Parents Wish List for Providers
This page is a compilation of wish lists put together by
Sarah Hales & Laurie McIntosh
Deb and Mark : parents of a 2.5 y.o. ("Slugger") diagnosed with developmental verbal apraxia "What do I think is important in an SLP?
Kathy : mother of a 4 y.o.--diagnosed at 2.5years with "severe phonological delay consistent with a developmental apraxia", "signs of possible ADD/ADHD." Has been in SpTx (speech-language therapy) for 17 mos.
"When we first began therapy, I assumed that going to a speech therapist once a week was all that would be needed.....no questions about her disorder were encouraged, and I didn't think to question my assumptions."
"Parents should know how important home practice is, and how much more quickly the child will progress with their therapist when Mom or Dad is practicing the same (goals) at home."
Penny: mother of a 13 y.o.--adopted at 8.5 years from a Thai orphanage....successfully repaired cleft lip/palate, ESL, mild conductive hearing loss, suspect mild CP. Has been in SpTx for 4+ years
"My biggest complaint about school therapists is that they seem to resent the outside help we go to MUCH time and expense to get for our daughter. Neither one of these women seem interested in gathering information from someone else."
Scott and Lynelle : parents of a 3y.o.--dx'd with mild expressive/receptive language delay, "atypical phonological patterns", and "articulation problems."
"The evaluation was scary for me...the only complaint about the evaluation is that I wish our (SLP) had known about the qualifications for early intervention...it would have saved me a ton of effort and back and forth calls."
"...it seems that 30 minute sessions are not long enough....Forrest is so shy...by the time he's warmed up to her, it's almost time to go."
"(SLP) is great about telling me WHAT she does and WHY she does it. I'm glad for her willingness to work with our family and our needs. I think it's important for parents to be involved. Therapy won't work if it's not encouraged at home." "It's scary to think something might be wrong, and then have to jump through all the hoops to get the evaluation. And then have to jump through all the hoops again to get help. If all therapists understood that and treated the Mom, as well as the child, with some TLC, I think that it would go a long way. We're there because we want the best for our children, we're trying to do right by them."
Gina : mother of 5 y.o.--dx'd with speech apraxia. Has been in SpTx for 2 years.
"I think it would be very very helpful if, when the parent is told of (diagnosis), he/she is handed a "diagnosis(i.e. "apraxia") packet". Maybe this packet would contain:
#1) Instructions for subscribing to (appropriate mailing lists, support groups)
#2) A very good definition of (diagnosis)
#3) Information discussing long-term prospects
#4) Information discussing (approach to therapy)
#5) Other things to look at that go hand-in-hand with apraxia: fine/gross motor, sensory issues, etc.
#6) Resources: good books on speech, language, the brain; toys and children's books; web sites and discussion groups; research articles specifically regarding (the diagnosis) and where to find them
#7) Where to look for funding
#8) What the public schools offer & where to look for advocacy, etc."
Re: home programs "...it would help to motivate me to work with Ally if, to start with, I'd known the importance (of reinforcing therapy goals at home).." Re: therapy plan (goals, objectives, strategies) "Some kind of loose plan that's presented in layman's terms would be nice. I was verbally told that they'd progress from p's, b's, and m's, to whatever to whatever, but it didn't have meaning for me. I would've liked to see that the SLP was going to start with sounds that are produced from the lips, then go to sounds that are produced with the throat--or whatever the sequence is. I 'saw' the plan...that was submitted to the insurance or the IEP, but "lateral-flexor-whatever" means nothing to me. This is kind of a wish list."
Joanne : mother of 2 special needs children--- #1: 7 y.o. with articulation/intelligibility issues, word- retrieval difficulties, congenital heart defects, mix of fine/gross motor delays and deficits. Has been in SpTx since the age of 3. #2: 11 y.o. with ADHD, Tourette's, partial complex seizures, and migraines. Has been receiving school services for 3 years.
"The most frustrating situations we encounter(ed) are: -commitment to services which are not rendered as specified -therapists that do NOT listen to or believe what a parent has to say -lack of integration of therapy plan into the home Suggestions: -accept and UTILIZE the records from (other therapists) -be positive in attitude when dealing with parents regarding what they are doing at home -accept the limitations parents may have in regards to time/energy/work -send home progress reports and suggestions for therapies parents can easily accomplish at home -remember your therapy may be a very small part of the child's medical regimen each day -be supportive of family circumstances -provide additional information or resources a family might utilize
Loree : mother of a 6 y.o.--dx'd with apraxia. Has been in SpTx and OT since 2.5 years of age..
