[StephandOwen]

I just got the final report from his eval at the speech clinic at U of M. I'm a little shocked, it appears worse than I believed. It's 5 pages long so I won't write out the whole thing, but here's a little. These are the results of the testing part.

Interaction-Attachment: 15-18 month level

Pragmatics- 12 month level

Gestures- 24 month level

Play- 18 month level

Language Comprehention- 18-21 month level

Language Expression- 12 month level

"Overall, at 34 months of age, Owen's functional communication is at the level of a 15-18 month old child, with his receptive language skills being slightly more advanced than his expressive language and play skills"

"It is recommended that Ms. ******* follow through with the appointment with the Developmental-Behavioral Pediatrics Department at this facility to assess for a pervasive developmental disorder.

In addition, it is recommended that Owen be evaluated by occupational therapy secondary to his sensory-seeking behaviors, such as running into walls."

If you want a peek at what happened at the appointment here's what the papers say...

"When Owen was first approached in the waiting room, he was happily watching television. He periodically pointed to the screen and squealed with enjoyment. When he was told that it was time to go to another room to play with some toys, he began to cry and have a tantrum. His mother had to carry him into the evaluation room where he continued to cry and could not be consoled or distracted by any toys or activities. Eventually, the only way Ms. ******* could calm him was to nurse him, which she said she does at bedtime and to calm him in situations such as this one. Once Owen was finished nursing, he could not be engaged in any toys or testing measures and kept trying to open the door to leave. When his mother and the examiner would not allow him to leave the room, he lied down on the floor and cried/wimpered"

I hate reading these things. It never fails that it's always worse than I imagined.

The good part (cause it can't be all bad, can it?) is

"The prognosis for Owen improving his communication skills is considered good with appropriate professional intervention."

 

[Trishy]

I don't usually post here but I wanted to give you some encouragement. Ds1 had similar test results when he was 3 1/2 in his first preschool. There were a few things in the report that I disagreed with. Mainly statements like "ds1 can not ______." It was not that he could not demonstrate the abilities, he just did not for the examiner. At that age people, especially adults, needed to approach him in a certain way or he would just shut down. I was not present for the evaluation because I felt that I would be a distraction. I know that he would have performed much better had the evaluator approached him in a different manner.

About a year later and without any additional professional intervention (he was attending preschool) he was re-evaluated. I was present and in the room for one part of the evaluation and for the second half I was in the hall but the door was half open so I could hear everything being said. The results of the re-evaluation were that he performed at average or above average for all areas and there was no indication of previous developmental delays.

I feel strongly that unless the evaluator spends a significant amount of time with children of this age and their primary caretakers they cannot perform an effective evaluation. By significant I mean days, not hours.

mama

 

[StephandOwen]

Thanks mama. The results of that eval was basically taken from me answering a bunch of questions, since he refused to interact with the evaluator AT ALL (except for screaming "no" at her). He refused to play with her toys, refused to even look at the testing book, let alone do what she asked him to.

I actually think his receptive langauge is higher than she thinks, but I think it's still below age level.

 

[rbear4]

Steph,

how did they perform the tests to find those levels if he was tantrumming? What evals were used.

I wanted to give you some encouragement too. First, standardized testing is not a concrete, exact science. If a kid is having an off day one day and an "on" day the next time it really can show a huge difference in thier skills and thier results.

Second, when Cait was a bit over 3 she tested around the 20-22 month level (probably a similar result for her age to what you are experiencing) and now at 12 her langauge all came out average or above on her last evaluations. She retains speech therapy but really for mild things in comparison to when she was little. One of her biggest speech issue now is she tends to go on tangeants in conversations and needs to be kept focused so she doesn't bore the listener. Not to darn shabby considering at 4 I wondered if I would ever have a conversation with her. Now she talks my ear off about everything and it is wonderful.

