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Special Needs
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SN FAQ: Delayed Development & Early Intervention
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Welcome to the Special Needs Frequently Asked Question thread! Please feel free to also create your own post in a new thread if you need more information or support. If you do post your own thread, we want as many parents as possible in your similar situation to 'see' your question. Please be specific and include the potential diagnosis or procedure in your post title.
I am worried that my child is behind developmentally.
Why did you feel your child was behind developmentally and at what age did you take some action?
If you decided to call early intervention, what was the assesment like?
What services did your child qualify for? Did you agree with the assessment?
How soon did you get services and what did they cost? (Please mention your state and what the early intervention program is called there.)
Do you have any other advice for parents worrying about their child being delayed?
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Re: SN FAQ: Delayed Development & Early Intervention
Why did you feel your child was behind developmentally and at what age did you take some action? At 18 months he was not yet walking on his own. We were told by his pedi to take him to a physical therapist and from there, they told us to call EI. He was also not talking at that time, but I did not worry about that until a few months later (his older brother was a late talker as well, but not this late). We are two weeks out from his 2nd birthday and he still does not speak. He babbles a bit, shrieks, and hums. He used to wiggle his fingers (as if playing the piano) and (still does) arm flap a lot. He hyper-focuses on things and it is difficult to get his attention. He rarely responds to verbal commands, or his name being called.
If you decided to call early intervention, what was the assesment like? My husband took our son to the assessment, so I'm not the best to comment on this. I do know it took about 2 hours.
What services did your child qualify for? Did you agree with the assessment? My son was labeled "at risk for autism" and they offered for a person to come once a week or every other week. We chose to have her come to work with him every week. We alternate her seeing him at our home and at daycare. Yes, I agreed with the assessment. Working in a daycare, I knew he was not at the same level as other children his age and exhibited some different behaviors. A speech pathologist will also be added into the mix starting in a couple of weeks. Although our initial concern was physical (the not walking), he has made a lot of progress and while he still is not quite on the same level as others, we do not have huge concerns in that area. Thinking low muscle tone.
How soon did you get services and what did they cost? It only took 2-3 weeks. There was no cost. We are in Oklahoma and our program is called "Sooner Start" here.
Do you have any other advice for parents worrying about their child being delayed? Not at this time. We are still in the early stages of everything.
Cam 6.6.10 - Autism, Global Developmental Delay, Mixed Receptive/Expressive Communication Disorder
Do you have any other advice for parents worrying about their child being delayed?
Contacting EI can't hurt. I would also like to note that even if your child has a delay and could benefit from therapy they might not qualify for EI. Here a child must have a 40% delay in one area or 25% delays in two or more areas to qualify for services. Some medical diagnoses are automatic qualifiers like hearing loss, Down's Syndrome, etc.
I am worried that my child is behind developmentally. If you have any concerns about your child's development, speak with your pediatrician. If you don't get the answers you need, make a call to early intervention (EI). You can't ever be too proactive about your child.
Why did you feel your child was behind developmentally and at what age did you take some action? My pedi expressed concern at my 12/15 month appointment from my son's lack of words. We decided to wait it out until 18 months to see where he was at then, since I assumed he was behind at those ages because he walked so early and was so far ahead in gross motor skills. At 18 months, he only had 8 words (a few were only animal sounds) so we started the process with EI.
If you decided to call early intervention, what was the assesment like? A team of specialists came to my house. They ran a series of tests on his fine motor/gross motor/language skills.
What services did your child qualify for? Did you agree with the assessment? I did not fully agree with the assessment. They initially stated his receptive language was more severely delayed than his expressive language. They recommended speech therapy twice a week for 45 minutes at a time. After about 2 months in therapy his therapists found that his receptive language was at a "normal" level, but he had sensory processing disorder which made him uncooperative for the testing/therapy, not that he didnt understand what people were asking of him. I am now 100% on board with his therapists' assessment of him, which is that he has childhood apraxia of speech and sensory processing disorder. Since his initial evaluation, he has also started OT for his sensory issues as well. That has really helped his language take off since he's able to be a more active participant in his speech therapy sessions.
How soon did you get services and what did they cost? (Please mention your state and what the early intervention program is called there.) RI, early intervention program is called early intervention. Completely free of cost. My son is even getting a weighted vest for free. Your insurance provider is billed for services and what your insurance wont cover the state does regardless of income level.
Do you have any other advice for parents worrying about their child being delayed? If you feel there is a problem, call sooner than later. If there's not a problem, you get reassurance that your child is developing typically. If there is, you can get your child the services they need. It's really improved the quality of both our lives, both mine and my child's.
Why did you feel your child was behind developmentally and at what age did you take some action?
I felt that my DS was behind because he was not meeting some projected milestones (in my books and with comparison to others of his age) when he was 18 months old. He had a pretty decent vocabulary at 15 months but that was also when he started walking. It was like he "lost" words and I mentioned it to his pediatrician at his well visit. His pedi said if he wasn't combining words at 21 months to get a speech and hearing evaluation. He never mentioned Early Intervention.
