Tell me your experience re: learning the diagnosis - Mothering Forums

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#1 of 8 Old 04-03-2013, 09:56 AM - Thread Starter
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Hello Everyone - full disclosure - I my self do not have a special needs child per se (anxiety/sensory issues etc) I am a special ed teacher by training, work with families and teachers of those with autism and am planning a training for early child care providers on how to help identify kids early and get parents to follow through with an evaluation.


I would like your stories, good and bad - about learning your child's diagnosis -

I imagine here on this forum with all you informed mamas, many of you noticed long before a child care provider - but I would be particularly interested in anyone who was told by someone else that an evaluation may be called for?  How did it feel to hear the news? Did people say things that were particularly hurtful or helpful? What suggestion might you have on how to best approach the subject so it can be truly "heard"?


And even if you were the one to first suspect an issue, and you want to share your thoughts and feelings I'd be glad to hear them.


If you want to private message me that is fine too...


Thank you!

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#2 of 8 Old 04-04-2013, 04:55 AM
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Hi bonamarq.


  I actually was pretty sure that each of my kids had some issues before anyone else brought it to my attention.  With my first son, I could tell that there was just something different about him.  I knew that kids develop at different rates, but he just didn't seem to be hearing me a lot of the time, his words were kind of smooshed together, and he was constantly bouncing from one thing to the next.  Transitions from one thing to the other would set him off into an unconsolable tantrum.  I think I really knew for sure when I saw him with his classmates in Preschool.  Honestly, I am still really annoyed that the preschool never said anything, because now I know he would have qualified for early intervention.  Long story short, he is on the autism spectrum.  He's turning 14 in a few weeks (How did that happen?!)  He has been in special ed since K, and he's going to highschool next year.  Suffice it to say, the special education he has recieved has been above and beyond amazing!  The only really rotten thing that was said to me by a teacher was in second grade.  She was a regular ed teacher and during an IEP meeting she said something along the lines of, "Oh,his poor wife someday.  That's if he can ever get someone to marry him."  Suffice it to say, I was horrified and so was his special ed teacher.   


With my second son, we realized there was an issue in 2nd grade, when writing became a bigger part of his schooling.  Suddenly he was crying before school and sad when he got home.  The teachers and I came to the same conclusion at about the same time.  Turns out he is gifted with a learning disability.  I haven't really gotten a lot of negative comments about ds2. 


We are in the process of getting my third son evaluated.  I've suspected for the last few years that he has ADHD, but I wasn't sure if he was just hyper and incredibly distractable just at home or at school too.  His teacher last year said that she thought he was just immature, and despite my doubts I decided to let it go another year.  His teacher last year was amazing and hands on, but suffice it to say, her and ds3 were two peas in a pod!  LOL!  I figured that maybe with a more structured environment and teacher maybe he'd be more focused.  Unfortunately, not so much!  His issues are just more pronounced.  I finally requested an eval, 3 days ago, and immediately got a message back from his teacher telling me she was planning on contacting me about the issues she has been seeing in the class.  I wish she had contacted me earlier so that I wasn't going back and forth about what to do. 


Honestly, some of the most hurtful things that have been said to me were things from family.  With my first, it was denial that there were issues, until my older sister who I adore and is a special needs teacher, got a hold of them.  With my second son it was the "He's so smart.  He shouldn't be struggling in school.  Maybe you just aren't being strict enough with him."  With my third it is the, "Oh, it's just his age.  He's fine, you just need to be tougher with him."  


As for how I would want to be approached if I was unaware of the issues, I'd say always present the positives first.  Then present the struggles you are seeing and ways that you think could help the child with those struggles.  Basically, putting the most positive light on things, focusing on how special ed help could make things easier on the child, and lead to more success later on would be the way I'd want to be told.  I think being prepared for the fact that some people may be defensive regardless of how you present it.  So be compassionate. 

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#3 of 8 Old 04-05-2013, 08:39 AM - Thread Starter
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Thanks for all that great feed back! I will certainly include my disccusion about the challenges from within the family itself! And the compassion around that judgement you get from others -

I find it really infuriating that as a society - we are so quick to blame parents for any and all behavior challenges - we blame the kid for acadmemic problems - and chalk it up to just good luck for those who do really well!


I am hoping some first hand experiences and anecdotes will highlight how (and how not) to be compassionate -


That gen ed teacher should have been slapped (and I don't beleive in in that) - but some times it seems like the most appropriate response


For anyone else that wants to reply - would love to hear - even just some 'basic advice' if you have any...

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#4 of 8 Old 04-05-2013, 03:08 PM
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No matter how it's presented it's often hard to face that stuff and the parent will probably always remember when x was first mentioned. It shouldn't come from a family member--I feel strongly about that.

