The moment parents realize their child might be delayed in a certain area, such as speech or walking, we often try to talk ourselves out of it. Here are common thoughts:
1. "My doctor said that boys often talk later than girls."
2. "I think the reason my daughter isn't walking is because she's learning to do other things."
3. "My son isn't talking because his older sister talks for him."
4. "We put so much pressure on kids these days. Won't they all learn what they need to do in their own time? After all, no kid goes to college crawling/in diapers/etc."
********************************************************************************
When I first realized that my son might have some delays, I had a pit in my stomach that wouldn't go away. I also had a lot of fear - what did those potential delays mean? Would he ever catch up to his peers? And was this about ME putting too much pressure on him to be "age appropriate?" Or was there really something wrong and he needed help?
Early Intervention will provide a free evaluation for children under the age of 36 months. You don't need a doctor referral - you can call them yourself. More info is avail in the "looking for therapy - age 0-3 yr" section, and "looking for my state's early intervention program" section.
However, if you are in the "I'm not ready to call EI yet, I just want to figure it out for myself," I totally understand. So this section is for you.
The first thing I would do is look for a development chart published by a reputable source. I have linked a CDC chart below as one example. [I realize that some parents are not a fan of developmental charts. They are usually the parents who realize their child has a delay. I totally understand the fear and negative reactions to charts, because I was there too.]
Here is the CDC chart that I mentioned above:
http://www.cdc.gov/ncbddd/actearly/interactive/milestones/social_index.html
1. Click on the age of your child
2. Social & Emotional info will appear
3. Select another tab at the top. For example, "Movement."
4. Click on the age of your child
5. "Movement" info will appear
Example: My son is 18 months old. I feel like something is wrong with his speech. Is he delayed?
Click on 1 year (12 months):
Social/Emotional:
Shy or anxious with strangers
Cries when mother or father leaves
Enjoys imitating people in his play
Shows specific preferences for certain people and toys
Tests parental responses to his actions during feedings
Tests parental responses to his behavior
May be fearful in some situations
Prefers mother and/or regular caregiver over all others
Repeats sounds or gestures for attention
Finger-feeds himself
Extends arm or leg to help when being dressed
Movement:
Reaches sitting position without assistance
Crawls forward on belly
Assumes hands-and-knees position
Creeps on hands and knees
Gets from sitting to crawling or prone (lying on stomach) position
Pulls self up to stand
Walks holding on to furniture
Stands momentarily without support
May walk two or three steps without support
Hand and Finger Skills:
Uses pincer grasp
Bangs two objects together
Puts objects into container
Takes objects out of container
Lets objects go voluntarily
Pokes with index finger
Tries to imitate scribbling
Cognitive:
Explores objects in many different ways (shaking, banging, throwing, dropping)
Finds hidden objects easily
Looks at correct picture when the image is named
Imitates gestures
Begins to use objects correctly (drinking from cup, brushing hair, dialing phone, listening to receiver)
Language:
Pays increasing attention to speech
Responds to simple verbal requests
Responds to "no"
Uses simple gestures, such as shaking head for "no"
Babbles with inflection (changes in tone)
Says "dada" and "mama"
Uses exclamations, such as "Oh-oh!"
Tries to imitate words
********
Example continued: "Ok, well based on the above list, I'm concerned about the language part. He doesn't respond to simple requests, doesn't use simple gestures, doesn't babble or use words, and he doesn't try to imitate words. It looks like he's not at the level of a 12 month old for speech. So yeah, it looks like there is a speech delay."
At this point, often doctors will suggest a "wait and see approach." Specifically what they will say is, "I see what you mean. Let's wait until his 2 year old appointment and we'll see if his speech is better then." They will often do this because they don't want to needlessly scare parents if there is nothing wrong with the child.
"While I personally appreciated my pediatrician's reassurances, in hindsight I do feel like it wasted valuable time. I should have just called EI myself." - Karen, Mom to Lily, age 30 months.
Am I a big fan of EI? Sure, they are great. But I'm more of a fan of taking some sort of action, rather than just worrying and waiting. That can include EI, working with your child one-on-one (1:1) at home, hiring someone to work with your child, reading up to see what other parents are doing for their kids, or all of the above.
