Help for Families with Special Needs

An interview with Louise Bruce about respite care.

special needs

A Second Pair of Hands
Early on, Louise Bruce, a "doer," didn't see that having a child with special needs meant having obstacles, and so she kept "bulldozing" ahead, staying active as she always had been. At some point she realized that having "a second pair of hands" would make her life easier. Louise Bruce, then the mother of three beautiful children, two of whom were born with cerebral palsy, limited vision and speech, and the corresponding delays, was trying to figure out just how to make it all come together.

Having this second pair of hands at the end of the day, when Bruce was most exhausted, became especially helpful. She found different kinds of caregivers for different kinds of respite -- college or high school students who could entertain the children while she was home, and an older, experienced nanny who could care for the family while she and her husband went away on vacation.

Assembling a team of caregivers rather than relying on one caregiver, is essential, Bruce believes. That way, when one caregiver is unavailable, others can step in. Respite care became an integral part of her family's routine, enabling them to function better and make the most out of life. "We traveled and camped with wheelchairs," said Bruce, "and we had to have a third person to get from point A to point B. At one time, two of my kids had severe seizure disorders and we needed someone around who understood what was needed. We also needed someone who could tend to whoever needed it, and enable us to pay some attention to our healthy child, as well as to each other."

Bruce attributes the success of her marriage to respite care, which enabled them to have alone time together -- whether for an evening or a week away. She also believes that the respite care helped her kids. "Parents of kids with special needs are in danger of becoming constant caretakers," says Bruce. "Our kids need us to be their parents, and respite care lets this happen."

The Value of Variety
"Our kids need to have a variety of caregivers," Bruce believes. "Having different relationships with therapists, teachers, doctors and aides is so beneficial," she adds. "Each person sees different gifts in our children, and brings them out, in different ways." This "helps our children to realize their fullest potential and also helps them to develop socially."

Often, parents of kids with special needs are so busy meeting the child's needs from moment to moment that they don't have time to step back and realize the toll this is taking on them. While they love their kids and have much joy in them, it can also be draining. Building in some time for oneself, she said, can enable the caregiver to restore vitality and have more to give.

In contrast to parents of healthy kids who find that any difficult stage will end and their child will change, many parents whose children have disabilities will be dealing with the same situation with no end in sight. The child has difficulties that won't be outgrown, from which the parent will need a respite.

The LaChris Connection
Recognizing how critical respite care has been for them, Louise and her husband Mike created The LaChris Connection (named in memory of two of her children, Laura and Chris), which is dedicated to "relieving families of the time-consuming searches for the resources needed by families of children with disabilities." The TLC foundation "lightens the load" by providing easy access to adventures, respite and information about adaptive sports and camps for children, parent getaways, accessible family vacations, specialized child care resources, support groups and more. It offers parents the precious opportunity to find some balance in their lives, and children the opportunity to have variety. For those families who have not yet considered respite care, Bruce suggests the following are ways in which it can help:

  • "I need a second set of hands." The caregiver stays at home along with the parent, rather than replacing him or her, and helps feed and bathe the children, clean up the kitchen, etc.
  • "Come take my kids for a walk." While the caregiver takes the child out, the parent is free to do things like take a shower, have a drink, do laundry, turn on a soap opera.
  • "I need someone at home with my other kids, while I take one to the hospital." Have a caregiver tend to your other child while you are at the hospital or doctor's office with a sick child.
  • "My hubby and I need some time together." Have the caregiver at home with the child while the parent goes out, whether to shop at the grocery store, get a massage, or have dinner with one's spouse. For this to work, the caregiver must know the child's preferences for entertainment and food, including how to prepare food for and feed the child.
  • "Come camping with us." The caregiver takes on some of the parent's custodial tasks while on vacation with the family. These could include: feeding, dressing, and/or meeting other needs of the child with special needs so the parent can meet the healthy child's needs.

Parent's Responsibility to Caregivers
Parents, Bruce says, have a responsibility to educate caregivers so they can better undersatnd their child's special needs.

  • "We need to start with our child's personality -- feisty, devilish, irascible, whatever -- and then move to the limitations." This helps the caregiver understand the need to do the same. Parents, she adds, must convey their level of excitement about their children, rather than just exhaustion. This will affect the attitude the caregiver takes.
  • "We must teach our caregivers to always put the person before the diagnosis," Bruce says. "We refer to 'children with special needs' as opposed to 'special-needs children.' A child is more than her diagnosis."
  • While parents want caregivers to fall in love with their child, as they have done, they must realize that the parent got to know the child gradually, day by day as the child's personality unfolded. They can't expect caregivers to fall in love overnight, Bruce says.
  • "We have to balance seeing our children's greatest potential and fighting for that, against accepting them with their limitations. We must embrace our hope for the best, but try to accept reality. We constantly negotiate that delicate balance and want caregivers to do the same."

