Is it too early to have ds tested? - Mothering Forums

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#1 of 17 Old 01-01-2007, 02:51 PM - Thread Starter
 
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Hi everyone,

This is the first time I've posted on this forum. I've suspected for awhile that ds has "issues" but I'm hesitant to have him evaluated for fear of labeling him.

He'll be 3 in March. He has always fit the description of "high needs" baby as described by Dr. Sears in his High Needs Baby Book. But the definition of "high needs" is only a couple steps away from ADHD or other issues on the autism spectrum. I also wonder if ds might have some sensory issues, too. Here are some of the things I've noticed:
  • He was born 2 weeks early, was only 5 1/2 pounds, and received the Hep B before leaving the hospital (which I'll always regret)
  • He was a quiet, sleepy baby for the first 2 weeks after bringing him home
  • Two weeks later he exhibited "colicky" symptoms, crying, not sleeping well, etc.
  • From early on I could tell he didn't like to be touched; he's better now from working with him, but he still doesn't really like backrubs or hugs
  • He's always been very afraid of noises; as a baby he cried every time we ground up coffee; he tolerates it now but it still upsets him
  • He gets very upset/embarrassed when faced with strong emotions; for example, this morning I was dancing with his new favorite stuffed bear and he started to smile and then turned his head and yelled "no"; he's very sensitive to emotions of all kinds, especially positive ones that involve making a connection with others; he'll say to us (repeating what we've said to him) "I don't have to be embarrassed," but he is.
  • He's still a very poor sleeper, which is a huge problem; he has a strong sleep-suck association and needs to nurse to get and stay asleep; he wakes up frequently all night long
  • He has a great deal of trouble transitioning from one activity to another, even to one that he really likes
  • He doesn't interact well with other kids, but then he hasn't had a lot of experience doing this and in the experience he has had, he's been bullied so he tends to be afraid of all kids
  • He loves to spin; he can stay on the tire swing for 15-20 minutes without really getting dizzy
  • He's pretty hyper; I can't take him to organized events like story time at the library b/c he can't sit still and listen; he's the only child up running around the room
  • He loves books, but can't concentrate long enough for me to read the story; he only wants me to give a summary of it while he flips through the pages

These are some of the big things I've noticed, though I'm sure I'm forgetting some. I just need to figure something out pretty soon because I feel like I'm often working against his personality rather than with it, and the sleep deprivation is hurting our relationship.

Any thoughts or suggestions would be greatly appreciated. I don't know where else to go.

Thanks, Kelly
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#2 of 17 Old 01-01-2007, 03:00 PM
 
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Honestly, I'm not sure. It does sound like there may be some sensory issues. And if you think there may be something bigger going on, then go with that instinct - it's usually right, that mommy instinct. Getting him evaluated can't hurt anything, and can give you peace of mind (whether it's that they find nothing extraordinary about him, or the peace of mind that knowing what you're dealing with brings.)
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#3 of 17 Old 01-01-2007, 03:04 PM - Thread Starter
 
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Thanks for your reply. Who would you recommend seeing? There's a child psychiatry clinic nearby, or would an occupational therapist be better?
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#4 of 17 Old 01-01-2007, 03:07 PM
 
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an occupational therapist can help with the sensory issues, but if I were to choose just one type of evaluation, I'd go with a developmental pediatrician. They see a wider range of issues and would probably be more helpful since you're not sure what's going on.

Then again, I had a lousy experience with a pediatric psychologist - after almost an hour of not doing too much and not really paying attention to dd's history, announced with a smile that dd was not autistic. Well, we knew that! When I asked what could be causing her issues, she had no answer for me.
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#5 of 17 Old 01-01-2007, 03:22 PM
 
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momandmore2,

Hi! I am a preschool teacher and I am studying for my Masters in Special Education. Although, I would need to meet your child to fully understand his needs... The anecdotal information that you provided would lead me to recommend an evaluation for your son.