For info on how to help your child at home, see the section: "Looking for ways to help my child at home."
Tuesday, February 23, 2010
Tuesday, February 16, 2010
Looking for a medical diagnosis
"I think there is something wrong with my child, but our pediatrician keeps saying let's wait until he's 2. I don't want to wait..."
-Mary, Mom to Gage, age 17 months
If you are looking for answers by doctors, evaluations by doctors, and a potential diagnosis by a doctor, this section is for you.
Your child's pediatrician might be able to provide the official evaluation to determine if your child has a delay, and provide a diagnosis.
However, most do not. Instead, most pediatricians will refer you to a specialist to provide the evaluation and diagnosis. This has been a confusing point for parents, especially if the pediatrician pulls out an official looking form and starts asking questions. That form is referred to as a "screening tool," and it isn't the same as an official evaluation.
Here are some FAQ's about getting a diagnosis:
1. Who can provide the official evaluation?
It's often a developmental pediatrician, or a pediatric neurologist. Sometimes a pediatric psychologist can do it.
2. How do I get a referral to a specialist?
Ask your child's pediatrician for a "referral for an evaluation." It may help to find out ahead of time:
-whose recommended in your community
-if your insurance will cover it
You may find that your insurance will cover the evaluation by only one developmental pediatrician in town, and that the other developmental pediatricians aren't covered. That would be helpful information to know prior to requesting the referral.
3. Will I have to wait long to see the specialist?
It depends on the waiting list for that doctor. Some parents wait two weeks, and some wait 6 months or more. If you live within a reasonable distance from the specialist, it helps to let the specialist's office know that you are willing to be called on a moment's notice for any sick cancellations. This has been effective for many parents. One family facing an 8 month wait list was called within a week due to a cancellation.
4. What does the evaluation day look like?
Usually you fill out a packet of paperwork prior to your arrival. You should ask the specialist's office what they want you to bring, such as any screening tool results, or other records from your pediatrician. At the evaluation, the professional will observe your child, speak to your child, and spend time talking with you also.
The specialist may need further testing before making a conclusion, such as bloodwork, or a medical test like an MRI, but that is done on a case by case basis. (My son has never had an MRI or EEG).
5. I'm still trying to decide if a diagnosis is even worth it. Why label my child?
You don't have to pursue a diagnosis. It's up to the individual family, and it's such a sensitive, personal issue.
6. What is the difference between a medical diagnosis and an educational diagnosis?
A medical diagnosis is one that is given by a person in the medical field, such as a developmental pediatrician.
An educational diagnosis is one that is given by the school district for school related purposes.
-Mary, Mom to Gage, age 17 months
If you are looking for answers by doctors, evaluations by doctors, and a potential diagnosis by a doctor, this section is for you.
Your child's pediatrician might be able to provide the official evaluation to determine if your child has a delay, and provide a diagnosis.
However, most do not. Instead, most pediatricians will refer you to a specialist to provide the evaluation and diagnosis. This has been a confusing point for parents, especially if the pediatrician pulls out an official looking form and starts asking questions. That form is referred to as a "screening tool," and it isn't the same as an official evaluation.
Here are some FAQ's about getting a diagnosis:
1. Who can provide the official evaluation?
It's often a developmental pediatrician, or a pediatric neurologist. Sometimes a pediatric psychologist can do it.
2. How do I get a referral to a specialist?
Ask your child's pediatrician for a "referral for an evaluation." It may help to find out ahead of time:
-whose recommended in your community
-if your insurance will cover it
You may find that your insurance will cover the evaluation by only one developmental pediatrician in town, and that the other developmental pediatricians aren't covered. That would be helpful information to know prior to requesting the referral.
3. Will I have to wait long to see the specialist?
It depends on the waiting list for that doctor. Some parents wait two weeks, and some wait 6 months or more. If you live within a reasonable distance from the specialist, it helps to let the specialist's office know that you are willing to be called on a moment's notice for any sick cancellations. This has been effective for many parents. One family facing an 8 month wait list was called within a week due to a cancellation.