And last, actually when they are little any delay seems HUGE because the tests then are harder to standardized. Honest the difference between 12 months and 18 month level may have been one or 2 questions. With interventions, little guys can make so much progress and your little guy sounds to be doing pretty darn well.

I know a boy who was completely non-verbal at 3 and now they were considering grade skipping him and skipping 4th grade. You really never know how much progress they can make. Owen had a rough day and his report definitely tells you there are things to work on and what those things are, but there is still so much hope.

 

[Jennifer Z]

Wow, that sounds a lot like Zane's evaluation. It was devastating to me too when I read it like that. I was even warned by other parents on a SN board that those evals are written in a way that makes it all sound so hopeless and to not take it too personally. I *thought* I was all ready to deal with it. I was devastated.

After a little bit of time has passed since that first horrible eval, I can tell you that having a good speech therapies and occupational therapist can make all the difference in the world. They not only helped him make advances, but the consistency of seeing him helped built a relationship so that he was more "himself" and they are more able to make accurate assesments (which often are now including *slow to warm*

...that you will not see the "true Zane" the first time meeting him and that he is much more interactive once he is comfortable.) It seems like people take it more seriously when another professional makes those notes than a parent.

Also, they are basically making a checklist of things that need work. All of us would look pretty bad if they only listed our negative traits and none of our positive ones. The things they are picking out are the warning signs for things...they don't treat "normal behavior" so they don't need to note it. They just note the quirks to see if they add up to be anything.

Just remember, evaluators are not looking at your child through eyes of love. However, a good therapist often will, on some level, grow to love your child and is more apt to find the strengths so they can build on them. Just seeing the therapists reactions to my son have helped heal my initial reactions to the evaluations.

The day I receive the evals was truly one of the darkest in my life. It has only been better since that day. It will get better. It will likely be frustrating and terrible at times, but it will be more managable and you will find your footing and a different 'normal' for you life. You are in the hardest part right now.

PM me if you need to talk.

 

[bri276]

reading those harsh words is always so hard, isn't it? something inside me always balks at the diagnosis, makes me feel like "hey, you don't know her, I DO!" And that's true- you know him best. don't ever let them make you lose hope, or look at him differently.

I have even taken it personally when I read about her cleft palate. like, it's not that bad, jerks!!! even when I know it is. It feels like someone is saying something bad about your baby, even when it's meant to be helpful and informative.

I agree that it sounds like the test may have been a bit skewed due to the tantruming. (of course, examiners would just say "well the tantruming is further evidence of delay, blah blah) But I really feel like unless someone HAS a special needs child, they have no idea the difference between how the child acts in a stressful situation vs. when they're in a comfortable environment, in a good mood.

 

[USAmma]

I just wanted to chime in here as well. It has been my personal experience that kids do better in a familiar environment. When Nitara had her first OT eval at 6 mos old she screamed through the entire thing in a really bad way. The only time she stopped screaming was if I held her facing away from the OT, which of course didn't do much to get any sort of eval. She had sensory issues. I knew she had issues but the report made it sound really, really bad. Even said she had tone problems (she was tense from screaming).

Two mos later we had an Early Intervention OT come to the house for an eval and Nitara was very cooperative. She didn't want them getting too close but she was looking at them and mimicking them when they tried to get her to do something. It was so, so much better. She still had sensory issues but at least they were able to see her as she really was, not as a very scared and freaked out baby in a medical type setting.

If you feel that the report was not accurate you can probably request EI to come to your house for a free eval. They also do home therapy for free if he qualifies.

Nitara made great progress with home therapy to the point that I wouldn't have even considered clinical therapy until recently.

 

[lunamegn]

Just wanted to give you a (((HUG))).

 

[StephandOwen]

Thanks ladies.

Quote:

Originally Posted by USAmma If you feel that the report was not accurate you can probably request EI to come to your house for a free eval. They also do home therapy for free if he qualifies. Nitara made great progress with home therapy to the point that I wouldn't have even considered clinical therapy until recently.

