9 years ago that I gave birth to a girl who is very beautiful and whose name is Claire. I did all the necessary tests that my doctor recommended me to do and pregnancy and the childbirth were very easy.
So, when I and my husband were leaving the hospital, a neonatal nurse told something to my husband and me, she said that our little girl probably has something that is not normal and she cannot leave the hospital.
Although it took a couple of years, we finally got a diagnosis of a genetic disorder so rare it has never been written about in any medical journal and we have only been able to identify one other person with the same genetic disorder in the entire world.
The birth of Claire, and the host of developmental and medical issues that accompany her
The friends who supported and helped us have already passed the world of special needs, they are always with us to help us and support us. often they did not know how to help us or what to say, but despite that, they are never abandoned. Even almost nine years later some do not know quite how to react to preteen who cannot speak or feed herself, wears diapers, bites and pulls hair, and uses a wheelchair.
If you know a friend with a child with special needs, here is what you need to do to support and help him.
1. Ask specific questions:
I like people who ask questions about my daughter, all parents do. When people wonder how Claire’s brothers and sisters are going, it’s easy to tell how the baby is about to roll over or how my first grader recently started reading the chapter books.
It’s even easy to tell how my 4-year-old is going through a period of fierce independence and asking for advice. But with Claire, there is always a lot going on, good and bad, and most of which without a child with special needs can relate to easily .
Ask specific questions about my daughter’s situation, such as how her physical therapy is going, or if she has learned new signs, I will answer more than just “fine”, since you have specified exactly what you are want to know.
2. Be inclusive:
Even though a disabled child may be limited in what she can do, there are probably still many things she can enjoy. Claire loves playgrounds and movies, not all playgrounds and movies are appropriate for her.
Asking us if we would like to meet at a playground that has adaptive equipment or to see a sensory-friendly showing of the latest kids’ movie sends that message that you want to include our entire family on outings.
While I certainly don’t expect all activities to be planned around my daughter’s needs putting a little extra thought into how she can be included goes a long way.
3. Be respectful of parents’ needs:
Although I enjoy being asked about Claire and any attempt to include her, I sometimes need a break. Other times, I need to let off steam.
It often happens that things do not go well – when she’s not reach another milestone, when it has to face another operation or when I face another battle with the insurances. During these times, I can be absorbed by her care and need a break or a half hour of discussion on a current struggle.
If it seems like I do not want to talk about Claire’s situation, respect me and don’t talk about special needs for that moment and would rather talk about which show I am currently binge watching instead.
Or, if I need to talk for half an hour about how Claire’s insurance has refused coverage for her hearing aid, wheelchair or ABA therapy, just humor me. I will feel so much better when I’m done.
4. Offer to help:
Sometimes life can be difficult, especially when a child with special needs and the stress that comes along with her care is thrown into the mix.
Offering to tag along to a pediatric therapy session with a Mom or Dad still learning how to navigate the world of special needs, putting a parent in touch with another local family with a child with special needs who may know about great resources, watching other children so a parent can spend a little more time at a doctor’s appointment, bringing over dinner for when a child is sick, or even bringing a Mom some coffee and magazines when her child is in the hospital can be enormously helpful.
5. Treat us normally:
Parents of children with special needs often face challenges our friends with typically developing children do not. But, friendship is a two-way street. Just because Claire will never learn how to add doesn’t mean I’m not interested in hearing about your child is a whiz at algebra.
Your child’s problems and achievements are just as important as those of my child, and I do not expect you to support me without being with you when you need someone to share your parental frustrations with or the achievements of your child.
6. You don’t always need to know what to say or do:
The majority of the problems I find with my daughter Claire are unfathomable to nearly every other parent I meet. when I talk about something about Claire’s situation, for example, she will develop seizures or about her needing a CAT scan, it’s enough to listen to me and tell me that you do not know what you have to say.
If you aren’t sure how you can help when I seem like I’m at the end of my rope it’s okay to ask. Sometimes I just need someone to listen and sometimes I need a reminder that it’s okay to ask for help when I need it.
7. You can be curious:
It’s important to me that you ask questions if you have, I like people who interview me about Claire’s situation or our life with her.