I'm hoping some of you can give me some advice about what to do with regards to having my 4 year old DD evaluated. She has been struggling in school and at home since she was about 3. Last year she was in two nursery schools and was unhappy in both. Her teachers voiced concern and I started the process with the school district who made an observation and determined that an evaluation was not necessary. So, I brought her to have some preliminary cognitive testing done but not a full eval. The testing showed that she had some language issues, sensory issues and possible ADHD, in addition to a high IQ. She began speech therapy in June and OT in September. She also started a new school this fall. The new school has been wonderful. The teachers are experinced and mature and know exactly how to handle her. However, they are expressing concern, as is the director of the school. It has been recommended to me to have her evaluated by the professionals that are working with her. So, I had a consultation with a child psychiatrist who (without meeting my DD) hypothesized that she may have OCD, a Tic disorder and ADHD!
I contacted a few places about doing an eval and they are about 4-6k and last 2-3 days about 1.5-3 hours each time. My husband and I both think this is overkill for our DD. She is a very happy, bright, imaginative child who has some quirks. However, I don't want to sweep these issues under the rug. These are some of the issues. The school is concerned primarily about her emotional issues. They voiced concern about her imaginary friends taking on a new level "gock wants me to be mean" and making up names for herself. Also, if she doesn't want to say hello to someone she will tap her throat and pretend she lost her voice. The teachers also mentioned that she tends to try to poke the other children's faces and she screams at someone when she wants them to leave her alone. At home, she has some peculiar behaviours as well. She will only wear panties at home. Clothing has been a battle for some time now. She tends to become fixated with a movie she has seen and act out the movie, which includes wearing the "right" clothing for the movie. For example, now it's the princesses and she will only wear dresses because "princesses only wear dresses". During down time she will gallop back and forth in the family room sort of whispering to herself and says she's playing a "movie". After working with a behaviourist I have gained some great tools in dealing with her and our home life has become so much calmer. Anyway, I'm leaning toward revisiting the evaluation question in the spring and putting it on the back burner. I'm just wondering if any of you have been through something similar with your child/ren and would love some insight.
Thanks for reading!
J- mama to E (8/08) and C (11/10)
Do you live in the US? If you have insurance, it should cover most of the evaluations if you get a referral from your pediatrician. Another option is to have her evaluated through your school district.
I've had my 7 year old evaluated through several sources and typically only paid a $25 copay for specialists, and had very thorough testing through his school for free.
Fair warning: I am not a huge fan of evaluations. My experience is that they vary SO much, depending on the mood of the child, the perspective of the evaluator, and a dozen other factors. And the diagnoses change over time as well. So a label at age 4 may no longer apply in a couple years. In some cases, for example prescribing psychotropic medications, a diagnosis is a necessary prerequisite for services. In that case, I would say go ahead, but it sounds like that isn't your issue.
If you have specific issues or problems going on, an occupational therapist or behavioral specialist may be able to work with you to find concrete solutions. A referral from a pediatrician sometimes means your insurance will pay, but even then, you may not need a "mental health" or developmental diagnosis. If you are going to have to pay out of pocket anyway, even that step is unnecessary.
In my experience working with families with kids with mental health issues, most have had a long series of differing diagnoses. It is clearly not an exact science. Even with an accurate diagnosis, treatment plans are highly individualized (or should be!) and based on addressing specific issues, rather than a blanket approach that covers all the expected problems of a given diagnosis.
My suggestion would be to research all the parenting and therapeutic approaches you can find. If you come across anything that sounds like it might fit your child's needs, and mesh with your parenting style, give it a try. Whether it was intended for kids with ADHD, autism, sensory issues, trauma history, whatever, if it helps, keep it, if not, toss it. If an occupational therapist or behavioral consultant can help by steering your research or suggesting interventions, go for it! Could the behaviorist who has worked with her already observe her in the school environment, and work with the school staff on a plan for the school issues?
