Caring for a baby or toddler with a disability may be one of the most strenuous and stretching experiences for a parent. These mothers offer some of their wisdom gained from experience.
Hilary Ferguson, a former math teacher and mother of four knows all about it. "The hardest part of having a child with special needs is the worry, the broken heart, the mourning for the life you had hoped to live, and the constant caring that a parent gives," she says. "Where a typically developing child will constantly achieve milestones that get them more and more independent, a child with disabilities is not progressing at such a rapid rate to that independence."
Read on to discover wisdom other mothers of children with disabilities have used to turn their trial into a blessing.
Let yourself grieve
Grieving for the loss of the future you thought you were going to share with your child is heart wrenching. For Jodie Palmer, a mother of a daughter who has cerebral palsy, admitting your grief is paramount in overcoming it. "What helps me through the process of grieving is not running from the pain. Not telling myself stories about it to try to justify it, or rationalize it, or make it go away."
Palmer also tries, "to recognize that it's visiting my heart." She says, "I feel the sorrow, and I let it be there even when it hurts so badly. Because, and I promise that this happens, when I don't run away from the pain, it teaches me, it strengthens me, it softens me, and then it moves on. And on the other side, I'm stronger, more joyful, and more compassionate to others. This is one of the great gifts my daughter has brought to my life."
Watch your emotional health
Though Palmer understands one has to give great care and attention to children with disabilities, she is quick to warn that parents need to be watchful of their own emotional well-being during the first few years after the birth of a child with a disability. All of the stress both emotional and economic that surround the birth of a child with special needs can create what Palmer calls, "a set up for the perfect storm."
"I had all of the classic symptoms of what's called Postpartum Mood Disorder," Palmer says. "I was depressed, unusually emotional, filled with extreme anxiety and fear, and had running 'what if' thoughts about my daughter and husband being hurt or dying."
Take care of yourself
The kind of demanding, and some would say consuming, care for children with disabilities can lead to caregiver's fatigue where the parent needs help as much as the child with special needs does. Elizabeth Hill, a writer and mother of four children one of which has cerebral palsy, knows about the tenuous balancing act required of parents of children with disabilities.
When Hill starts feeling overwhelmed, she tries to remember the disability is her daughter's to face first and foremost. "Yes, it stinks," Hill says. "Yes I wouldn't wish cerebral palsy on anyone, but it's here and it's here to stay. So, we manage and I'm training her to manage it"I also exercise, eat well and find things that I enjoy. I can't help her if I'm sick or worried sick. I surround her with people I trust so I don't have to worry when she's at school or at a friend's house."
For Ferguson, the balance between caring for your child with special needs, your other children, your spouse and yourself is more tricky. "I haven't avoided caregiver's fatigue really," she says. "I love my child and I would do anything for him, despite being exhausted. "
Perhaps the greatest source of support for parents of children with disabilities is networking through support groups either online or live. Palmer advises, "I'd like to say that it's OK to take time for just you and your child, and not feel like you have to connect to a network of some sort right away, if that's what feels right to you now.
"However, there came a point when I felt a need to connect to other parents with special needs kids," Palmer continues. "All of the most helpful advice has come from parents. I've learned not to wait for our doctors or therapists to tell me what I need to know about my child. I've had to take a serious advocacy roll and do lots of my own research and connecting with other parents. Recently I've discovered a wealth of support on the Internet. Facebook is a particularly helpful resource to find networks of support."
Although caring for yourself and finding a network for you and your child while you grow together to cope with this new challenge is important, it is also important to forgive yourself for the things you wish you could provide for your child but can't. "Mother guilt" is more potent when you are truly trying your hardest and still feel like you're still not measuring up.
Says Palmer, "A friend of mine recently articulated the same feeling when she expressed fear that when she met her own special needs daughter in heaven, her daughter would be so disappointed about how much her mother didn't do for her. Another woman responded, with tears in her eyes, saying, 'No, no ... your daughter will run to you, and fall into your arms, weeping with gratitude for everything you did for her, because she will have full knowledge then of the true nature of your challenges as a mother.' That thought has been a great comfort to my heart, as I grapple with my desires to be more and do more, and how short I feel I'm falling. My advice for "mother guilt" is to just be gentle, be kind, and be patient with yourself. You're really doing a great thing, the most important thing - loving this child."