What frustrates me?
As someone who works with children with special needs on a daily basis, I can only imagine how difficult it is to have a child or children at home with these needs. Doing everything you can for your child and keeping sanity in your house must be extremely difficult, resulting in many frustrations of your own. What I want to discuss are my frustrations from the other side, in an attempt to help you as the parent understand where we are coming from.
1. I enjoy frequent communication with you about your child and enjoy even more trying to help you problem solve an issue your child might be having at home or at school. What frustrates me is when I put forth great effort to help you with suggestions and activities for you to do at home and find out later that you haven’t even tried any of them and are still asking for help.
2. What frustrates me is when a parent expects me to fix their child. You have a wonderful child with both strengths and weaknesses. My role as your child’s therapist is to help your child participate and be successful with completing certain skills that they are having difficulty doing within his/her abilities. It is like the saying; “there is more than one way to get a job done”. In many cases, my job is to find that other way.
3. I know parents are often not experts when it comes to child development and developmental milestones. I can help you there and provide tables. What frustrates me is when you are expecting skills beyond your child’s developmental level. A simple web search can yield what is appropriate or ask me for that information…I am happy to provide you with it.
4. As a parent of one child with another one on the way, I am sure there will be many days when I compare my girls. What frustrates me is when you compare the skills of one child to the next. Even if your children were the same age, had the same abilities and disabilities, and participated in the same programs, there are still countless factors that contribute to your child’s development. It is unfair to compare them.
5. I haven’t had to deal with developmental pediatricians or other medical personnel explaining my child’s diagnosis to me, but what frustrates me is when I have to explain something essential to your child’s prognosis with you when you should have been made aware long before ever meeting me. For example, I have had to explain tone at least 4 times this school year. These were all situations where the children were receiving ongoing medical interventions to address such tone. The parents asked me what we could do to “fix” the tone. I am writing an article on tone itself but in a nut shell here it is. Tone is neurological and can only be permanently “fixed” with surgery or medicines. Various techniques including tendon tapping, casting, icing, vibration, and gentle rocking to mention a few can only temporarily affect tone. More appropriately would be to modify the task that the tone is impacting to increase your child’s success. In two of these four conversations, the parent was brought to tears in learning this information. I think knowledge is power and am happy to provide you with such, but how frustrating that the doctor did not explain this to you. I would cry too.
Just letting off a little steam! I really do love my job!
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I can’t wait to read the article on tone! My husband just asked this question- again- last week. None of the answers we’ve gotten thus far have been concise or understandable.
We are (relatively) intelligent people who are well educated in each of our chosen professional fields. This in no way means that we will automatically understand these new medical terms no matter how much we love our children.
The question then becomes ” to whom are we most comfortable showing our ignorance?” Yup, that’s right. We talk to our therapists, too. We see them the most often and they know us better than anyone who is in our lives offering assistance.
Our daily family life is no where near as frustrating as is keeping up with medical issues, organizations that offer help (and the ones that need fund raising help in return), and planning for my child’s future.
Of course, I could be completely wrong about all this. My daughter won’t be 2 years old for another month, yet. I do know that we would have lost our minds if not for our wonderful therapists.
It sounds to me like *much* of your frustration should be aimed at doctors rather than parents.
In our experience, doctors say things like, “oh, he’s kind of got low tone, we’ll send him to therapy and that will make that better” – what people hear is that therapy fixes things, just like medications and surgeries.
Doctors ask, at every well-child appointment “does your child do X, Y, and Z? No? Oh… well, therapy will get them caught up” – we can’t help but compare, because they’re comparing too.
Or you end up like us, with no real idea anymore what constitutes age appropriate…doctors ask, “well, what does he have trouble with?” and it’s only later that the therapists point out that the things we’re concerned about are not yet appropriate for his age – not the doctors!
And I think you’d be surprised at how little explaining most docs do. It’s obvious to them, so they forget to mention it. Or they just don’t know – our neonatologists told us our son would never eat with a trach and that he’d develop severe oral aversions; he is mostly orally fed these days, including things that usually are hard for kids with sensory issues.
I’d also suggest keeping in mind that parents aren’t going to manage every homework assignment. When my son was a year old, he was in therapy 10 hours a week, sleeping 14 hours a day, and requiring an hour for each of 4 feedings that he attempted each day. There has to be a balance – kids need time to just be kids, and parents need time to just be parents, not therapists, nurses, behavioralists, chauffeurs, and personal assistants (managing all our doctors, therapists, nursing schedules, and the like could be a full time job all by itself!)
I think it’s fair for you to say what frustrates you – it is only fair because I also get to say what frustrates me.
Ah the homework! Janet really hit the nail on the head! When both of my kids were in therapy (15 some appts a week at the ages of 3 and 4 months old) it was nearly impossible to do the basics and at the time I carried a lot of guilt when I let things slide like body brushing…only doing 3 times a day instead of 5! Or sitting in beans only once a day not three!
I totally get it though…the frustrations! But we too, do love all of our therapists – they were our lifeline to what is typical and what is normal for my child.
I would like to tell you my veiw on number 4. Having a child with disabilites is very hard to come to terms with and I would constantly compare Nick when he was younger because I was trying to find some sense of “normalacy” in him. I tried really hard to try and “catch him up ” with everyone else. In the end a wise doctor told me to accept him for who he is and then I realized what was happening. I was so caught up in the “normal” I forgot about what was important and that was to encoarage and support him . He is who he is and now I would not change that for the world but in the begining I thought being normal was the best thing for him. As parents we have so many different emotions maybe you can just help them realize what is important and encoarage them to find out their own child’s “normal”.