Updated: Jan 25
I can remember how appreciative I was when someone gave me much needed advice while raising Robert. Good advice from a parent that had been through similar experiences was so helpful and validating when we were struggling to navigate #lifeUnexpected.
I recently was asked to weigh in on Newsweek magazine’s Parenting and Family’s response to a Reddit post shared by a mom who hosted Christmas at her house and was berated by her parents and siblings for having a tent full of toys and books in the living room that her nieces and nephews weren’t allowed to use. The mother explains to them that the toys and tent belong to Emily, their foster child, who has special needs and uses the space as a safe haven when feeling "overwhelmed."
I can empathize with this mom and am overjoyed that Newsweek shared MY response in their article, Praise as Mom Bans Nieces and Nephews From Playing With Foster Child's Toys, by Jack Beresford.
This exciting development spurred a new idea for the new year! We are launching an “Ask Juli” series on the blog!
It would mean a lot to me to hear about what challenges and struggles you are facing. There may not be a perfect answer, but if my thoughts can help you think through a tough time, it would be an honor for me to offer any support.
Email me your questions and I will be happy to help you and share my experience!
Without further ado, let’s kick off my first “Ask Juli” response! You can reference the original parent’s question on Reddit here.
Wow! Absolutely not! Clearly, you are a devoted mother. I was really taken aback by your words. Please let me share my thoughts.
I am a blogger, writer and voice coach in the arts and disability community. I take great joy in being a wife and mother to five adult children, one of whom only traveled this life for eighteen years due to a very rare mitochondrial seizure disorder. Robert’s profound medical complexities required total care for most of his life. As a result of caring for him in our home and my years of advocacy, I may have a few words of wisdom in this area. That’s me, Juli.
When I read your story, I was shocked that your family did not understand your provisions and safeguards for Emily and support you fully. I applaud all your efforts prior to your extended family’s arrival to care for her so deliberately and beautifully! In the end, your ideas should have also made it easy for family members to recognize the boundaries Emily needed. In my experience with our son and others I have had the privilege to serve or teach, children (and often adults) with disabilities need a place to retreat when their world gets too complicated. They often need a specific place just for them to quiet themselves when sights and sounds around them are just too stimulating. They deserve that dignity. The space doesn’t need to be elaborate, but clearly you put real thought into the tent and the toys Emily felt she would need. Amazing ideas! I love that you, as a nuclear family, supported Emily in this way. It was her space — Emily’s safe and quiet space. It was what she needed ... regardless of the others who found it off-putting!
Now ... I am going to say some things that you may find to be harsh, but I say them with much grace, only in defense of your loving care for your daughter.
1. For your siblings to not understand your very caring actions is not unusual. You are
not unique in that way. Most families caring for a loved one with disabilities are
constantly misunderstood simply because others have not walked in their shoes.
2. Educating others around you about inclusion and “quiet places” needed for Emily
will be a long, sometimes exhausting journey. However, you have been given the
privilege of sharing in her world, and that world requires you to have a strong backbone
and the willingness to give her what she needs, in spite of inconveniencing even the
closest family members and friends. The children who see you advocate for what Emily
needs will, hopefully, become less self-absorbed adults because of your inclusion
practices, but they will have to be educated about their cousin’s needs, too. Be the
teacher! (Read “Like Me” by Laura Wifler to them!)
3. Lastly (and this is the crux of the issue in my opinion), it is never the responsibility
of the person with disabilities to create accommodations or inclusion so others feel
comfortable. It is up to those of us caring for and loving them to provide that. Emily
needed everyone around her to understand that she could play with them if she was
able, but if not, she had created a safe place for herself to feel included in the room, but
away for a bit. It was her space. She has the disability. She is the one who should have
been supported and not made to feel she was teasing anyone else. Seriously? Do they
know how entitled that makes them sound? (Okay, I won’t go there.)
For all your heart-led efforts, I say, “Well done and thank you.” You not only are educating your family, but many families around you. Children with disabilities sometimes run to a corner, or turn off their hearing aids, or hide somewhere to find peace when others don’t understand why. We owe it to them to finally see them and make space, if not also explanation, for their needs. They are well overdue for that respect. Brace yourself for the journey, friend. It’s a long road.
Got a question for Ask Juli? Please send an email to: Juli@inourarms.blog to ask any questions you may like advice on.