The thing to do is to call the Board of Education in your area and talk to the Council on Preschool Special Education. (Of course, these are the titles for the NYS area - they may be different from your state). You will then have to write a letter and explain why your son needs an evaluation. Do not minimize your concerns in the letter. The council has a mandated limited number of days before they have to respond and evaluate your son. It is never too soon to evaluate a child. The sooner a child receives services, the better.

It sounds to me like your son may need Occupational Therapy for Sensory Issues. The evaluation will determine what he needs in all areas of development. You do not need to worry much about labels because no one will have access to your son's file unless you give them permission. And, children this young are usually not specifically labeled.

Your instincts will tell you what your son needs,
Laura
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#6 of 17 Old 01-01-2007, 04:15 PM
 
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Hi! It is hard to face these things I know.
I think mommy gut is almost always right. I personally would have my son evaluated (did have). It helped me make decisions. My son has a PDD-NOS (autism spectrum) diagnosis so the things I am doing are tailored to that. I didn't want to wait until he was older to find out if that was what we were dealing with vs. ADD because early intervention is important in autism.
Your list has a lot of things that may be signs of different issues (or nothing but personality) so I would say see a developmental pediatrician. An OT would not be the way to go in my opinion for sorting out what is going on. However, they are good at sensory issues though so would be helpful for therapy.
You mentioned autism. I don't see anything on your list that makes me think yes in particular (some things could be autism spectrum but could also be just sensory and experience). However, there are lots of things you didn't mention in terms of his interactions with you and play and communication that might give you some idea in that area. You may have not mentioned them because they aren't a problem in which case I'd say autism was less likely. Take a look at this site http://www.bbbautism.com/diagnostics_psychobabble.htm if you see some of the things in your son you might be looking at an autism spectrum disorder (you can have an autism spectrum disorder without meeting the criteria for autism--so ignore the two from section one stuff at the beginning). At age three, they can evaluate for autism. ADHD or ADD are really tough at these ages in terms of diagnosis. They won't be able to give you a diagnosis but an idea I would think. It is possible my son has some form of ADD but that isn't diagnosable now; I'm working on that stuff from dietary and sensory angles. I'd say you definitely have sensory issues going on.
Personally, I would have him evaluated so you better know how to meet his needs and help him reach his potential. You should be able to request no formal diagnosis. The first time I was told my son had PDD-NOS I requested that he not receive a diagnosis. A few months later I decided to get the diagnosis but the information was really what I needed and I got that without a formal dx.

Rachelle, mommy to 8 year old boys! 

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#7 of 17 Old 01-01-2007, 05:20 PM - Thread Starter
 
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peekyboo--Would I just call peds in the area and ask if they specialize in developmental issues?

laurajean--forgive my ignorance . . . why do you recommend going thru the Board of Education? Is that so ds gets "in the system" before he goes to school? (I plan to homeschool him, in case that's important).
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#8 of 17 Old 01-01-2007, 05:31 PM
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For a developmental ped, you can ask your regular ped for a recommendation. You can also ask friends, etc. Someone may be able to provide a suggestion. (For example in the Baltimore area, I suggest Dr. Bruce Shapiro at Kennedy-Krieger). Be prepared for a very long wait to get in to most developmental peds.

The school system is not going to give you a diagnosis, at least I think it is unlikely that they will. But once you contact them they are required, by federal law, to determine if your child is eligible for special edcuation. If your child qualifies, they have to provide services. I think this is true even if you homeschool. So your child might be eligible for free occupational therapy, for example. The school system will do their own evaluation, but they have to take into any outside evaluations you have had done. In some instances, you can force them to pay for outside evaluations, but I don't know how you do that or what circumstances are required.
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#9 of 17 Old 01-01-2007, 05:43 PM - Thread Starter
 