Suggestions: -Have a good, up-to-date vertical file with lots of information for parents -Maintain a lending library of books/videos for those who want more info.
-Plan on spending a portion of each therapy visit with the parent, discussing progress, and making homework suggestions.
-Don't hesitate to make referrals for other family members if the need presents itself. If you note a need, don't think, "but this is not my job...my job is to work with this child." Of course, you have to draw limits.
-Consider offering a support group for parents if you seem to be dealing with the same issues over and over. Find a facilitator, organize childcare, charge a fee, get a grant, talk a non-profit like Easter Seals or The ARC into doing this for you.
-Try to find some way to prepare parents for the grim reality of public education without telling horror story after horror story. The gap between private and school practices are tremendous and has more to do with bureaucracy than with the quality of the individuals doing the therapy.
Lori : mother of 6 y.o.--medullablastoma, posterior fossa syndrome. Has been in Tx since 7/95 after surgery to remove medullablastoma.
Re: the team of therapists that work with her son (and have since his surgery) "...there is a trust with all of them, between all of us, they are professionals but genuinely interested in my son's well-being and progress and want him to reach all of his goals. They all communicate with each other and with us. So, I don't know if this is the norm or not, but I have absolutely no complaints! I'm so thankful for their input and compassion."
Back when I was merely a therapist, I felt that I had to know everything and it was my responsibility to be on top of all new treatments, etc. Now that I'm a parent of two children with disabilities, I realize that therapists have to be willing to admit that they can't know everything and that the parents (who are extremely motivated to find out new stuff) may have new information to share. The therapists need to listen to the parents and be willing to work as a team with them to choose what is best for a child. This is one of many messages that I am trying to get across to the therapists that I get to speak to.
-- Valerie Sand
I would like therapist to look for ways children can help themselves, therapeutically, rather than look to parents all the time to be involved. Chad really likes to watch the assessment video tapes the consultant OT made. Perhaps therapists could make a video tape with the child to send home with them so that the child can rehearse skills being learned on their own at home, like an exercise video.
The big mistake our Infant Development therapist made was that she kept giving us something new to do every week. Yes the child had significant impairments and a lot of work was needed. I remember it as the time I was part of the slave labor force for the State of North Dakota; it seemed like I could never do enough. I became a "mini" therapist, my comfort level was not a consideration. I reached the "end of my rope" when she started asking me to do manipulations with the spine, not like a chiropractor would do, but it involved putting pressure on the spine.
Also she was not timely with information I requested. One of Chad's IPPs wasn't done for more than three months.
She wasn't supportive of adaptive play. One time when I asked about adapting things so Chad could do something, she said something like well I guess he can't do it IN THE NORMAL WAY. At the time it was just one more person telling me my child wasn't normal, it was the last thing I wanted to hear. It also made be feel that she devalued my child because after all he wasn't normal.
Transitioning out of infant development a year early was the best thing I ever did!
From: David G.Parker
Let me just share one bit of information about myself. I am a Social Worker (yea, one of them!) with 25 years experience working with kids and families with many different problems. I always believed that I was caring, compassionate and understanding.
Two years ago, Ellen (my long suffering and ever patient wife) and I adopted a 24 week preemie, who, as it turns out, has CP. We are still not clear on the future.
The change that has come into my life in my profession, stated simply, is to ask myself in ALL situations--"what would I want to happen if this child was mine?" That would mean :"what treatment--what equipment--what therapy--
If the group you speak to can understand (and we know that only being there gives you a real understanding); if they can understand what it is to be a special parent and have a special kid and want the best for that child, and do whatever they can to secure that therapy, treatment, device, etc,. for that child, then they will do fine.
A message for therapists--but maybe they don't do this anymore--Please respect the child's dignity when you throw him on a beachball or do other physical things in a room full of other patients, therapists, parents; let him/her wear clothes! 20-some years ago, all the kids were stripped to underwear for their therapy. I understand this is for better flexibility--but geez. would they do that with adults? with 'normal' children?