4. What does the evaluation day look like?
Usually you fill out a packet of paperwork prior to your arrival. You should ask the specialist's office what they want you to bring, such as any screening tool results, or other records from your pediatrician. At the evaluation, the professional will observe your child, speak to your child, and spend time talking with you also.
The specialist may need further testing before making a conclusion, such as bloodwork, or a medical test like an MRI, but that is done on a case by case basis. (My son has never had an MRI or EEG).
5. I'm still trying to decide if a diagnosis is even worth it. Why label my child?
You don't have to pursue a diagnosis. It's up to the individual family, and it's such a sensitive, personal issue.
6. What is the difference between a medical diagnosis and an educational diagnosis?
A medical diagnosis is one that is given by a person in the medical field, such as a developmental pediatrician.
An educational diagnosis is one that is given by the school district for school related purposes.
Looking for helpful local info
When I first heard about a Parent Support Group, my response was: "thanks but no thanks. My son needs help, not me. I don't need a box of tissues."
What I didn't realize is that the Parent Support Group is a gold mine of local information. Here's some of the info I found out by attending a group meeting:
1. What local therapists are good, and which ones to avoid
2. Which schools/teachers are most effective
3. Further insurance coverage I didn't even know I had
Here's how you can find your local support groups:
1. Contacting Early Intervention
2. Checking yahoo groups
3. Contact the special needs director for your school district
When you call, you want to keep it really simple. In the beginning, I really struggled with condensing what I told people about my son and what I was looking for. So in case you are in that spot too, here is a sample script:
"Hi, my name is _____ and I'm a Mom to a small child with delays. I just have one specific question for you: I would like to connect with other parents of special needs kids. Do you have any info on parent support groups in the area? or playgroups? Any direction you can give me would be helpful."
What I didn't realize is that the Parent Support Group is a gold mine of local information. Here's some of the info I found out by attending a group meeting:
1. What local therapists are good, and which ones to avoid
2. Which schools/teachers are most effective
3. Further insurance coverage I didn't even know I had
Here's how you can find your local support groups:
1. Contacting Early Intervention
2. Checking yahoo groups
3. Contact the special needs director for your school district
When you call, you want to keep it really simple. In the beginning, I really struggled with condensing what I told people about my son and what I was looking for. So in case you are in that spot too, here is a sample script:
"Hi, my name is _____ and I'm a Mom to a small child with delays. I just have one specific question for you: I would like to connect with other parents of special needs kids. Do you have any info on parent support groups in the area? or playgroups? Any direction you can give me would be helpful."
Saturday, February 13, 2010
Looking for help from Early Intervention
Frequently Asked Questions by Parents about the Early Intervention Program for kids ages 0-3 years (up to age 36 months).
1. What is Early Intervention?
Early Intervention (EI) is a United States program to help children age 0-36 months with any developmental delays, including speech delay. Each state has their own name for their EI Program. Please see the "State" section for your state's link. You don't need a medical diagnosis in order to contact EI. Many states allow the parents to refer their own child. You don't necessarily need a doctor referral to start the process of talking to EI.
2. How do I obtain Early Intervention? What is the process to get in? Is it free?
It depends on your state. But for the most part, you DO NOT NEED A DOC REFERRAL. You simply call them, provide basic info, and they send you a packet. After you fill out their paperwork, you and your child will meet with their evaluation team. If they decide at the evaluation that your child has a delay, you will be invited to join the program. And yes, Early Intervention is provided at no cost to you.
3. Is there a doctor in that evaluation team?
No, not usually. The initial team consists of a speech therapist (SLP), a physical therapist (PT) or occupational therapist (OT) or both, and someone to take notes and follow-up, such as a case manager.
Once you see their initial evaluation team, and get into their system, you can request to see a developmental doc. You would want to use their key lingo, such as "I'd like you to refer me to your specialty team." They are not required to provide it for you, but remember the motto: it's always worth politely asking. The worst thing that can happen is they say no.
4. How does Early Intervention determine if there is a delay? What does the evaluation look like?
They play nicely with your child while you talk to them, usually in the same room. They ask you specific, targeted questions, and observe your child, to see if she/he can do age appropriate skills across certain areas. They usually have a standard developmental test for each area that they are looking at, and comparing it to your child's development, all on paper. They may say a few things to each other about your child, but mostly they are focused on interacting with your child, talking to you, and collecting info.