Owen's been in EI for about 17 months now, getting ST. Neither of the ST's he's seen know what's going on (despite being in ST for half his life he has not made much progress). They suggested taking him to U of M to see the other therapist to see if she could tell me anything.

I know we need to deal with his behavior issues before I have any hope of dealing with his speech issues (if his ST asks him to do something, even in a nice non-coercive way, he just screams "no" at her). I don't feel he's making progress in ST because he's not willing to imitate or copy anyone (never has, not even me). But noone will tell me how to get him to be willing to imitate someone.

He goes to his dr on Monday morning and we'll discuss what to do next. It will definately include an eval for the sensory issues and I'll also try and find someone else, other than U of M, to do the behavioral one (U of M is taking way too long). EI said since he doesn't have any motor delays then they can't start OT until they have a dr say he has sensory issues and needs OT. We will also discuss an MRI and other testing.

 

[shelbean91]

We've been working on getting Jake to imitate for over a year now, and it's just starting to work.

The only way our ST has been trying is to wait until Jake does something, then she imitates HIM. Over and over. Then she tries something and says 'you do it'. We've been doing that for a long time. We're starting to see progress, but it's slow.

I'm sure your ST has been doing that. Beyond that, there is really no way to MAKE someone imitate.

 

[Lucky Charm]

Steph, I have been following your story for a while and just wanted to offer support and a

 

[MillingNome]

It does sound so hopeless when you get the report! My ds's was really bad too. Let's just say when it came to putting him on the autistic spectrum, he was at the end and I'm not talking the high functioning end

He did not talk, gesture, play, copy. He temper tantrummed, head banged (to the point I thought I was going to get a visit from child welfare), rocked, oc'ed with toy cars and trains, bizzare rituals for eating... yadda yadda the whole nine yards.

So how is he now? In a simple word- good. Partly we got lucky, partly he had great people in the public schools working with him. What you need to do now is bury yourself in reading and observation. Read anything you can get your hands, ask lots of questions, come here and poke around. And watch your son and see what works best for him and your family. One thing that I found was somethings worked for a little while and then had to be adjusted or modified or flat out dropped. Be ready for anything. And I think be ready to be surprised

 

[williamsmommy2002]

I know how hard it is to read all of that on paper. When my ds had his first evaluation wit the school system here, he interacted with them a total of maybe 5 minutes. It went really poorly. By the time he had his last few evaluations, I thought he was doing very well and maybe he wouldn't qualify for much services. His IEP was like a slap in the face. I really wasn't ready for it. The thing you have to remember is that he is still the same Owen as he always was. You just have to know that the labels can help you get help and services for your son.

 

[StephandOwen]

Owen will be getting an MRI and an MRA on Friday afternoon. They originally had it scheduled for tomorrow morning (!) but it was too short of notice and I have to work tomorrow (mom's first day back at work is tomorrow). Before he fully wakes from the sedation he's also going to get his blood drawn for some other stuff. He also has a referral to see an OT who works at the hospital. He does not specialize in kids, so we're not sure if he'll be able to help us, but he should be able to point us in the right direction. Since the U of M behavior team is taking so long (it's been over a month since the referral and we still don't have an appointment) then she's looking into whether we can send him to Toledo or MSU.

Any positive thoughts that the MRI/MRA goes well would be appreciated. I hate the thought of my baby being sedated

 

[USAmma]

(((HUGS)))) I hope it goes well.

 

[bri276]

my dd had an MRI last month. It was very stressful, even though I've dealt with general anesthesia. For her they used Propofol, she went to sleep very quickly though cried because she was nervous when they held her down to put the IV in. When I left the room to go to the bathroom I was told I couldn't go back in because it interferes with the test (thanks for telling me ahead of time!) luckily my DH was in there. I was actually less nervous waiting in the waiting room anyways. She came out of it smiling, and ate well and didn't vomit or anything. good luck, I know it is nervewracking but it's really very safe.

