Competition and Comparisons

I participate in a few groups online, specific to disability issues. One is special needs in general and another is specifically for apraxia (Childhood Apraxia of Speech or CAS). We all need people to vent with, or ask for advice, but sometimes I think some parents cause their own stress for nothing.

One was complaining because her two year old refuses to feed himself. He eats, but only as long as she feeds it to him.

Now first of all, I'll admit I have little sympathy for any parent who complains their child is eating food at all. Try living with a kid who eats like, nothing, and get back to me.

So I told her I still feed my almost 5 year old and big whoop, he'll figure out a fork and spoon whenever. Or never. Whatever. Maybe he'll use chop sticks or a paring knife, I don't really care as long as he eats FOOD.

Because guess what? The way my child eats will not change the world. No one will die if he uses his fingers.

Now of course I don't mean, just forget about all milestones and developmental issues and never get therapy. On the contrary, by all means, continue to help support and teach him, but in the meantime, don't lose sleep over silly little things that really don't change your life all that much.

Does feeding a kid take more time? Sure, but last I checked, I wasn't in some sort of arbitrary parenting competition where we have to feed our kids the fastest or die. I became a parent knowing sh*t takes time and I can't keep the same old carefree lifestyle of the past. So yes, meals might feel like they take "forever" and you'll end up with cereal all over the couch. C'est la vie.
Parenting is not a competition!

Then she says she's stressing because it's her non-disabled kid who is slower. So she's comparing the two and it bothers her. Another mistake! Don't compare people. Everyone is different. Problem solved!

So that's my parenting advice of the day - forget the two Cs: Competition and Comparisons. Just let it go and get a good night's sleep... if your kids let you. That's another issue :)

A Typical Day Makes Us Different

I've never raised an NT child, so I can't tell you the differences, but I do know we have some differences, so I thought I would give people an overview of my typical day so you can walk in our shoes a little bit.
Maybe we can compare notes.

Hubby gets up and heads out for work a full hour before we have to be up, so we don't usually talk or even see each other.

I try to get up a bit before the Little Man, but usually am too lazy. Some days, he comes into my bed and we snuggle a bit before getting up for real. Other days, I go to his room and s l o w l y wake him up. If I try to do anything too quickly, it will result in tears and screaming. I plan this time into our morning routine. Being rushed is never a good idea. (Note: we are both really NOT morning people)

Together we go downstairs and I get him his breakfast. He usually gets out his iPad or some trains. iPad days are good days, because it means he is calm and will leave it easily. Train days mean he wants to stay home and I will have a hard time getting him out the door.
Regardless, I give several warnings and repeat the same things every morning, "drink your milk, mama is going to take a shower, then we'll get dressed for school."
On a good day, there is no verbal response to this. On a bad day, he starts making grumpy noises. On a really good day, he tells me he is excited to go to school.

I get out of the shower and start getting him dressed. This also comes with many warnings, "ok, time to get dressed!" in a cheery voice, because he doesn't like changing clothes. Sometimes he fights this process (there's some anxiety I have to calm), but most days this goes smoothly. On the flip side, he can start getting really stimulated and start jumping up and down and flapping, and that makes it really challenging to dress him.
In the winter it's worse, because we have to do snowpants, jacket, boots, scarf, hat, mitts and this adds time to the preparation. Many times the bus has showed up and I'm still on the snowpants stage with him. Luckily, our bus only serves our special needs school and the bus driver totally understands the need to not rush this. I call her on the phone and she waits for us if we're running behind.

Once the bus has taken him, I go in and make myself breakfast and lunch and head straight to work.

At work, I worry that I'll get a call from the school (doesn't every parent? Will he have an accident? Is everything ok?) so I keep my cell with me at all times.

I then use my breaks to make calls - and there are almost always calls to make! Set up appointments, call government services to check on paperwork or applications, talk to social workers, get info for more services...I feel like this part of my parenting job never ends. If it's not calls, it's submitting insurance claims. I think this is something other parents rarely have to think about.

Hubby gets back from work in time for the school bus to drop the Little Man off at home. They make and eat dinner before I get home. By the time I get home in the evening, they are getting ready for bath time. I read and respond to his school communication book, have dinner by myself usually (unless Hubby hasn't eaten yet) and make his lunch for the next day. I run the dishwasher or do laundry while they're in the bath. I check the calendar and see what appointments, phone calls or paperwork is coming up in the next few days.