Rhu - mother,grandmother,daughter,sister,friend-foster,adoptive,and biological;not necessarily in that order. Some of it's magic, some of it's tragic, but I had a good life all the way (Jimmy Buffet)
Thanks for your replies! She has been in OT and the behaviourist who I have been working with to help her did do a blind observation in the school. She basically said that she didn't need to give the teachers much help as they were doing all of the right things. However, both she and the speech therapist (who also did an observation in the school and said the same thing about the teachers) are recommending an eval for possible emotional/behavioral problems. One of our problems is that our insurance will not cover speech therapy, so we are already paying out of pocket for that and they will not cover an evaluation that is out of network and the closest person in network is about 45 minutes away, and frankly I don't trust just anyone. I would rather bring her to someone who is recommended. Anyway, I hate to make this about money but I really feel like it's unnecessary to spend all that money on something that is going to give us an answer that may change in a couple of years. I like the suggestion of doing my own therapy research, I will do that. thanks
J- mama to E (8/08) and C (11/10)
Just to give a counter response: I have always been really glad that we had my kiddo evaluated. It did cost a lot (out of pocket), but in our case it provided a single, clear-cut diagnosis that made sense (Aspergers) and allowed us to provide the most targeted help for him. It also eliminated the voices in my head that were constantly wondering what was going on. ("See, he's just gifted. No, that looks like anxiety. Now that, that looks like a kid on the spectrum." It was crazy-making!) He is still on the spectrum, but has made incredible progress and is so much more comfortable in his own skin than he was. He was anxious and clingy at 4 and now, at 9, is confident and fairly self-aware and performing beautifully in a mainstream private school with no supports.
For us, I think the key was finding the right person to evaluate. I got referrals from a yahoo group for the parents of special needs kids in my area and then interviewed a bunch by phone before committing. I felt completely confident about the skills of the evaluator and that made it all worth it. I specifically asked, for example, could she differentiate between ASD and anxiety and giftedness and ADHD, all of which are possibilities for kids like ours.
Good luck, whatever you choose! It sounds like you are doing lots of appropriate interventions already and are lucky to have a great school situation.
I agree with mamarhu 100%. I think if you are struggling to find things that help or you need a diagnosis to get specific services through your school/insurance then an evaluation might help. But, if you are trying things that seem to be working and you don't need a dx right now, I am convinced that evaluations are often useless. Though your insurance might cover speech therapy if you got the "right" dx (which has its own set of ethical questions regarding labels for your child just for services).
We have had a series of evals for our DS and it really, really is clear that the results of an eval will depend on so many variables - what is the inclination of the evaluator, your child's mood, the day of the week, the weather, etc :) Unless your child has a very clear cut issue (and it sounds like your DS doesn't have a "clear" problem), you can and will get a different dx from each eval. Some of my friends have gone through 5 or 8 different diagnoses, gathering a different one from each professional they dealt with.
All that said, I have been thankful we went through the evals that we did, mainly because it helped me understand what really was going on with our DS and also helped me seek an excellent dev ped that finally spent the time and energy to pull apart what the core issues are. But our DS has much more serious problems than your little one and so we needed to make sure our interventions were addressing the right things. It ended up costing almost 6k which is definitely not something I would have spent if I hadn't been so confused by previous evals saying very different things.
We just went back Friday for a re-eval and further IQ assessment - still $180 for any/all assessments we think are necessary/beneficial, $90 up front, $90 when they give me the final report.
KU is a good 7 hr drive for us, but well worth it for.the low assessment cost. I am not as pleased with the evaluator this time around, but we will see....I do like that *I* will get the report, and if I disagree with it or it doesn't serve DS' needs at school, I just won't share it with the school.
DS was originally diagnosed at age 7, a little on the young side according to KU, but ASD definitely fit him. We also went to Tue KU clinic for counseling back then (we lived in Lawrence at that point, as I was a student at KU, and sessions cost us $6 per visit! Lol. ). That was so helpful to me in trusting my instinct s and insisting the school listene to me (they STILL didn't, even with his diagnosis, and we homeschooled for second grade). I had been parenting him exactly as he need ed, but his teacher only saw a stressed out single mom with 2 special needs kiddos, and could not accept that DS' Aspergers was real and not "caused" by me. Ugh.
Sorry for typos, I am on my phone and the keyboard hates me lol!
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