Guilbault Girls

02/07/2025

The Luckiest Light had its grand opening Monday in Havre de Grace, a non-profit dedicated to empowering individuals with disabilities through art, community connection and other initiatives. …

28/06/2025

Family as staff is not a loophole — it’s the backbone of sustainable, person-centered care.
✅ Family are often the most qualified caregivers.
No paid professional can fully replace the intimate knowledge, experience, and trust that family members bring.
Family know the individual’s medical history, communication style, triggers, preferences, and needs better than anyone else.
✅ Family provide far more than paid services.
Many families not only care for their loved ones but also feed them, house them, and cover countless daily living costs out of their own pockets.
Limiting their ability to be paid for formal support work is unfair when they already shoulder significant financial and emotional burdens.
✅ It protects the individual’s right to choose.
Self-direction means the person decides who provides their care. Limiting family as staff directly violates this fundamental right to choice and control.
For many people, trust and safety depend on being supported by someone they already know and love.
✅ It ensures stability and sustainability.
Direct support work is hard to staff. Turnover rates are high. Family members often step up when agencies cannot fill positions.
Family support helps individuals avoid crises, costly institutional placements, or service gaps that harm health and independence.
✅ It is consistent with state and federal law.
Maryland’s Self-Direction Act of 2022 specifically protects the right to hire family as staff.
The ADA and Olmstead decision support people living in the community with the supports they choose.
✅ It saves the State money.
Family as staff is often less expensive than agency staff or institutional care.
Many family members provide care far beyond what they’re paid, reducing overall service costs.
✅ Restrictions harm the participant.
Proposals to limit family as staff increase participant anxiety and threaten their ability to stay safely in their homes.
Forcing individuals to rely only on outside workers ignores real-world staffing shortages and disrupts continuity of care.
✅ Targeting family is discriminatory and unfair.
Families should not be punished for stepping up to provide care that the State struggles to deliver.
Such restrictions disproportionately harm people with significant disabilities who rely on trusted, consistent supports.

13/06/2025

Every day, PANS/PANDAS caregivers carry an emotional load most will never see.
They are exhausted, invisible — and unstoppable.

🧡 Know a caregiver? Send this to them.
📣 Part of this journey? Share your voice in the comments.
🌍 Want to help? Get involved at lookfoundation.org

01/06/2025

12/05/2025

Strep, pneumonia, mono, COVID, Lyme Disease and co-infections, influenza, sinusitis and more can trigger mental health and behavioral symptoms. This is PANS/PANDAS. When diagnosed and treated properly, children and young adults HEAL and symptoms RESOLVE. Mental health symptoms? LOOK for root causes. An estimated 1 in 200 children and young adults have PANS/PANDAS, which is a BIG number. Early diagnosis and treatment are key. Learn, share, spread the word! Together, we can change the course of mental health by ensuring that no child with PANS/PANDAS is missed.

01/05/2025

Infections and inflammation can cause more than just physical symptoms—they can trigger changes in behavior, mood, and mental health. Strep, flu, pneumonia, COVID, mono, Lyme, mold exposure, and more, can lead to infection-triggered brain inflammation, known as PANS/PANDAS. When these children are properly diagnosed and treated, they can and do heal. 💡 Don’t just treat the symptoms—look for root causes. Have you or someone you know experienced these symptoms?

29/04/2025

Families battling PANS/PANDAS face more than just a medical diagnosis—they face an uphill battle for care, support, and understanding.
🚫 No Insurance Coverage – Life-changing treatments like IVIG and antibiotics are often denied.
🩺 Lack of Knowledge – Many doctors are unfamiliar with the disease, leading to misdiagnosis and delayed treatment.
💡 Mental Health Stigma – Symptoms like OCD, anxiety, and rage episodes are misunderstood, leaving kids and families feeling isolated.
🏫 School Struggles – Cognitive impairments, sensory issues, and anxiety make learning a daily challenge.
🚗 Limited Access to Specialists – Families travel long distances or endure long waitlists to see a knowledgeable doctor.
😞 Emotional & Financial Strain – The cost of treatment, combined with judgment and lack of support, takes a toll on entire families.
Early diagnosis and treatment are crucial, yet so many children suffer for years without answers. It’s time for change. 🧡
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27/04/2025

The quiet grief that no one sees.

There’s a kind of grief that doesn’t have a beginning or an end.

It came without warning.
It lingers in the spaces between appointments and diagnoses, between good days and very hard ones.
It lives in the pauses.
The breath you hold when you sense a meltdown coming.
The silence after a test result that told you nothing new, only confirmed what your heart already knew.

The moment you realize you're grieving a life that never got the chance to be lived.

No one throws flowers for that kind of grief. No one brings meals or writes cards. But it’s real. And it’s heavy.

This is the grief of watching your child struggle to do the things others take for granted. Of smiling through another milestone celebration for someone else’s child, while your heart aches quietly in the background. And in the stillness that follows, you carry the ache of all the things unsaid - the invitations that never came, the silence where there should’ve been cheers, the quiet, knowing that your child is being missed in ways no one even sees. And of being proud of your child and heartbroken for them, all at once.

It’s complicated. It's layered. And it’s something only those who live it every day understand.

So if you’re carrying that invisible ache right now, I want to say this:

You’re not alone in it. You’re not weak for feeling it. You are allowed to grieve what was, even as you fiercely love what is.

I see you, Mama. And I’m holding that space with you.

Love, Christine x
Special Soul Mama

©️ Please share directly. Thank you for honouring the heart behind these words.