Caregiver's Responsibility to the Family
What should families expect from caregivers?

  • The caregiver must respect the child and family, and embrace, rather than pity, them, says Bruce.
  • The goal is to understand, to get to know, the child.
  • A caregiver should appreciate the child's uniqueness and strengths. She should ask, "What does your child enjoy?" (not: "Can your child to this?"). "What are some of your favorite ways that your child communicates with you?" (not: "How can you communicate?"). "What do you wish that people understand about your child?" (not try to define or put the child in a box).
  • "Do you like to treasure hunt?" is a good question for a potential caregiver, says Bruce. It gets to the heart of what it means to work with children with special needs.

Steps a Parent Must Take in Order to Accept Respite Care

  • Stop
  • Connect with resources
  • Educate a caregiver about the child
  • Permit oneself to separate, knowing that the child is safe
  • Plan the time
  • Use the time

Each one, says Bruce, is a huge undertaking for a parent who has never done any of the above. Making good use of respite care may result in some surprises. For Bruce and her husband, taking a week's vacation at times meant spending the first few days arguing -- something they didn't have the opportunity to do while immersed in care of their children. Having the opportunity to argue was for them a luxury. After a few days of it, the tension was released and they were then able to connect in a more loving way.

Emotional Barriers to Respite Care

  • Parents want to be responsible and to fulfill their tasks in life. Finding respite care may seem to them as if they are evading their responsibilities.
  • If they haven't experienced the advantages of respite care, they may not understand how valuable it can be for them.
  • They might not want to admit to themselves or others that they do need help, feeling that would mean they were an inadequate parent.

Post-Respite-Care Feelings

  • Sometimes parents have a hard time stepping back in after having respite care. They see the difficulties that they were previously just living. If this happens, says Bruce, parents need to give themselves permission to be sad about what's hard. Allow oneself a source of comfort, and then go back at it.
  • Sometimes the child will punish the parent for having been away, unavailable. But they will soon get over it, she says.
  • Appreciation of the ability to have some balance in life, to feel that one's own needs are being attended to in addition to those of the child, will enable a parent to give more and the whole family to enjoy a better life.

Ronnie Friedland is an editor at Care.com. Previously she co-edited three books on parenting and interfaith family life.