5. How much does the delay need to be? If my child is just a couple months behind, will she still get in?
It depends on your state. Some states have a 50% delay required to get in. So in that case, a child who has a speech delay would need to be talking at a level that his half his/her age. Example: a 24 month old boy isn't talking, except for two words. The EI team determines that he's at a 12 month old level for speech. He's accepted into the program.
Some states have a 25% delay to get in. So for example, an 18 month old boy whose not talking would be accepted into the program. His cut-off would be speaking at a 12 month old level or less.
6. Other than knowing for sure if my child has a delay, what does Early Intervention specifically do for me?
Therapy. One Mom put it best: "If I knew how to fix it, I would have done it by now. I need help...he needs help. We need that specialist to work 1:1 with my child to help him overcome his delays. Therapy has been wonderful."
Some families receive just speech therapy, but it depends on the delay. Some kids are offered speech, occupational, and physical therapies.
7. What if I don't want therapy?
You don't have to take it. But I'd give it a try.
8. Is it intense? Does my child have to sit in a chair? He's so little.
Most therapists are excellent, and make it really fun for the child. Ask if you can sit in on the session to observe it. They often welcome parent involvement so you can learn techniques to continue the therapy at home.
1. What is Early Intervention?
Early Intervention (EI) is a United States program to help children age 0-36 months with any developmental delays, including speech delay. Each state has their own name for their EI Program. Please see the "State" section for your state's link. You don't need a medical diagnosis in order to contact EI. Many states allow the parents to refer their own child. You don't necessarily need a doctor referral to start the process of talking to EI.
2. How do I obtain Early Intervention? What is the process to get in? Is it free?
It depends on your state. But for the most part, you DO NOT NEED A DOC REFERRAL. You simply call them, provide basic info, and they send you a packet. After you fill out their paperwork, you and your child will meet with their evaluation team. If they decide at the evaluation that your child has a delay, you will be invited to join the program. And yes, Early Intervention is provided at no cost to you.
3. Is there a doctor in that evaluation team?
No, not usually. The initial team consists of a speech therapist (SLP), a physical therapist (PT) or occupational therapist (OT) or both, and someone to take notes and follow-up, such as a case manager.
Once you see their initial evaluation team, and get into their system, you can request to see a developmental doc. You would want to use their key lingo, such as "I'd like you to refer me to your specialty team." They are not required to provide it for you, but remember the motto: it's always worth politely asking. The worst thing that can happen is they say no.
4. How does Early Intervention determine if there is a delay? What does the evaluation look like?
They play nicely with your child while you talk to them, usually in the same room. They ask you specific, targeted questions, and observe your child, to see if she/he can do age appropriate skills across certain areas. They usually have a standard developmental test for each area that they are looking at, and comparing it to your child's development, all on paper. They may say a few things to each other about your child, but mostly they are focused on interacting with your child, talking to you, and collecting info.
5. How much does the delay need to be? If my child is just a couple months behind, will she still get in?
It depends on your state. Some states have a 50% delay required to get in. So in that case, a child who has a speech delay would need to be talking at a level that his half his/her age. Example: a 24 month old boy isn't talking, except for two words. The EI team determines that he's at a 12 month old level for speech. He's accepted into the program.
Some states have a 25% delay to get in. So for example, an 18 month old boy whose not talking would be accepted into the program. His cut-off would be speaking at a 12 month old level or less.
6. Other than knowing for sure if my child has a delay, what does Early Intervention specifically do for me?
Therapy. One Mom put it best: "If I knew how to fix it, I would have done it by now. I need help...he needs help. We need that specialist to work 1:1 with my child to help him overcome his delays. Therapy has been wonderful."
Some families receive just speech therapy, but it depends on the delay. Some kids are offered speech, occupational, and physical therapies.
7. What if I don't want therapy?
You don't have to take it. But I'd give it a try.
8. Is it intense? Does my child have to sit in a chair? He's so little.
Most therapists are excellent, and make it really fun for the child. Ask if you can sit in on the session to observe it. They often welcome parent involvement so you can learn techniques to continue the therapy at home.