And tell the parent occasionally that all the hard work at home is paying off. Let them reassure the parent that it's ok to have fun with the child--therapy is not all.
I would probably also mention the "best practice" philosophy stuff, about how it's most powerful when they provide sort of more "consultive" therapies (which you already mentioned some of -- )
> blend therapy activities into daily living skills rather than
> give extra work for parents to do
What I mean is, therapists who imagine they contribute much to kids' lives by being "excellent clinicians" and knowing a lot about alignment and what all (or as I uncharitably call it, elbow-bending) are really fooling themselves if the focus of their work is coming in, putting their terrific, precious hands on the child and then leaving. Rather, they can have a profound and very far-reaching impact on kids and on their parents when they help parents to come to an understanding of their little babies' and children's bodies and disabilities, their development, their wildly unique humanity and with how their normal, kid develop will/can unfold in light of their disabilities. So, this presumes a very solid understanding of typical child development!! That way, parents will have insights and very good skills and a lot of support from these (hopefully) expert therapists in very, very functional, real, day-to-day ways for embedding "therapies" into everything in a life.
In my oldest son's case, what that's meant is that his "therapies" have been pretty indistinguishable from just living his life -- and I think this was even more true when he was younger. Peter, BTW, is 7 now, and has severe spastic CP and a spinal cord injury, along with some other stuff (acquired at 3 months of age after an otherwise successful heart repair). So, stretching; "working" (really, playing) on gaining improved control of trunk/head; trying to master certain things using arms, hands; moving and playing; and pretty much everything else are just part of what happens in Peter's life. Thanks in large part to very smart, very creative therapists, he has done pretty much what other kids have done at each stage of his life so far -- but also, he's done everything *very* differently :)
Not that this makes it easy or effortless to do all the disability-specific stuff. Nor does it provide a simple answer to achieving that elusive balance where life still happens and disabilities are not all there is, but disability-related needs are also not ignored. The lifestyle of parenting kids with severe disabilities, I think, is a lifestyle of crisis that never resolves. It's not a passing event that is acutely difficult but then gets better: it is CRISIS AS A WAY OF LIFE. (Sorry to yell -- I guess that is impolite in e-mail. I hope you are not offended...).
What this consultive approach has offered me, anyway, is some ongoing ideas and support and encouragement and some help formulating a vision for my son's participation and for his mastery of the usual things kids master - though he is one of the most complex and severely disabled kids most of his therapists and physicians will meet and work with in their careers. It's that kind of expert partnership that has made all the difference for me -- I don't expect therapists to know, really, what to do with/for Peter. Instead, I want them to get to know him and then work with me on devising solutions and hypotheses and approaches to and ideas for all the questions and problems his disabilities present us with. That, I think, is the "partnership" and "collaboration" and work outside of the narrow confines of one's own discipline that is so well regarded these days.
Now, I also know (from talking to many in the association I work for) that many therapists work with those bad, non-cooperative, low-life parents, blah, blah, blah. I don't know. I'm sure there are parents who are disinterested in parenting their kids with disabilities just as there are parents who are disinterested in parenting their kids without disabilities. But I also think that's an easy out. In reality, if therapists were consultants and helpers to parents, at least more ready to fill that role when it fits, I think they could really get a lot of bang for the buck! :)
Fortunately, for me, my PT has been great. She has encouraged me. I also attended a summer workshop and various social events from the school that my PT (and also VT (vision specialist)) at this time "hail from." They encourage parents to see the good and to be advocates for our children.
I have had more trouble with the doctors (and the initial multidisciplinary team) than I have had with my PT and VT specialists.
Where I come from (the backwater of children's rehabilitation services - Halifax, Nova Scotia) - I could not imagine that there would be a receptive audience for the "parental perspective" (or any other perspective for that matter). Well having said that this is what I would talk about if I ever (in my dreams!) would receive such an opportunity.
The most important thing of all (for me) is that they be absolutely honest with parents about what they do know about cerebral palsy and what they do not know. Making stuff up as they go along simply wastes everyone's time and feeds into the frustration and hopelessness that parent of chronically disabled children are prey to.