Like this? Get more. Sign up for the latest articles, news and tips of your choice. All delivered weekly to your inbox.
Enter your email address:
Comments (12)
sandra ford
I adopted a set of twins, the boy is autistic and none verbal,who is no problem, but needs attention, the girl have severe behavior problems . She is bi-polar,, defiant,impulsive with bizarre behavior , she is driving me up the wall. I can not turn my eye on her for not one minute, because she is always into something, she fights her brother for no reason. The brother is very afraid of her I have to keep him in a locked room, to protect him. I am in desperate need of help, no one will not watch her anymore for me never
Posted: April 28, 2014 at 4:51 PM
Sandra S King
I enjoyed your article. I have a problem adult who is developmentally disabled.
He can be so very sweet, but then he goes into a screaming tangent and becomes uncontrollable. I have tried to isolate him, but it doesn't stop his screaming once he is very involved in the screaming with the result of my neighbor calling the police out. Is there a way I can stop his screaming? I'm welcome to any suggestions. Are there resources I can use?
Posted: April 14, 2013 at 9:09 AM
nana
I,am so happy I found this site it must be another one of Gods Blessings cau I felted I was the only person with this fear and frustration of caring for my adopted 11 yr old special needs grandson.hoping to find help an answers to my questions..
Posted: November 26, 2012 at 3:42 PM
Photo of Tammy B.
Tammy B.
I have a special need's son it started when he was 4 yr.old now his 14 yr.old He's turn into a great young man if you looked at him you would think there was not a thing wrong with him, I Love him so much and have spent lot's of time helping him become the little man he is today.He is very slow learner he was Diagnosis was seizure Disorder,Absence seizure's.He started having them every mim of the day,He was rush to Texas Children Hospital Blue Bird Clinic.Were they went thew lot's of test,His spikewent to a 10 on his EEG.Now they were going to grad mal.His limbs face began jurking with rapid movement blue lip's Conscicous,gos into a deep coma his breathing became noisy his eyes would go upwardall the way.After ward's he would not remember anything at all confused,this left my son all most dead they tood me take him home he would not make it thew the night.Next Day he made it I took him back to Hospital more test they told me they have already used all the medication on my son there was know more they could try he was going to die I had to face it I said know I want they said Will try and restart his brain again I said okay so they tryed to restart the brain 4 time's did't work.But I would not take know for a answer so they said he's to little but there is one more thing we could try,But he would be the first one he's age to get it and he could die on the table,I said do it So they went in did surgery that same night they put in a V N S Therapy Patient Essentials for Epilepsy and my son was on 9 different pill's now this day he is on 1 pill and walking ,talking,and doing great only has Seizure's at night in his sleep.But Thank's to God he is going to school and is doing great now.So don't give up on your child if you have a special need child just love him or her.Because that's a gife from god he new you could handle.Thank's Tammy
Posted: November 16, 2012 at 10:31 AM
ac
I have a son that has autism and he is 17 years old, how can i get help for him !!!
Posted: August 11, 2012 at 12:53 AM
Rebecca M.
How do you get respite care when you can't pay for it? WHen every penny is already spent?
Posted: July 15, 2012 at 1:00 AM
Lisa L. stevenson
I have had custody of my stepdaughters boy's for 10 years. The are 15 months apart. I just need a brake, the 14 year old is really having problems.. we are currently trying to get the Phillips Group in home Consular and have taken him for a EEG and he is scheduled for a MRI. When he was in school. I got e-mails and calls all the time. The CTS team recommend you. We have medicaid on boy's. If you can help please let me know.. I don't need much just a break every once in a while. The one 14 year old I could really use the help. He thinks that We make him do to many chores and he act's like a two year old. He sticks trash in his drawers or any where else he can find to put it. he has not respect for his own stuff much less any one else s
stuff.. Please help!!
Posted: June 27, 2012 at 6:21 PM
nurse on call, respite care provider
I am a nurse on call respite care provider. Our service provides families and caregivers that needed break,a helping hand, an avenue of respite in the caring of their loved ones. We listen carefully to the challenges that each client faces and meet those needs on an individual basis. Please feel free to email me for more information.
Posted: June 12, 2012 at 9:45 PM
MICHELE
dO YOU KNOW OF ANY RESPITE INFORMATION FOR THE MENTALLY ILL. sCHIZOAFFECTIVE IS DIAGNOSIS FOR ONE SON AND I HAVE ANOTHER SON WHO IS 23 TRYING TO LIVE ON HIS OWN WHO IS MRDD BUT WITH A LOW IQ. 69-70 RANGE. I HAVE HAD A HARD TIME TRYING TO GET BENEFITS FOR HIM. HE IS LIVING ALONE BUT NOT TURNING OUT VERY WELL. ANY ADVICE FOR HOW TO CARE FOR THEM. THANKS
Posted: May 20, 2012 at 10:16 AM
angeleyes
my son has cerebral palsy a 9 year old boy. now that next week they'll be out of school am so afraid because i don't have anyone to keep him while am at work as a single mom i don't get much help . i have a 1 1/2 little boy and financially is really hard i don't want to lose my job but anyone out there please how can i gel help for medicaid for home care or is respcare works with children??
Posted: May 15, 2012 at 1:15 PM
Rasheedah
I was in search of information for legal guardianship for my son who is 20 when I came across this wonderful information. I was one of the parents who felt getting extra help was shirking my responsibilities. It really isn't and I am ready to seek respite help for my son. He's autistic, epileptic and mute. He's is more than a handful. I am a single parent who help care for my two grand children as well as him. HELP!!! I need HELP!!! :-)
Posted: May 02, 2012 at 6:00 AM
LJ
Whomever wrote this article must of been living in my head for the past 5-7 years. My husband and I have two children with special needs and a third child who is developing typically. The sentiment written above regarding respite care are what we feel but have not had the opportunity to take advantage for different reasons. I am going to contact TLC tomorrow. I'm so glad i came across this article. Thank you for sharing
Posted: April 10, 2012 at 9:48 PM
Leave a Comment
You can post a comment by logging in to your Care.com account or continue as a guest below.
errortext
Email*
Display Name*
Comment*
Success! Your comment is waiting to be approved. It will post soon.
Post another comment
Join today and find care!
  • Search local caregivers
  • Check available reviews
  • Access background check options
Join Free Today!
What would you like to do?
Membership Type*
By clicking Join Now, you agree to our Terms of Use and Privacy Policy.
Put Safety first
Read our Safety Guide for tools and tips to keep you and your family safe.
Visit Sheila's Blog
Get advice for your family from our founder (and chief mom officer), Sheila Lirio Marcelo.
Advertisements