Friday, February 12, 2010
Looking for my state's Early Intervention Program
If you live in the United States, and your child is under the age of 3 years (36 months), you can get help from your state Early Intervention Program. That help is typically in the form of evaluations and therapy. Please see my FAQ section for more info.
This list is updated as of Feb 2010:
Alabama: http://www.rehab.state.al.us/Home/default.aspx?url=/Home/Services/AEIS/Main
Alaska: http://health.hss.state.ak.us/ocs/InfantLearning/default.htm
Arizona: https://www.azdes.gov/AZEip/
Arkansas: http://www.arkansas.gov/dhs/ddds/FirstConn/index.html
California: http://www.dds.ca.gov/EarlyStart.home.cfm is the main site. It hasn't been working. Try:
http://www.php.com/services/early-intervention-infants-toddlers-0-3
Colorado: http://www.eicolorado.org/
Connecticut: http://www.birth23.org/
Delaware: http://www.dhss.delaware.gov/dhss/dms/epqc/birth3/directry.html
DC: http://www.osse.dc.gov/seo/cwp/view,a,1224,q,562131.asp
Florida: http://www.cms-kids.com/families/early_steps/early_steps.html
Georgia: http://health.state.ga.us/programs/bcw/index.asp
Hawaii: http://hawaii.gov/health/family-child-health/family-child-health/eis/index.html
Idaho: http://healthandwelfare.idaho.gov/default.aspx?TabId=78
Illinois: http://www.dhs.state.il.us/page.aspx?item=32009
Indiana: http://www.in.gov/fssa/ddrs/2633.htm
Iowa: http://www.earlyaccessiowa.org/
Kansas: http://kdheks.gov/cds/index.html
Kentucky: http://chfs.ky.gov/dph/firststeps.htm
Louisiana: http://www.dhh.louisiana.gov
/offices/?ID=334
Maine: http://www.maine.gov/education/speced/cds/index.html
Maryland: http://ei.mdecgateway.org/earlyinterventionsystem
Massachusetts: http://www.eiplp.org/
Michigan: http://www.1800earlyon.org/
Minnesota: http://www.health.state.mn.us/divs/fh/mcshn/directory/
Mississippi: http://www.msdh.state.ms.us/msdhsite/index.cfm/41,0,74,html
Missouri: http://dese.mo.gov/divspeced/FirstSteps/index.html
Montana: http://www.dphhs.mt.gov/dsd/homebasedservicestofamilies/earlyinterventionservices.shtml
Nebraska: http://edn.ne.gov/
Nevada: http://health.nv.gov/BEIS.htm
New Hampshire: http://www.dhhs.nh.gov/DHHS/BDS/family-early-support.htm
New Jersey: http://nj.gov/health/fhs/eis/index.shtml
New Mexico: http://www.nmhealth.org/ddsd/NMFIT/FITIndex.htm
New York: http://www.health.state.ny.us/community/infants_children/early_intervention/
North Carolina: http://www.ncei.org/ei/itp.html
North Dakota: http://www.nd.gov/dhs/services/disabilities/earlyintervention/parent-info/right-track.html
Ohio: http://www.ohiohelpmegrow.org
Oklahoma: http://sde.state.ok.us/Curriculum/SpecEd/SoonerStart.html
Oregon: http://www.ode.state.or.us/search/results/?id=252
Pennsylvania: http://www.dpw.state.pa.us/About/OCDEL/003676718.htm
Rhode Island: http://www.dhs.ri.gov/ChildrenwithSpecialNeeds/EarlyInterventionProgram/tabid/839/Default.aspx
South Carolina: http://www.scfirststeps.org/babynet.html
South Dakota: http://doe.sd.gov/oess/Birthto3/index.asp
Tennessee: http://www.tn.gov/education/teis/
Texas: http://www.dars.state.tx.us/ecis/index.shtml
Utah: http://www.utahbabywatch.org/
Vermont: http://dcf.vermont.gov/cdd/cis/IDEA_Part_C_early_intervention
Virginia: http://www.infantva.org/
Washington: http://www.dshs.wa.gov/iteip/