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Quote:
Originally Posted by sbgrace View Post
Hi! It is hard to face these things I know.
I think mommy gut is almost always right. I personally would have my son evaluated (did have). It helped me make decisions. My son has a PDD-NOS (autism spectrum) diagnosis so the things I am doing are tailored to that. I didn't want to wait until he was older to find out if that was what we were dealing with vs. ADD because early intervention is important in autism.
Your list has a lot of things that may be signs of different issues (or nothing but personality) so I would say see a developmental pediatrician. An OT would not be the way to go in my opinion for sorting out what is going on. However, they are good at sensory issues though so would be helpful for therapy.
You mentioned autism. I don't see anything on your list that makes me think yes in particular (some things could be autism spectrum but could also be just sensory and experience). However, there are lots of things you didn't mention in terms of his interactions with you and play and communication that might give you some idea in that area. You may have not mentioned them because they aren't a problem in which case I'd say autism was less likely. Take a look at this site http://www.bbbautism.com/diagnostics_psychobabble.htm if you see some of the things in your son you might be looking at an autism spectrum disorder (you can have an autism spectrum disorder without meeting the criteria for autism--so ignore the two from section one stuff at the beginning). At age three, they can evaluate for autism. ADHD or ADD are really tough at these ages in terms of diagnosis. They won't be able to give you a diagnosis but an idea I would think. It is possible my son has some form of ADD but that isn't diagnosable now; I'm working on that stuff from dietary and sensory angles. I'd say you definitely have sensory issues going on.
Personally, I would have him evaluated so you better know how to meet his needs and help him reach his potential. You should be able to request no formal diagnosis. The first time I was told my son had PDD-NOS I requested that he not receive a diagnosis. A few months later I decided to get the diagnosis but the information was really what I needed and I got that without a formal dx.
Thanks for the suggestions. I looked at that link and ds meets maybe 2-3 of all of the criteria, such as not interacting with other kids. But like I mentioned it may be b/c of his negative experiences with them in the past. So, when he's around other chlidren he first watches everything that's going on, looking and listening to them, and then he'll play by himself. He's scared/worried that other kids are going to hurt him. He's a very sensitive child and pays attention to everything, especially to people's emotions. He's very upset by anger or aggression, for example.

One question, when you mention that he could have an "autism spectrum disorder" but not autism, what does that mean? Can you explain a little further?
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#10 of 17 Old 01-01-2007, 10:42 PM
 
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I do think exposure matters in terms of peers. I know with my typically developing son I was a bit concerned because he seemed scared of other children. Then one day in the park a kiddo latched on to him and basically forced him to go along and by the end of the play time Caleb cried when his "friend' was leaving and didn't want to let go of his hand. He warmed up to other children very well after that-I think he was just scared because of lack of experience. He is also generally more cautious. I would, for that reason, disregard the other children part when thinking about your son.
I'll try to explain the spectrum thing. Autism is a spectrum disorder which means kids are affected in different ways and to different extents.
http://pediatricneurology.com/autism...on%20Disorders Has some info. on the categories and differences. PDD-NOS, which is my son, means the child doesn't meet the criteria for an autism diagnosis but has significant enough issues to say they are on the spectrum. In all cases (PDD-NOS, aspergers, autism), how severely a child is affected varies considerably from child to child. In other words, two children might meet the criteria for autism but one has only the six things needed and exhibits them more mildly. Another child has 12 and more severe with each one. An example of severity would be communication. Some children don't speak at all (or until older) and don't compensate with gestures (like shaking their head no or pointing at things of interest which a typical child with a speech delay only who isn't verbal would do). Others may speak at age level or even above but miss out on subtle things like reading tone of voice or facial expression or adding gestures to their own communication. So both have communication issues but one affects the child more obviously.
I hope that helps. I'd be happy to try to answer other questions if you have them. If your son's only issues were not interacting with peers I wouldn't assume autism. You'd be seeing other issues including in his interactions with you!

Rachelle, mommy to 8 year old boys! 

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#11 of 17 Old 01-02-2007, 10:16 PM
 
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"laurajean--forgive my ignorance . . . why do you recommend going thru the Board of Education? Is that so ds gets "in the system" before he goes to school? (I plan to homeschool him, in case that's important)."