I then have a bit of time to play with the Little Man before bed. We do the bed time count down - he needs to put away his toys before bed, and this is where we can get a lot of resistance. Actually, there's also resistance to get into the bath, so again, everything comes with warnings and countdowns in order to prevent tears and screaming. On days he is really resistant, we have to take the time to ask and figure out what is causing the resistance (there is always a reason). We have a great technique we learned where you have the child come up with the solution. It's really great because it gives them not only a sense of control, but tools to problem solve independently.

Again, this all takes planning and time, so it's not for the rushed. Basically, we make sure to always allow time to transition tasks and explain the need for each task or transition. The only time I would rush him anywhere is if the house were burning down and I had to get him out. In that case, I would just grab him and run.

We don't rush and we explain every step of the daily schedule, and I believe that is why we have a child who very rarely meltdowns. Sure, he can have a tantrum, but not usually a total meltdown.

Hubby usually does most of the bedtime routine - they read books and I tell him the plan for the next day, example, "tomorrow is Thursday and you have school. I will be here with you, but Dada will be at work. Dada will see you when you get home from school."

After he's in bed, Hubby and I try to get a few spare moments to actually talk to each other, lol! At the moment our big concern is what will do with him over the summer break. His school ends earlier than all the others and camps don't start until the regular schools are finished. Then there's the issue of finding English services that will take a special needs child. This is probably my biggest stress right now. While parents of NTs can pretty much pick any camp or babysitter available, we have to look for more specific services where we know (or hope) he'll have more supervision - and that all comes at a cost also.

And then we go to bed and start all over again!

Rachel At Risk

I went to see a play called Rachel At Risk Tuesday night. Here's the description of the play from their site:

Writer/Director Jesse Heffring worked with over fifty students, listening to their opinions, ideas and perspective on life, to create this eye opening play, "Rachel at Risk." It is a through-the-looking-glass journey into the world of youth, living with disability, in a world that does not understand them.

It was heavier than I expected and it's based on a true story. The play follows the lives of Rachel, who has an intellectual disability, and her Asperger's brother, Michael, who has cancer. They are stuck in the foster system and bounce around from home to home because of Rachel's anger management issues. She is very protective of her brother and the two of them stick together. The foster mother they get is not prepared to deal with a cancer-striken boy and wants to turn away this emergency placement. The reality of the shortage of foster homes available hits home and it demonstrates the incredible pressure social workers are under.

Together, the siblings end up at a special needs school and we get to learn about all the different classmates and their perspective on living with disability. They talk about whether they will earn high school diplomas, if they will work or collect welfare, and what's the point of even trying when society doesn't accept them. They even touched on the difficulties of living with parents who don't accept them as they are.

Rachel gets upset and runs away from the foster home. She ends up in a dangerous drug house and is exposed to a man who tries to use her naivity to turn her into a prostitute.

I don't want to give all the details of the story away, but this is just an example of the very heavy and mature subject matter these teens are dealing with.

Suffice to say, there wasn't a dry eye in the house after this performance. The kids did an amazing job! I'm also really impressed with the school.

As a bit of background, Summit School serves children/teens with intellectual, learning and behavioral disabilities from ages 4-21. They also have "satellite" schools, which means little mini-schools operate inside other mainstream schools. I went to a high school that had a Summit class within it, so these students were partially integrated. I was actually on an integration committee to help create a "buddy" system. I would say for the most part, that failed as a whole, but I know I at least enjoyed spending time with them. I went skiing with them and I remember one boy remarking, "you actually speak to me like I'm normal." Sad, but true.

If anything, seeing this play makes me want to send my son there for high school, because I see how much they really do believe in the kids reaching their full potential.

I'm not sure how long it's playing for, but if you're in Montreal, I recommend checking it out.

We All Need Help

You get up in the morning with to the sound of an alarm clock. The house is warm (or cool depending on how you like it) with the aid of programmed thermostats. Technology is wonderful and so useful. 

You make breakfast, or maybe someone left a smoothie or cup of coffee for you in the kitchen. Your house is clean because you had a maid in on the weekend. You take a shower and get dressed, listening to the news on the radio. Checking your cell phone, you can see the quickest way to work today would be to catch the bus at the corner. Some days, your co-worker sees you waiting at the stop and picks you up. You always appreciate the gesture and chip in a little for gas.