West Virginia: http://www.wvdhhr.org/birth23/
Wisconsin: http://dhs.wisconsin.gov/bdds/birthto3/
Wyoming: http://wdh.state.wy.us/ddd/earlychildhood/index.html
This list is updated as of Feb 2010:
Alabama: http://www.rehab.state.al.us/Home/default.aspx?url=/Home/Services/AEIS/Main
Alaska: http://health.hss.state.ak.us/ocs/InfantLearning/default.htm
Arizona: https://www.azdes.gov/AZEip/
Arkansas: http://www.arkansas.gov/dhs/ddds/FirstConn/index.html
California: http://www.dds.ca.gov/EarlyStart.home.cfm is the main site. It hasn't been working. Try:
http://www.php.com/services/early-intervention-infants-toddlers-0-3
Colorado: http://www.eicolorado.org/
Connecticut: http://www.birth23.org/
Delaware: http://www.dhss.delaware.gov/dhss/dms/epqc/birth3/directry.html
DC: http://www.osse.dc.gov/seo/cwp/view,a,1224,q,562131.asp
Florida: http://www.cms-kids.com/families/early_steps/early_steps.html
Georgia: http://health.state.ga.us/programs/bcw/index.asp
Hawaii: http://hawaii.gov/health/family-child-health/family-child-health/eis/index.html
Idaho: http://healthandwelfare.idaho.gov/default.aspx?TabId=78
Illinois: http://www.dhs.state.il.us/page.aspx?item=32009
Indiana: http://www.in.gov/fssa/ddrs/2633.htm
Iowa: http://www.earlyaccessiowa.org/
Kansas: http://kdheks.gov/cds/index.html
Kentucky: http://chfs.ky.gov/dph/firststeps.htm
Louisiana: http://www.dhh.louisiana.gov
/offices/?ID=334
Maine: http://www.maine.gov/education/speced/cds/index.html
Maryland: http://ei.mdecgateway.org/earlyinterventionsystem
Massachusetts: http://www.eiplp.org/
Michigan: http://www.1800earlyon.org/
Minnesota: http://www.health.state.mn.us/divs/fh/mcshn/directory/
Mississippi: http://www.msdh.state.ms.us/msdhsite/index.cfm/41,0,74,html
Missouri: http://dese.mo.gov/divspeced/FirstSteps/index.html
Montana: http://www.dphhs.mt.gov/dsd/homebasedservicestofamilies/earlyinterventionservices.shtml
Nebraska: http://edn.ne.gov/
Nevada: http://health.nv.gov/BEIS.htm
New Hampshire: http://www.dhhs.nh.gov/DHHS/BDS/family-early-support.htm
New Jersey: http://nj.gov/health/fhs/eis/index.shtml
New Mexico: http://www.nmhealth.org/ddsd/NMFIT/FITIndex.htm
New York: http://www.health.state.ny.us/community/infants_children/early_intervention/
North Carolina: http://www.ncei.org/ei/itp.html
North Dakota: http://www.nd.gov/dhs/services/disabilities/earlyintervention/parent-info/right-track.html
Ohio: http://www.ohiohelpmegrow.org
Oklahoma: http://sde.state.ok.us/Curriculum/SpecEd/SoonerStart.html
Oregon: http://www.ode.state.or.us/search/results/?id=252
Pennsylvania: http://www.dpw.state.pa.us/About/OCDEL/003676718.htm
Rhode Island: http://www.dhs.ri.gov/ChildrenwithSpecialNeeds/EarlyInterventionProgram/tabid/839/Default.aspx
South Carolina: http://www.scfirststeps.org/babynet.html
South Dakota: http://doe.sd.gov/oess/Birthto3/index.asp
Tennessee: http://www.tn.gov/education/teis/
Texas: http://www.dars.state.tx.us/ecis/index.shtml
Utah: http://www.utahbabywatch.org/
Vermont: http://dcf.vermont.gov/cdd/cis/IDEA_Part_C_early_intervention
Virginia: http://www.infantva.org/
Washington: http://www.dshs.wa.gov/iteip/
West Virginia: http://www.wvdhhr.org/birth23/
Wisconsin: http://dhs.wisconsin.gov/bdds/birthto3/
Wyoming: http://wdh.state.wy.us/ddd/earlychildhood/index.html
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