Secondly, I would encourage them that in their work with our kids that they collaboratively (i.e. with our input) set small, clear, simple goals (at about six month intervals) which are regularly reviewed and revamped regularly. When a therapeutic approach appears to bear little result after a fair trial (several months) this must be admitted and then people should be prepared to revised their strategies.
Thirdly, these professionals need to be open to new approaches (indeed these may be approaches which are not new indeed but may be new to their ears - like Conductive Education) that we parents learn about. They need to realize that no one approach/therapy etc. has the "magic solution" for children with cerebral palsy (as much as we all still search for it!) and they need to open their hearts and minds to new approaches and even "pretend" to show some interest. Working with children with cerebral palsy is no place for conservative, small minded professionals.
Anyway, hope this helps It did me good to have the opportunity to write it.
I read your posting asking for parent input. You probably know and share most of my opinions in that area, but I did think of one idea. You might let them know that we're not born advocates. In fact, many of us don't like that role at all. Will you let them know that we're often forced into playing the "bully" because of the actions of others. I think most parents would rather be friends with the school and therapists. We're willing to forgive a few times, and say yes when we'd rather say no just because the issues seem minor at first. But after awhile, we start to realize that there are some people in some schools who just want their way because they want to be the ones in control, in power. Once we've "given in" once or twice too many times with no sign that the other side is ever willing to do the same, we start our transformation. Eventually, there's a big issue that we feel we must stand up for, and when the school responds in its typical non-thinking power-trip manner, voila! We become the nasty, bull-headed advocates they invented in the first place.
What I found most helpful was home therapy visits. I have two children with special need, one is medically fragile (not so fragile anymore:-) But early on, it was very difficult to take them both to their therapies, especially in winter. It was so nice when the therapist came to the house.
You can quote me. Just don't use my name!
My problem with the medical professionals were how negative they were. They were "writing" my daughter off as "retarded" or something (only her gross motor skills are affected, she is ahead and great in language, social and cognitive skills)! Then, after being negative, now they say "it is not a big deal!" My pediatrician was also initially against her being in the current "early intervention" program, when they have been such a great help. He wanted to push "his cronies", who often blame the parents, are overworked and are not as good. Besides, it would count against our insurance coverage, and we may have eventually lost it!
Lindy Weilgart, mother of Sonja (2), spastic diplegia
I find it very helpful for the PT or OT to set up a routine that can be done every day. A list could be made up of high-priority items to emphasize this week, and then others done as time allows. Mostly, PTs just seem to add more and more exercises without eliminating others from the "list", so they need to be reminded that one has a fixed amount of time (NOT one that is ever-expanding), and for every new exercise, another one needs to be dropped or de-emphasized. Sometimes, so many exercises are suggested that, when one does have the time, one is so overwhelmed as a parent, one doesn't know where to start. You can't do everything.
Also, and I think I've mentioned this before, is that PTs shouldn't be making gloomy pronouncements when they absolutely don't know. One is left as a parent bewildered about what the PT is seeing that you aren't--is there some terrible hidden secret about my child's condition that the tense, lip-biting therapist is seeing but finds too horrible to relate to me? Doesn't it count for anything that my child is sitting independently and able to feed herself?
The PT should find the right balance between always challenging and pushing the child for more, without frustrating the child with activities that are absolutely too undoable. In my experience, PTs aim too low.
Thanks for asking!
In my community a lot of lip service is paid to the idea that the parent knows their child best, but if a parent actually disagrees with the therapist about the child the therapist either becomes patronizing or (one worst case) feels their professional dignity has been insulted.
I think it would help if the parents' thoughts and ideas could be looked at as adding pieces to the puzzle. Our childrens' problems can be complex, and even if the therapist disagrees with the parent, there may be some part of the parent's ideas that could help the therapist help our children, which is the ultimate goal.
In preparing a training module for BC social workers, we sent e-mail notices to three Internet mailing lists which focus on issues related to disability and community: Our-Kids (a list of over 300 families with children who have disabilities) C-Palsy (a list of men and women with cerebral palsy) CommInc (a list of professionals and advocates in the field of community inclusion)
The three lists generated a number of common 'messages' to social workers who will be working with children and adults with disabilities and their families:
I read your letter about speaking with care givers of cp children. I have one suggestion to make. Tell them to take standardized tests and flush them. Every thing I have been told my child would not do she now does. Yeah maybe it's later than expected but she does it.
