If I was asked to train professionals to be more sensitive to PARENTS of kids with SN, I would say..

[Anonymous]

+++First a disclaimer. Many of the professionals we have encountered are great and they already do this. This is just some food for thought for those who don't. Also, i know many professionals, especially those in hospitals, are over worked and over booked and they would like to be able to do all these things, but they are only human.



***Collaborate. You are not as much of an expert as you think. The parent knows the child better than you do. Treat the parent as a colleague and don't talk down to the parent. You both have vital knowledge to share in order to figure out the optimal care for the child.

***Try to show empathy, this is different from pity.

***When you catch yourself thinking "She's one of THOSE moms" and you start rolling your eyes, stop and think. Why is she acting like that? What has she been through? Am I stereotyping? Am I jumping to conclusions?

***Read the file. I repeat, read the file or at least skim it right before you see us. I go out of my way to xerox everything for professionals and to make sure professionals communicate with eachother. Please don't spend our time together asking me about stuff that is in the file especially since we have so little time together.

***Know that we read, we read a lot. Many of us have read every article and book on the topic of our child's special needs that we can get our hands on. We go from expert to expert. Get a sense of what we know before you throw something at us which is so basic it's insulting. Really, kids with autism sometimes have some obsessive-compulsive features? Gosh, I've lived with my kid for 7 years and read every article out there and you think I don't know this????? What, kids with autism can be anxious? Really? You think this is news to me? Kids with autism potty train late? You don't say. Oh wait excuse me while I go change my kid's pull up which I spent a fortune on and had to order from a special company because most stores don't sell pull ups for a kid this size. I had a professional use a hoity toity voice to tell me a bunch of basic things even a person who took psych 101 would know and she talked down to us to boot. Did she offer viable solutions and support? No, because she seemed to know much less than we did. I think she must have learned about autism decades ago. I felt like saying, give me $150 back you thief and fraud!

***Admit when you don't know. We can smell bullshit.

Anyone else have suggestions to add?

[Anonymous]

The "read the file" point drives me crazy. I provided all the info to you ahead of time at your office's request, please review it before the appointment. It is so aggravating to see them skimming trying to remember the gist of your child's life and only half-listening to what you are saying.

[Anonymous]

OP, I am so with you, especially your next to last point of being talked down to. I want to scream at some of the county people who don't take into account parents' different backgrounds and instead lump us into one big SN group.

[Anonymous]

One bad experience - Dr. Penny Glass at Children's Hospital.

She treated us as if we knew nothing and could understand nothing, but she didn't have any stellar suggestions either.

It makes me mad, because some parents we saw in the waiting room were uneducated and nervous, and probably would tend to rely on her "judgement" more than my DH, for example, who is an MD. Talking down to someone who does not come pre-armed with knowledge is a horrible thing to do.

[Anonymous]

Anonymous wrote:The "read the file" point drives me crazy. I provided all the info to you ahead of time at your office's request, please review it before the appointment. It is so aggravating to see them skimming trying to remember the gist of your child's life and only half-listening to what you are saying.

Agree - this applies to school too. We had a meeting with one of our son's teachers to discuss an issue that was concerning us (and we had data documenting it) but she did not read the material in advance and the meeting was not helpful.

[Anonymous]

1. Read the (freaking) file
a. We are both the moms (see 1) and no, I am not my daughter grandmother, but thanks for that
2. Do not assume that I am an illiterate drug addict
a. Read the file
b. Do not read things aloud to me, I can read

[Anonymous]

1. At least pretend you read the whole file and ask SPECIFIC questions. (River School and Lab School were great at this.)

2. Ask parent to tell you what's great about the child. What makes them laugh or smile?

3. Admit if you don't know something or you aren't sure. Don't fake it.

4. TNTSICA Try not to speak in clinical acronyms.

5. Tell parents what they're doing RIGHT. Probably more than you think.

[Anonymous]

1. Understand that the "refrigerator mother" theory has been disproven. Parents do not cause autism, so don't focus on looking for reasons to blame them, but rather what you can do to help their child.

2. Understand that most parents work full-time jobs, and that managing a child with special needs is like having yet another full time job. For this reason, don't waste their time by coming by going to their home unprepared and without giving careful thought as to how you plan to help their child.

3. Understand that parents are dealing with constant stress and worry, compounded in many cases by lack of sleep due to their child's sleep disorders. Do what you can to help provide parents with encouragement to continue to struggle to help their child.

[Anonymous]

I know my child better than you do. I am with my child 24/7 whereas you see my child only a few times a week, if I tell you that my child has a specific issue, my child really does have that issue: just believe what I say!