Special Needs Parenting

There are many things that you can do to help and support the disabled community and promote inclusivity. As a SEN parent, here's a few of my favourites:

1. Ask questions, never assume
If you don't know if my son can join in with that game of football, or access that building or find that situation too overwhelming....then ask.
Just ask and we'll find the best approach together. Assuming he can't is ableist and prevents all of us from getting into the habit of making adaptions to include everyone.

2. Remember YOUR discomfort is momentary
If you find my son's behaviour, noises and physical movements difficult/frustrating/annoying, then remind yourself that that feeling is temporary. You are able to regulate your situation and emotions far more easily than my son. So remove yourself, have a word with yourself and remind yourself that those feelings were temporary. My son lives with that level of discomfort and difficulty all the time.

3. Practise empathy
Every time you navigate yourself with ease from A to B, or approach a new situation/place/ person without any prior planning or anxiety, enjoy the feeling, appreciate your able body and mind and then take a moment for all of those that can't.

4. Change your perspective
Comfort and ease comes before image. This could mean the clothing he wears, how he moves, his stimming or other self-regulating behaviour. I don't care if my son is in a bedtime onesie laying on the tarmac to keep himself calm and if I don't care, then neither should you.

5. Speak up
Change only happens if people want it to. If you see things that aren't inclusive, whether that be a lack of ramps or accessible toilets or an environment that doesn't cater for all then speak up. Ask questions, write to management, enquire on their accessibility policies. The more we ask the more we draw attention to things that can and should change.

6. Research and open up your world
Open up the echo chamber of your social media and entertainment to include people different from yourselves. Desensitise disability so that you are able to engage with the SEN community without fear or embarrassment. Education leads to awareness and acceptance.

7. And above all else, be kind!
That includes to yourself. If you get it wrong and feel embarrassed, be kind to yourself and then try again.

#SpecialNeedsParenting
#specialneedsfamily
#Inclusion
#disabilityawareness

My kid struggles miserably each week with the transition from dad's house to mom's house and back again. Both of us want her in our lives and we go to great lengths to make sure we can all agree to a schedule for her to be in both homes some portion of each week.

But, we have opposite sleep schedules!

He (they - husband/wife/2 kids under 3 years old) start their dinner at 4 pm, start bedtime routines at 6 pm, and are all completely in bed at 7:30.
My husband and I send my daughter to bed around 8:30. She has to brush and change into pjs and be lights out by 9 at the latest. We've recently agreed to make that earlier. Up to bed at 8 pm, lights out at 8:30 at both homes (in theory).

But tonight (her first day back), she called for us nearly constantly until 3 am, at which point, I refused and told her she had to sleep and so do we.

My husband has to work tomorrow. I have a long drive to get us where she and I are headed in the morning (we live in the country). She has school starting in a few weeks! She can't keep sleeping like this.

I have read every pediatrician's, association of sleep medicine's, sleep consultant's, and divorce/separation's website that I can find. We are trying to do what is suggested there, but it's getting worse not better.

She takes melatonin nearly every night. She gets exercise and a mostly reasonable diet. What am I supposed to do? How do I help her sleep???

It isn't her fault that her parents are opposites. What do I do? She can't keep waking up or being unable to fall asleep every night until 3 am...or not at all!

What do I do?!