From a professional I think it's best to start with positives, mention that there are some areas of concern that might benefit from treatment, and then suggest an appropriate professional evaluation. I don't think speech therapists, OT's, public school teachers, pediatricians, and the like should weigh in on specific diagnosis though that are outside of their expertise. So a speech therapist should be able to weigh in on apraxia of speech but, in my opinion, shouldn't speak toward possible autism either way for example. I had many, many therapists and even our pediatrician insist there was no way my son was autistic when I was concerned myself. That made it harder. And it could go the other way too. I had my son armchair diagnosed by a pediatrician with something developmental/outside of the doctor's area of expertise and the pediatrician was absolutely wrong.

We started Early Intervention at 6 months when the pediatrician expressed concern about missed motor milestones. I remember being upset and asking if we could work on rolling a little longer and she told that would be fine. I don't think she brought it up negatively, though, it's just hard to have someone tell you your child is different.

As far as autism, I had been concerned and had been told by many people, including therapists and pediatricians, that I was worried over nothing. My son started pointing and doing some other missed things and so I convinced myself they were right and he was just fine. A substitute OT filled in for our regular OT one day. She watched my son working with alphabet magnets (he was super into, and good at, the alphabet....I didn't realize that was autism). She told me, nonchalantly, that her autistic son was just like mine when he was a toddler. I smiled and acted normally. When she left, I threw up. It was, seriously, terribly hard for me to hear from someone else for the first time.

Rachelle, mommy to 8 year old boys! 

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#5 of 8 Old 04-05-2013, 04:58 PM
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I have a kiddo on the spectrum and worked as a parent education teacher in a parent-participation preschool. I did a professional development day for my colleagues about recognizing potential developmental issues and discussing them with parents.This is pretty-ASD specific, but certainly generalizable.


We focused on discussing what is typically expected at a given stage and what we are seeing in the child. One great example I remember was a simple art project for a 3-year-old class. The kids were pasting wheels on the body of a train. Some got them in the right spot, others didn't, but one boy lined up about 8 wheels in a row on the train. It was dramatically different than everyone else -- and gave the teacher a very concrete way to show the parents how his development was different. He was eventually diagnosed with Asperger Syndrome.


We also talked about how we are not qualified to diagnose or even suggest a diagnosis. We had a handout prepared with contact names and numbers for folks who can evaluate kids and tease out typical from ADHD from anxiety from autism.


I never had anyone say anything terrible to me, but none of us (me or my fellow teachers) knew at first that what we were looking at with my son was ASD. Everyone said, "no, it can't be that" when in fact, it is. I think it is important to remember what is in our skill set as teachers (identifying deviations from what we normally see in a specific age group and gently discussing that with parents) and what is not (saying what that difference in development is or isn't).


I am not a super big fan of Autism Speaks, but they do have some nice videos that show how play differs between typical kids and ASD kids. Many people picture only severely affected ASD kids and then say my DS or Rachelle's couldn't possibly have autism. I think it is helpful to know what the range looks like.


Hope that helps!

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#6 of 8 Old 05-17-2013, 12:04 PM - Thread Starter
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Thank you everyone for your replies - more stories still welcome? Seems no matter what the topic most of  the mamas here can be counted on to give spot on advice!

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#7 of 8 Old 05-17-2013, 03:51 PM
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My DD had a near-SIDS event at 4 months of age, so we knew the issues long before anyone else.  However, when DS went to Kinder, he was experiencing some difficulties with the transition, so we brought him to a therapist who evaluated him, and followed him for a few months.  She recommended GT testing and felt like he needed to be given stricter boundaries in the classroom.  In first grade, he really started to struggle and i was beginning to think ADHD.  We met with the teacher and admin and asked to have him tested for ADHD and Dyslexia.  The school psychologist announced to me he would also be screening for autism since DS exhibited many of the signs of autism.  Now I have been a pedi nurse for 13 years, my older sis teaches special ed, and my younger sis is a lmsw, and we have all worked with our share of kids on the spectrum.  My son is not.  I informed the psychologist that my son was not on the spectrum, but as long as they did the eval for ADHD and dyslexia, they could test him for autism as well.  Now if I had not had experience with ASD or another special ed kid, I probably would have not been so laissez faire about the whole situation.  As it turned out the psychologist had to had over the case to someone else because my son refused to speak with him.  He has ADHD mixed type, and we were able to get the services we needed, but the actual testing process was not handled well.

Wife to M , Mommy to DS aka Captain Obvious  (06/06) and DD aka Lissalot  (03/09, anoxic brain injury)
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#8 of 8 Old 05-17-2013, 05:06 PM
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My best example is a woman who had taught adaptive PE for several years, and was a personal friend. She was always careful to use language that clearly described what she SAW without drawing any conclusions about what it MEANT.

but everything has pros and cons  shrug.gif

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