<<IEP meetings >>

+1

Try to sit and think about what your clients families have been through and then think about your role in being part of the solution not part of the problem. Here's a sampler of what a SN parent might face

the hospital stays and surgeries

the pain of seeing your child, your BABY suffering

the many doctor visits, so many of which were useless

the endless time in waiting rooms

the fear when milestones are missed

the money, money and more money spent to hit those milestones

the amount of time that goes into helping our kids develop

the pain of assessment after assessment implying your baby is broken. (Some make it sound this way, please be sensitive to how you present delays). Ask what we have done so far instead of assuming we have not already gotten interventions.

the flippant attitude of the pediatrician

the teacher who doesn't want to deal (this was rare for us and I have so many teachers who have earned my endless gratitude)

IEP meetings

The difficulty paying for basic things because of all the money spent on intervention

Tha pain of dealing with unprofessional professionals.

Family members who don't get it, don't believe it, think that it's your fault.

The stares in public. The rejection from other families.

The isolation. (We are past that, but it was something we dealt with when the issues first became apparent)

Please respect my time and money. I work hard to be able to pay you. If we are at a hospital which takes insurance I suck it up knowing the doctor's are probably overbooked and understaffed, but if I am going to private practice I expect it to be worth my money.

Keep in mind many of us are not getting reimbursed much if any for the money we pay you OOP. If you are supposed to give a 50 minute hour-do so-even if 5 of those 50 minutes are feedback to me. Don't keep taking us late and end on time and frankly don't be late and end late. Don't use my time to chit chat with other parents or make calls. I have other things scheduled and if I am paying you I don't expect you to make me late.

Please don't talk to me like I am sad 5 year old who lost his mommy. Maybe that voice works with my kid, but please talk to me like an educated adult.

Love the don't call me "mom" comment and "Holland".
Also, please get there referrals done when you say you will.

Anonymous wrote:Don't put up or distribute that idiotic "Trip to Holland" story.

+++++1!

Anonymous wrote:
Don't call me "Mom." I'm not your mother.

+1

Don't put up or distribute that idiotic "Trip to Holland" story.

If my child cries during every single visit, it's a sign that something isn't right. It doesn't mean that she doesn't like doctors, although she may not.

Lower your voice. Please.

Don't call me "Mom." I'm not your mother.

Be email accessible.

Don't read the chart while I'm talking, especially if you initiated what I'm saying.

Don't send in a medical student and resident after we've waited two hours and then expect that my child will submit to multiple physical exams or cooperate with you.

Be our advocate. Get a young SN child the first surgery of the day, even if it means dealing with anesthesia, radiology, and surgery. Have you dealt with expecting an underweight special needs child to fast until 2:00 in the afternoon (which means 5 by the time of the operation)?

Explain what the goals of the therapy are. Don't try something different every week hoping it will work. This is money that we might be taking from other children who don't go on vacation, or get new clothes, or a house payment.

Please be aware that our children go to school, need to go to school, and like going to school. Scheduling appointments during school time when they could and should be scheduled before/after school is insensitive. Similarly, we go to work.

Seminars and informational gatherings are great. They are not great when they are held at 9:00 in the evening when we are exhausted, have to hire babysitters we can't find, and have our children in bed. Please consider the weekends or mornings.

Anonymous wrote:Don't treat me like I am in denial about my DS' issues. Trust me, I'm not in denial.

I really hate that one.

YEEESSSSSS! I think some of them are in denial about how crappy and/or unprofessional they are.

Don't treat me like I am in denial about my DS' issues. Trust me, I'm not in denial.

I really hate that one.

One of the professionals I like often says he feels "honored" to work with the families he sees and as bullshitty as that sounds he says it with sincerity. It should be an honor to work with us-all of us dammit. He is onto something. We have faced many challenges and we will do anything for our kids. It's a beautiful thing to support the families and help the kids bloom.

If you don't feel honored to work with us, well then don't work with us. If your eyes roll when you think of us, please let us go find someone who cares.

I can understand if they work for themselves but if they are part of a large practice would it really behoove them to hire someone who can bill insurance companies?

Take insurance. Seriously. SN parents have enough things to worry about and most OTs don't take insurance making our lives just that much harder.

I have so much respect for the really good professionals who are on insurance panels. They care about the bourgeoisie.

Be in-network for insurance.

What would you highlight...I have dealt with duds and I have also dealt with professionals I hold in high regard who made a difference. Based on my own experience as a SN Parent...Here's what I would want to convey

1. We are experts on our kids and we have a lot to offer. Collaborate. Do not talk down to us. We are not idiots.

2. Do not accept money from us if you don't know what you are doing. If you are in over your head, refer.

3. R.E.S.P.E.C.T....find out what it means to me.

4. If you don't connect well with the parent, you will not be as effective with the child. You need the parents to be your allies.

5. Get reports done on time and make sure you use the child's name, not some other child's name. If you cut and paste, make sure you described the right kid.

6. Don't talk out of your ass. We can tell. If you don't know...say so.

7. Deal with your own issues. It's OK if professionals have the same issues as our kids, probably makes them more empathetic, but if they do, they need to get proper treatment. If your mood swings, anxiety, OCD, attention deficits, processing issues, etc are hindering your ability to give quality care, then follow your own advice and get the help you need.

8. Don't be flippant with recommendations.

9. Get over yourself. Keep your arrogance in check no matter how accomplished you are. Be humble and understand that there is always more to learn.

10. Don't play favorites. It pisses me off when an interventionist uses my child's appointment time to schmooze with another parent. Even worse, don't get reports done for my doctor's kid within a week and then take 11 months to get a report to me. I should not need to be your colleague or superior to get quality care.