#Depression #Parenting #SpecialNeedsParenting #Anxiety #GeneralParenting

It’s 6. I responded to 50+ alarms last night. I was teetering on the edge of the bed I share with my child- trying to sleep between blaring lights and loud beeps. A normal night before a normal day. A friend recently complained about “work life balance.” Annoyed with being called at night occasionally-with how disruptive that was, how little praise was given. In my sleep-deprived state, I googled to see what the fuss was about. Forbes had some tips and I read them as a person whose “work” is indistinguishable from their “life.” “Let go of perfectionism.” No one is perfect, but some of us don’t have the option of lowering our standards. There’s never been a day when I thought I did enough- so I guess I’m doing this backwards. As a mom, I try everyday to be better. “Unplug.” Enjoying the moment is something everyone should do, especially parents who understand the fleeting nature of time. But, we track meds, and symptoms around the clock. “Exercise and Meditate.” Does crying in the shower count? (With the door open of course, because you are *still* “oncall.”) Workouts come in the form of running late to an appointment and getting to do all the loading and unloading at warp speed. “Limit time wasting activities and people.” When you’re a caregiver, often your priorities ARE someone else’s. That’s kind of the point. “Change the structure of your life.” This tip revolved around getting out of a rut, and focusing on the tasks you value most. Ruts are critical in a lot of households- without them, mayhem can take hold. I focus on what HAS to be done and that leaves dishes and an immaculate house sitting on the back burner. Delegating was mentioned, and I nailed this one. I got a roomba on sale. And now I delegate sweeping. “Start small. Build from there.” This is the only tip on the list that really resonated with me. The ONLY way that I can imagine having changes occur, is slowly and in bits and pieces. In some of the groups we celebrate inchstones, instead of milestones. Small, maybe, but mighty progress.
So how DO you find balance when your work and your life are one in the same? I still don’t know. I love my job, as a mother. I love my job as a caregiver, although I would give anything to go back in time and take at least some of the struggle from my child. Not because I want to “work” less, but because I want him to suffer less. While the husbands and friends out there are complaining about THEIR work life balance, I do wish some would look around and see the moms (all the moms, but especially those with medically complex kids, kids with disabilities, neurodivergent kids, etc.) that are not only oncall 24/7 usually in unpaid positions (hey! Check out the waivers in your state for paid parent caregiver options), but also don’t have the option of meditating in the park. For me, I think I’ll throw this imaginary scale out of the window and just keep on keeping on. #SpecialNeedsParenting #MedicallyComplexChild #PeriodicParalysis #SleepApnea #Disability #Rare #Laryngomalacia #Pharyngomalacia #ChronicLungDisease #Dystonia

Some people who love me know some of these, only my husband knows all of them.

I try not to overwhelm everyone about what is an overwhelming part of our lives, but this series on living with hemiplegic migraine is so well crafted and hits so close to our own experience, I thought those who wish to enter into ours at a deeper level may want to read it.

The issue of medication rationing is particularly striking, because no one wants to talk about it, or believe the choices we are forced to make, or that they would make the same should they find themselves in the same situation.

My team, which now includes more than 35 doctors nine years after diagnosis, has agreed to prescribe a 15 count supply of my strongest acute migraine medication. I can take a three count dose every three hours.

It takes a second grade education to realize, I could go through the entire month’s supply during a single attack if I choose to do so.

So, I don’t.

I was also warned not to use the Rx more than two days a week to safeguard against dependence, so I schedule my dosage dates. Each week I decide what days are the most important to live life to the fullest, be they my children’s birthdays, Christmas, or the day my son needs a new AFO. I won’t even discuss the side effects of neurological pharmaceuticals. The roulette played between symptoms or side effects is a dangerous gamble we are as powerless to overcome as gravity.

migraine.com/living-migraine/hemiplegic-experience-support

#Migraine #IntractableMigraine #HemiplegicMigraine #ChronicIllness #ChronicPain #PainMedication #SpecialNeedsMarriages #SpecialNeedsParenting

When raising kids with chronic illnesses/needs parents frequently find themselves in the waiting room - but what happens when their life becomes a waiting room? This is exactly where I found myself not long ago.

“Surviving the Waiting Room” focuses on taking your finger off of the pause button so you can stop waiting for life to give you the space to be you again! Delivered in bite-sized episodes it’s perfect for when you’re actually in a waiting room!

#Podcasts #SpecialNeedsParenting #medicalneedsmom #Parenting #kidswithmedicalconditions #selfcare #Caregiving

Which is better? I can see the pros and cons on both sides. We chose to send our son with Down Syndrome to the same daycare that his big brother went to before him. It is only two blocks away from my office so it seemed to be the most logical choice....that is until it happened. The unthinkable. One evening I texted Ace’s Speech therapist to ask how his session went. It was supposed to be the first time she went in the afternoon instead of her usual morning session so that she could work with him on spoon feeding. She informed me that the teacher told her that he didn’t have any food! That was it...no offer of anything else! I had no note that he was out. No phone call or text that he needed any. There is even a cabinet full of extra baby food in the room, but none of it was offered to my child! Instead he was given a few puffs that I sent as snacks and that was it. I would have never even known if I had not asked the therapist about that day. When I confronted the teacher, absolutely no reason was given. Just an apology and “it won’t happen again”. Everything in me tells me it was because he has DS though. He doesn’t throw tantrums like other babies. He has reflux so he is a little more difficult to feed. Is that why he was left to go hungry and have nothing but bottles for who knows how long? My heart still hurts thinking about it.

But I also saw firsthand that the day he started mainstream daycare, he came home and was attempting to crawl because he saw the other babies do it. No matter how much I worked with him, he never tried until then.

So is one better than the other? Did he just have one bad day? Would the same happen at a daycare for special needs babies? I’m hoping your experiences can shed some light.