Lunch at work is being delivered by a catering company today, so you didn't make your own lunch. You get home from work and find your partner has a migraine, so you take over the evening routine and let them head to bed early. You know they would do the same for you. You make sure to prep the coffee maker for them for the next morning and make sure the car has enough gas in it for them to get to work. 

Sounds like a typical day, doesn't it? No one exists in a bubble without any help. Technology helps us get up and out the door. Friends, family members and co-workers help us get through our day in many ways. Are some forms of help more socially accepted than others?

We don't judge anyone for not getting a bus driving license and call them lazy or worse because they need to rely on someone else to drive a bus to get them to work. We also don't drive our own trains or fly our own planes (most of us, anyway), and that sort of aid is totally fine! Has anyone ever called you stupid for not being able to fly a plane?

We (typically) don't judge people who need house keepers to keep their house clean. We don't bat an eye when we have to order food from a restaurant instead of cook it ourselves. No one calls people weak or disabled or incapable for eating out. 

Yet, when a disabled person needs assistance for certain tasks, they are seen as weak, incapable, and even have functioning labels put on them (which I hate). If someone needs an aid to come to their house every morning, to get them out of bed, shower and dress them, they are seen as functioning at a lower level than the rest of us.

If a disabled person needs a cleaner to help with chores, they are seen as less than. If a non-disabled person hires a cleaner, they are seen as smart for making time for themselves and maybe even seen as somewhat affluent. Most of all, no one pities or chastises them for needing help. 

We need to think about the amount of help we all receive on a daily basis and we need to think about the judgements we make about others needing help. We all need help in different ways and at different times of our life we may need more. This does not reflect negatively on anyone's intelligence or capabilities. In many ways, help enables us to be more efficient, productive, organized and useful. Without help, we wouldn't get as far.

#WondrousWednesdays

Introducing Wondrous Wednesdays on my blog, where I will hopefully profile or interview people in the special needs community or write about other wondrous things I find.

This first post will introduce you to Melissa Riggio, a young lady with Downs syndrome. She has something she wants everyone to know.


If you'd like to share your story, contact me!

Special Needs Apps

If you have an iPad/iPhone and a special needs child, it can be hard to know which apps to download (or pay big bucks for!) You want to make sure you're getting quality. Well, the Friendship Circle created a site to help everyone out!

The Friendship Circle is a non-profit organization that helps support people with special needs. Developers can submit their apps for review and volunteers check them out (that must be fun!).

It was actually Autisable that turned me on to this site:The Friendship Circle App Review

You can search for apps for particular issues you want to focus on, like communication or life skills. You can also subscribe to their email list where they'll send you a weekly digest of the newest apps.

Some of the apps are even free (yay!).

Off to School Already?

We get a call from the school board this morning, asking if we can bring the Little Man in for his assessment on Monday morning. Oh, thanks for the notice!

Basically the school board has to assess his file and write a referral in order for us to send him to a special private school specifically for autistic kids. So if they decide his needs can be met with a regular school, we can't send him there. Then the school itself will assess him and decide if they'll take him. If they don't, I have no clue what they do at that point. The referral has to be done by March 1st. Again, no one gave us any notice.

Anyway, we managed to schedule another day and Hubby will take him, because it's impossible for me to get time off with such short notice. Actually, it could be done, but I don't want to do things that way.

It's interesting how life goes. Had he been neurotypical, my intention was to keep him out of school until at least 5 since his birthdate makes him the youngest in the class. However, this autism school takes kids at age 4 and really, $5000 a year for daycare, speech therapy, OT and psych is a freakin' steal. I figure work with him til age 6, get him reassessed and we'll take it from there.

And then there's the thought of holy crap, my baby will be going to school in the fall if this works out! How did that happen? Wild.

Special Needs Parents

I once heard there's no such thing as "special needs children," there are actually just "special needs parents." It's a different way of looking at things and a reminder that us parents are special and need to take care of ourselves. We have different needs from other parents because we have different (or more) responsibilities. We worry about things other parents don't have to. So with all that on our plate, we need to take good care of ourselves.

I've shared my tips on how my family does goal setting and I want to share how we take of ourselves in our unique way.

Go It Alone!

I heard this tip from a couple (it was in O magazine) who defined it as a reason for success in their long term marriage: spending time apart.

