride to school.

From the time he gets to school till the time he leaves school he's busy with regular class, gym, swim, music, life skills, orientation and mobility, French, every week is the same, they are very scheduled.

After he gets on the bus I start again, our daughter gets up has breakfast, gets washed up, gets dressed, we do her hair, make lunch all the things you do before school.

8:50 am. I walk her to school

9:10am back home from the school and I start either my house duties, groceries, errands  or I go down to start my work day of hairstyling. I work Tuesday evening, Wednesday and Thursdays while they are at school and Saturday morning.  If Dads on afternoons then my parents pick kids up after school for supper and bath time so I can work straight through the evening, this is up to dad on Tuesdays when he's home.

3:25pm I walk back to the school to get our daughter from school, we come home put all school things away and start supper, either dad is on way home, just getting up or at work.

4:30pm our son gets home, he is usually tired and after washing up lays on his bed till supper, he needs this time by himself to re energize.

5:00pm we eat supper which is usually a 3 course meal, my husband always says I dont have to make a supper like that everyday, what about hotdogs and beans lol NO I didn't eat like that as a child and either are my children. Don't get me wrong we have hotdogs once and awhile but for the most part we have a salad, meat, a potato or rice, veg and if you eat everything a dessert. Some of our recipes I will be posting on the blog.

After supper its clean up time which both kids help with, if you set the table you dont have to clear it, they are in charge of emptying the dishwasher, taking out the recycling and feeding the dog, as well as making their beds every morning and cleaning rooms, most chores get done Saturday mornings while I work.  I think its important for them to have chores, if I dont teach them how to do things, how will they know those things when they are older. Just cause he has a disability doesn't mean he doesn't have the ability to learn and work

6:30pm showers start, he usually does his own shower I still have to help him after use of the toilet but mostly he's independent. She need help with her hair but is fairly independent as well as much as an 8 year old can do.

After we are all cleaned up the kids play together or watch some tv.

7:30 pill time the alarms all go off, its very important for an epileptic to have their meds on time he takes different doses in the morning and at night.

8:00 our daughter reads to me, I read to her and she is in bed at 8:30

8:45 our son reads to me, I read to him and he is in bed at 9:00

I tidy up and head to bed too, and that is a day in our life, that's a good day normal day without appointments or after school activities , bad days are very different but those get farther and farther apart as he gets older.  Probably not much different then anyone else's just a little more to it.