My point is, each child is different. You don't need a standardized test to tell you if your kid has a problem. You know. The standards test simply knocks the parent down further than they all ready are.
My feeling is that if indeed each child is different why are they being compared to some norm that exists for children not having to deal with cp.
My kid is different. She is mild spastic hemi and she is reading and learning successfully (a's and b's) three languages in grade one in her school. When she was about 3 they told me to start looking into special schools for her because standards testing showed she was somehow delayed. I don't get it. Forget some standards test and deal with each kid on their own. Parents don't need to be driven down further through arbitrary comparisons. This is not science it is cruel demeaning comparison.
I would tell therapists to be more open-minded when a parent approaches them with a "new idea" for therapy. I've approached our PT w/ the idea of using Neuromuscular stimulation but she said it wouldn't work for spasticity even though I told her of a person I talked w/ on the internet who had a spastic child who benefited from it. She came back from a workshop months later sheepishly agreeing with me that YES, it does work on spasticity. Also, I recommended a different type of AFO based on something I read on this list from Cynthia about Cascade AFOs being better than the cruddy kind we had. No, that won't help Josh, she said. We added a new PT and the first thing she did was get him some Cascade AFOs! (Not that I love being right or anything)..... I know PT's are busy but its a shame when I know more than they do. They need to be prepared to do a little homework to keep up with the current trends in therapy and be willing to say "lets look into it" and not immediately jump to No.
I think our best therapists have also been our friend. They've been genuinely concerned about my child, his life, our life, his happiness, etc. and have helped me see the things he CAN do, not emphasize what he can't do. --
I would like for therapists to consider the fact that some parents are working full-time and therefor can not bring their child to therapy during the day. It would be very helpful if it was possible to go to therapy in the evening or on the weekend. We have great difficulties to find that right now.
Cindy Scott Day Granger, Indiana:
I want to second this suggestion. I'm not saying I want therapists to work 24 hours a day. They should be able to put in a 40-hour week, just like most people. But it seems to me some of their therapy hours could be scheduled for evenings, too.
I just want to add that our OT, who Anna has seen since she was just a few weeks old, is the greatest therapist any parent could hope for. She's gentle but challenging, listens, listens, and listens again. She researches things for me, gives me input on things but never pushes. She's extremely forthright about her opinion, when asked, yet has never once acted in an unprofessional manner. And this fall she came to dinner at our house once so that she could watch Anna eat, chew and swallow. I'm going to be very sad when Anna's Early Intervention ends in March.
Arlene & Steve Fash:
Last year was the first year that the PT and OT came to the school to assess and treat Christopher. They did invite me to attend some of their visits but I didn't always find out about them until it was too late. It worked all right at school but I preferred previous years when we went to see the PT. In the past, OT didn't play a very big role. It's too bad, really, because I think that Christopher needed more OT. It was just a question of cutbacks and not enough staff to meet the needs of us all. It's happening again here in Alberta, Canada. At the hospital, one OT was transferred and hasn't been replaced. So the other OT has double the workload. He was supposed to make some neoprene splints for Christopher and every time I chance to bump into him, purely by accident, he has an excuse for not having them made. Why doesn't he say he's just swamped and doesn't have the time? That's the crux of it. It's a real shame that our children are not getting the medical attention they deserve because the government is cutting back health care so drastically. We are lucky in the PT dept. this year, because she actually makes home visits. That's a Godsend when you live in northeast Alberta where it's freezing most of the time.
She has given me some strengthening exercises to do with Christopher but she doesn't make me feel guilty if I don't do them. I find it challenging enough to get the stretches done let alone the strengthening ones. After all, he's in school all day. He usually has some homework and needs to practice his piano plus exercises and a little relaxation time. It makes for a busy day. Throw in Beavers one night, and some things have to suffer.
Anyway, this is my long roundabout way of saying that I prefer home visits or clinic visits to school visits. Now the PT and OT did visit the school once to check on various things and will make another visit later in the year, but for the most part it's one on one with Christopher. I get to discuss any concerns I have, and I receive some encouragement from the P.T. That's very important to me, just to have someone telling you that you're doing a good job. Positive feedback definitely helps me to trudge on to the next set of exercises.