This might sound counter-intuitive since Hubby and I hardly ever get time alone together, but for us at least, we also need time completely alone. So while it is important to have "date nights" to strengthen the relationship, "absence makes the heart grow stronger" also. For us, it's important to get completely away and rejuvenate. We don't go far - we book a night at a local hotel and check in all alone! We take turns once a month or so, so every two months, I literally get my chance to sneak away.

Important points for success:
-Resist the urge to tell anyone else where you are!
-Your partner or babysitter must agree not to call you unless someone's arm has fallen off or the house is on fire (and even then, there's not much you can do about it, so why bother you now?)
-Resist the urge to call and "check up" on them.
-Plan the day away ahead of time. You cannot just up and leave when you want. Make sure the rest of the household routine and responsibilities are taken care of. Both agree on the date you will be absent and create a care plan around it. Your partner might need to have an extra person around to help them in your absence. Only leave when it is convenient, but don't make up excuses to never do it. Your partner, or you, may find out it wasn't so hard alone taking care of the kids. In my experience, our son is better behaved and calmer when there's only one parent around...usually.
-Use the time to do whatever you want to do or do absolutely NOTHING without guilt! Last time, I arrived and enjoyed the complete silence of the room. I didn't even turn on the TV. I brought a pile of magazines I had piling up (need to cancel some subscriptions!) and just spent hours leisurely leafing through them all. It was wonderful!

Keep a Routine

As much as your children love routine, so should you! That means sleep (especially sleep!), meals, taking daily vitamins, yoga, meditation, reading a book, getting physicals - whatever it is that keeps you healthy - make sure you don't forget about them! Schedule them, set timers if you have to, but do it for yourself, guilt free. Believe me, I know there are some days I'm just trying to get out the door and we've had a tantrum of a time just trying to get dressed. Sometimes I think "maybe I should just skip brushing my teeth or eating breakfast," but NO, don't fall into the trap! Give yourself those 5 minutes to get what you need to get done and you'll feel so much better. We can't all start our days feeling like rock stars every day, I know this. But promise me you'll at least give yourself a chance to brush your hair and feel human. Let's start there.

Talk To People Who Get It

Having a rough day and need to vent? Calling up your best friend with the neurotypical kids might not cut it. Sometimes you just need to talk to someone who gets it. Maybe you met someone at a support group or on an online community. You don't have to be best friends and sometimes it's better that way. You know you can talk to this person and not have to explain everything. Find one or two of those people. Be the same sort of support for them when they need it.
Don't just share negative issues though - call them to share your joy. Every one needs an ally. We can't go through this journey totally alone.

**Some more advice and resources for special needs families.

**A Bill of Rights for Special Needs Parents.

Let Your Child Live Their Own Life

Possibly because we knew going into pregnancy that we had a chance of having a special need's child, I refused to have expectations. After three miscarriages, my only goal was to have a live birth. I'll admit, if given a choice, I really wanted a boy with green eyes (which is what I got, yay!) but I didn't want to have any expectations as to the type of person he would become.

I think also, after our first miscarriage, I realised how quickly we build expectations the minute we discover we're pregnant. Right away you start imagining what he or she may look like, you wonder if it's a boy or a girl, you day-dream about university graduations, weddings, her first period, a first driving lesson...it goes on and on. When all goes well, this can be an enjoyable part of pregnancy. When you have a miscarriage, all those dreams die along with the baby. So I quickly realized, or maybe it was a coping mechanism, that it was best never to get my hopes up and not to have any expectations about the developping child. Just being pregnant, even one day, became my whole focus and where I directed my gratitude.

Even after a healthy pregnancy, I've seen people mourning what they hoped their child would become after they received a special need's diagnosis. But I think saying, "he'll never drive a car or never get married" and being sad about it does two things: it imposes your view of how you think this other person's life should be lived and it sets limitations on your child. Unless you can see the future, why be sad about things he/she *might* not be able to do? Things can often change, they may surprise you. Also, how important are these things you want them to accomplish? Maybe they won't drive a car, but will be an amazing painter. Is that so bad? You could have a perfectly "normal" child who hates driving and never wants to get married.

Are they happy? Are they relatively healthy? Isn't that all that really matters?

I think regardless of your child's health status, you shouldn't put your hopes and fears on them. It's for them to learn, make mistakes and find their way in life.
The fact is, you lived your life. It's time to let your child live theirs.