 

[nausicaamom]

Big hugs to you - Michael's MRI was probably the hardest thing I've ever had to do. I hope all goes well.

 

[Jennifer Z]

I don't know what you are having blood drawn for, but I know Zane's blood draw (also done while under sedation for his MRI, so I really know how much stress you are feeling right now) included genetic testing, and I remember one of them was for Fragile X. Also a good idea to test for, while they are taking blood is for heavy metals (lead and mercury at least) and a Celiacs test (if you are dealing with the loose stools that are so common with ASD kids).

I know some people here might frown on this, but I demanded he be given Versed (oral sedative) upon arrival to the hospital. It totally chills him out, made him cooperative for putting in the IV and, hopefully, will cause short term memory loss (meaning he won't remember the hospital). I can't confirm he doesn't remember because of his lack of expressive language, but when we had to go back to the same place for a sedated hearing test, he showed no reaction to the place. (and he can have severe reactions, even refusing to go into buildings, when he has had a bad experience someplace.)

It is probably too late to add a sedated hearing test at this point, but if you haven't had that done, you might consider it in the near future. We didn't expect any hearing loss, but it is good to know that we aren't asking him to do something that is physically impossible for him. I knew that if we discovered, years down the road, that he didn't have good hearing I was going to feel like the worst mom on earth for missing something so basic. Now I know that isn't the problem. We also had a vision test to rule out vision problems since he is such a visual learner and discovered, much to our surprise, he did need glasses. (getting the right Rx is another story for another day...our first eye doc was terrible)

It is likely that hospital policy won't let you add anything on unless it is called in by your doctor, so if you want to add any more testing or the sedative, you might page the doctor and have them add it.

Sorry that was so long. Do you know what to expect from the MRI at all?

I will keep you in my prayers. I know it is really rough to go through, but you will find strength you never knew you had. Hang in there.

 

[StephandOwen]

Thanks everyone. If anyone else has any suggestions on anything I should add to the blood tests please tell me! I plan on calling her on Wednesday (she only works monday and wednesday) to ask her to add a few things. Right now I believe she's just ordered lead (which is required by his insurance but I put it off until his MRI) and mercury. I'm going to call her up and ask about adding genetic testing and a Celiacs test (my sister and her son are celiacs and yes, my son has fairly loose stools, especially considering his age).

Are there any other metals I should ask for? Any other tests?

He has had a hearing test done. Both of his ears are fine, except one of them has a crooked ear canal. Doesn't effect his hearing, though makes him a bit more suseptable (sp?) to ear infections in that ear. He will also always fail hearing screenings in that ear, but with the sleeping test he passed so we know his ears are fine.

He also sees an eye dr regularly (his dad's side of the family has retinitis pigmentosa so there's a 50/50 chance he has it also. As of last year at the eye dr there were no signs of it). He sees that dr again next March.

I expect the MRI to come back fine. Owen's grandma (paternal) has a Chiari Malformation. She just had brain surgery a few months ago to correct it. It *could* run in families. I am just really hoping Owen doesn't have this.

Thanks ladies!

 

[StephandOwen]

Quote:

Originally Posted by Jennifer Z I know some people here might frown on this, but I demanded he be given Versed (oral sedative) upon arrival to the hospital. It totally chills him out, made him cooperative for putting in the IV and, hopefully, will cause short term memory loss (meaning he won't remember the hospital).

If I understand this correctly it's just something that he would drink to make him a bit "out of it"? That would sooo be nice (he is NOT going to be cooperative at all. I guarantee this). But he also refuses to drink most everything. He drinks water and OJ. That is all. He refuses to try any new juices (no, he doesn't have sensory issues, not at all

: ). Last time he was in the hospital (a few days into January) they wanted him to drink some stuff to see if it would stay down (he had bad stomach issues). They handed him the cup and he threw it back at the nurse