1/
Raising a child w #hEDS #MCAS #POTS requires lots of love, reassurance and planning. Inspired by @The_Weed I will attempt to be half as eloquent and helpful as he was in the thread I just retweeted.
How do these kids get #PTSD?
Their symptoms are ignored, they are told...
Raising a child w #hEDS #MCAS #POTS requires lots of love, reassurance and planning. Inspired by @The_Weed I will attempt to be half as eloquent and helpful as he was in the thread I just retweeted.
How do these kids get #PTSD?
Their symptoms are ignored, they are told...
2/
they need to ignore their symptom, toughen up, work through pain, not act like a baby, stay w/keep up w/ their peers, try harder, etc.
They may have fatigue, pain, discomfort, or an indescribable feeling that something is "wrong" (perhaps a subluxation) $ they need to stop.
they need to ignore their symptom, toughen up, work through pain, not act like a baby, stay w/keep up w/ their peers, try harder, etc.
They may have fatigue, pain, discomfort, or an indescribable feeling that something is "wrong" (perhaps a subluxation) $ they need to stop.
3/
The result of this is crushing isolation. They have nowhere to turn. Language has failed them. Asking for help is a vulnerable act, and at their most vulnerable they have been struck down, made to feel weak bc they can't just "toughen up" and been shown that the only people...
The result of this is crushing isolation. They have nowhere to turn. Language has failed them. Asking for help is a vulnerable act, and at their most vulnerable they have been struck down, made to feel weak bc they can't just "toughen up" and been shown that the only people...
4/
they trusted enough to hope for advice and protection from think that they are just not trying. Their self esteem takes a blow after fatal blow. They begin to lose hope.
What can we do instead?
1. Assume what they are feeling has a real, physiologic basis. If they describe...
they trusted enough to hope for advice and protection from think that they are just not trying. Their self esteem takes a blow after fatal blow. They begin to lose hope.
What can we do instead?
1. Assume what they are feeling has a real, physiologic basis. If they describe...
5/
the sensation of their foot burning, fatigue, eyes being squeezed out of their head, stomach cramping, heart racing, or any type of pain anywhere: BELIEVE THEM. Don't just believe it's real in their head. Believe it's real in their head BECAUSE it's real in their body...
the sensation of their foot burning, fatigue, eyes being squeezed out of their head, stomach cramping, heart racing, or any type of pain anywhere: BELIEVE THEM. Don't just believe it's real in their head. Believe it's real in their head BECAUSE it's real in their body...
6/
I've never been able to run a mile in my life. What did I say at age 11? My ankles feel like they're "crashing." It was not possible for me to suck it up and I wanted nothing more in the whole world than to do just that. These kids aren't lazy. They are tough as nails. So...
I've never been able to run a mile in my life. What did I say at age 11? My ankles feel like they're "crashing." It was not possible for me to suck it up and I wanted nothing more in the whole world than to do just that. These kids aren't lazy. They are tough as nails. So...
7/
2. PRAISE THEM!
Acknowledge how brave and resilient they are. That doesn't mean they never try anything and sit home all day. It means you work to find accommodations and professionals to help them achieve THEIR potential. PT/OT/LCSWs/School psychologists and Nurses/etc...
2. PRAISE THEM!
Acknowledge how brave and resilient they are. That doesn't mean they never try anything and sit home all day. It means you work to find accommodations and professionals to help them achieve THEIR potential. PT/OT/LCSWs/School psychologists and Nurses/etc...
8/
Ask for them to have extra time between classes if they're nervous about or have been injured in crowded halls. Ask for extra copies of books to keep their book bag lighter. Ask the PE teacher to choose activities in which they can participate or if that's not possible then...
Ask for them to have extra time between classes if they're nervous about or have been injured in crowded halls. Ask for extra copies of books to keep their book bag lighter. Ask the PE teacher to choose activities in which they can participate or if that's not possible then...
9/
Make a video of their PT exercises for them to do w a friend during PE. ASSUME THEIR IS A WORKAROUND OR SOLUTION FOR EVERY PROBLEM, AND DON'T QUIT TILL YOU FIND IT.
3. Create Happy Memories
Roller Skating bday party not a viable option? Invite all the kids over for...
Make a video of their PT exercises for them to do w a friend during PE. ASSUME THEIR IS A WORKAROUND OR SOLUTION FOR EVERY PROBLEM, AND DON'T QUIT TILL YOU FIND IT.
3. Create Happy Memories
Roller Skating bday party not a viable option? Invite all the kids over for...
10/
Arts and crafts or a Pajama Party movie night w baking activity, etc. TALK TO YOUR KID AND ASK QUESTIONS! What activities do they enjoy? How can you & other children meet them where they are and have a great time?
4. Identify and Cultivate Strengths
These could be hobbies...
Arts and crafts or a Pajama Party movie night w baking activity, etc. TALK TO YOUR KID AND ASK QUESTIONS! What activities do they enjoy? How can you & other children meet them where they are and have a great time?
4. Identify and Cultivate Strengths
These could be hobbies...
11/
or leadership skills or empathy or math or connecting with animals. No one is good at or likes everything and no one hates or is miserable at everything. Shine up their natural talents and explain to them how those skills will serve them well.
Few things feel worse than...
or leadership skills or empathy or math or connecting with animals. No one is good at or likes everything and no one hates or is miserable at everything. Shine up their natural talents and explain to them how those skills will serve them well.
Few things feel worse than...
12/
Disappointing a parent/guardian/team mate. These moments are inevitable even for the most able bodied, but we need to make sure they are balanced with actual, real wins and genuine appreciation for WHO OUR CHILDREN ARE.
Field Day can be rough, but afterwards, we can...
Disappointing a parent/guardian/team mate. These moments are inevitable even for the most able bodied, but we need to make sure they are balanced with actual, real wins and genuine appreciation for WHO OUR CHILDREN ARE.
Field Day can be rough, but afterwards, we can...
13/
Remind our child of his/her/their unique and wonderful strengths, that everyone has challenges and some things that are easy for them are difficult/frustrating for others. We can VALIDATE THEIR FEELINGS and remind them that others experience these feelings at times, too...
Remind our child of his/her/their unique and wonderful strengths, that everyone has challenges and some things that are easy for them are difficult/frustrating for others. We can VALIDATE THEIR FEELINGS and remind them that others experience these feelings at times, too...
14/14
Give them space to grieve the day but offer perspective and find something they will love to do that evening.
5. LEARN ABOUT THEIR CONDITION
Lots of resources from @TheEDSociety @Dysautonomia @TMSociety to help you identify symptoms and find help!!!
Hope this helps 💕
Give them space to grieve the day but offer perspective and find something they will love to do that evening.
5. LEARN ABOUT THEIR CONDITION
Lots of resources from @TheEDSociety @Dysautonomia @TMSociety to help you identify symptoms and find help!!!
Hope this helps 💕
• • •
Missing some Tweet in this thread? You can try to
force a refresh