Well, I recommend the B of E because it's free. In New York City, it would cost a lot of money to have all areas of development assessed. However, if one goes through the Board of Education, they do not have to pay for the evaluation or future services. And, these services (whatever they may be: occupational therapy, speech therapy, physical therapy, play therapy, sensory gyms etc.) can be very expensive. It is a process, but IMHO, it's worth it. I walk parents through the process on a regular basis. In New York City, by the springtime, all the "good" therapists are booked. So, I usually make sure that I recommend children for evaluations by November. It may be different in your area.

Even the people who homeschool in my area, usually go through the Board of Education for services.

~Laura
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#12 of 17 Old 01-03-2007, 10:08 AM - Thread Starter
 
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Quote:
Originally Posted by laurajean View Post
"laurajean--forgive my ignorance . . . why do you recommend going thru the Board of Education? Is that so ds gets "in the system" before he goes to school? (I plan to homeschool him, in case that's important)."

Well, I recommend the B of E because it's free. In New York City, it would cost a lot of money to have all areas of development assessed. However, if one goes through the Board of Education, they do not have to pay for the evaluation or future services. And, these services (whatever they may be: occupational therapy, speech therapy, physical therapy, play therapy, sensory gyms etc.) can be very expensive. It is a process, but IMHO, it's worth it. I walk parents through the process on a regular basis. In New York City, by the springtime, all the "good" therapists are booked. So, I usually make sure that I recommend children for evaluations by November. It may be different in your area.

Even the people who homeschool in my area, usually go through the Board of Education for services.

~Laura
I know what you mean now. I just called a child psychiatrist yesterday and her consult fee is $600. I'll be calling the B of E like you said.

sbgrace--thanks for the explanation. Based on what you've said, I think it's probably not autism since his other interactions with me seem ok. I'm thinking sensory issues is the main problem, but it will be good to get an evaluation to make sure.

Thank you to all of you who have helped guide me.

Kelly
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#13 of 17 Old 01-03-2007, 07:14 PM
 
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Kelly,
we homeschool but got free OT and speech through the local school. Oh, and many free evaluations. Just call the school district's special ed office.

even if you don't think it's autism, the Dev Ped would be a smart resource to have. just to be sure. And around here, the wait is about a year, so my advice is call now, and if you don't want the evaluation when time comes, you can always cancel. But if you have new worries, you'll be glad you're already in line. And in the meantime, learn more about SID, ADHD, and the autism spectrum. and about your insurance benefits.

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and The Nurture Center Store and Resource Center 3399 Mt Diablo Bl Lafayette CA 888-998-BABY
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#14 of 17 Old 01-03-2007, 07:38 PM
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And around here, the wait is about a year, so my advice is call now, and if you don't want the evaluation when time comes, you can always cancel. But if you have new worries, you'll be glad you're already in line.
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#15 of 17 Old 01-03-2007, 08:18 PM - Thread Starter
 
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I appreciate the suggestions, but unfortunately the nearest dev ped is about 5-6 hours away. I'm going to see a couple of regular peds and if I don't like the advice I get I'll try the child psychiatrist in town. And I'll definitely check through the school board to see who they refer me to.
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#16 of 17 Old 01-03-2007, 08:53 PM
 
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Kelly-
My son is on the spectrum. I wish so much I had known that I could have had him evaluated earlier. We sent him to preschool, but it wasn't public, and they never told us that we could go through the public B of E to get him evaluated. If I had known back then, I would have done it. He has done so well with extra services that it is amazing.

I also wanted to mention that my son was also high needs, and the spinning around was amazing. So it may be that these are some clues. Go with your gut!

 
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#17 of 17 Old 01-03-2007, 10:41 PM
 
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Also, sometimes insurance will cover an initial developmental evaluation (even if they cover absolutely no services). You might check around a bit for evaluation. Dev. Ped. are great if they are close which was why I said that. But the absolute best evaluation we ever had (and she was right on about my son and yet so kind and encouraging) was just a psychologist who specialized in developmental issues in children. I never would have found her had I not done some asking and looking.
I'm hoping your son isn't on the spectrum. An OT should be able to really help with sensory issues!

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