If you decided to call early intervention, what was the assessment like?
So at 22 months, DS still wasn't speaking well. He only labeled things when prompted and didn't initiate speech. I called the private speech therapist my pedi recommended but they didn't take ANY insurance. They recommended I call Early Intervention. I did and the process started immediately. My son's assessment was just days before he turned 23 months old.
I thought the assessment was tough. Plus he was in a cranky mood, which affected how he performed. It ended up being a good thing, because he qualified for therapy in several areas?33% delay in social/emotional development, 25% delay in cognitive ability and 25% delay in communication. (Note: he wasn't as behind as evaluated in the social/emotional/cognitive areas as assessed but was in speech.) The evalators also pressed for me to take him to a developmental pediatrician due to ASD concerns. (This was July 2011... I made an appointment for October 2011, which was the earliest they could get us in.)
What services did your child qualify for? Did you agree with the assessment?
Initially DS qualified for DI 2x per week ? developmental intervention with a special ed teacher for the cognitive and social/emotional aspects ? and Speech Therapy 1x per week. I accepted the services and was unsure of the assessment. Therapy began the week he turned 2 (August 2011). His therapists both assured me that while DS DID have an expressive language delay, his receptive and cognitive ability was actually above age level. Within a month, I'd say I saw a big change in both his behavior (no more tantrums because he was communicating) and I felt the assessment was skewed.
After his appointment with the developmental pediatrician at 27 months, I requested a PT evaluation as the pedi noted gross motor delays (he was not jumping). And he also began to show sensory issues. He qualified for both PT and OT (for sensory only, not fine motor) at his 6 month review and services began late January 2012. He does have some low tone and core strength issues but they are relatively mild.
We did take him for a follow-up hearing test/ENT visit in February and found out that he had mild hearing loss from fluid that wasn't going away. He got ear tubes on March 1st. After that his language just exploded. Like in two weeks. I felt guilty that I didn't do tubes sooner but his prior test was not as bad.
After 9 months in EI, he is close to or at age level (now 33 months) for expressive language. He is testing ahead in receptive language. His speech therapist primarily works on articulation now (drops consonants) as he speaks in long sentences. And when we began, he didn't even combine words or spontaneously use words to ask for things. While he still cannot completely jump, he is doing well on stairs and is getting much stronger. OT has been very helpful with his sensory needs and he is better able to self regulate.
How soon did you get services and what did they cost? (Please mention your state and what the early intervention program is called there.)
We got services basically two months after my initial call to EI. There is a set timeframe by law and it has to be 3 weeks from your first call to the evaluation. And then, I believe, two weeks to the IFSP. Then 4 weeks from the IFSP to the start of services. Ours moved faster than that (2 weeks). I am in New Jersey and the program is called "Early Intervention".
There is a cost share in NJ based on taxable income. Our cost is very low (lower than a copay) and DS does get much more services than most. I feel somewhat guilty at times because his needs seem less than others who get less services. DS gets DI 2x per week, ST 1x per week, OT 1x per week and PT 2x per month.
Do you have any other advice for parents worrying about their child being delayed?
My main advice is to be an advocate and follow your instincts. Don't rush to conclusions but don't think "oh I heard so-and-so had a speech explosion at 2" and wait too long. If your LO seems to have delays between 18 and 24 months, have an evaluation. It's free and the earlier services begin, the better. Also, a developmental delay does not always mean Autism. I really thought my DS might be on the spectrum, but he is not. I'm not saying he is completely typical as he has sensory issues that, for an older child, might dx with SPD (at his age, we don't know... he may outgrow some things). So don't put your head in the sand and don't leap to conclusions. Just follow up and give your child the help he/she needs.
Bronx Zoo: Summer 2013
To read my blog, click on the giraffe pic below!
Why did you feel your child was behind developmentally and at what age did you take some action?
Our situation is a bit different. Nate was born with genetic micro-deletions and he has a brain abnormality that has a "high probability of developmental delay". He also had vision issues(nystagmus and strabismus) as well as being hard of hearing. His brain diagnosis alone qualified him for services, but we still went through the formal process of an overall assessment at 2 months old.
If you decided to call early intervention, what was the assesment like?
We were given the phone number for early intervention with our discharge papers from the NICU. I think I called as sson as we got home late December and our assessment appointment was set up for the end of January. Before the appointment our service coordinator called me on the phone for particulars about Nate's diagnosis and what sort of "goals" we had for him.
For the assessment we went to the office of the early intervention program and first met with our service coordinator for paperwork. We were then lead into a large conference room that had about 8-10 people in it with a blanket for Nate to lay on in the front of the room. I was not prepared for this type of crowd. The people in the room that I can remember were: our service coordinator, her boss, a developmental pediatrician (we googled him later), a physical therapist, occupational therapist and a speech therapist. The developmental pediatrician asked the questions and the different therapists played with Nate on the floor. Since he was so young, there really weren't any particular assessment forms they used. They wanted us to wait a couple of months to get an assessment for OT based feeding therapy. He has really poor tone around his mouth.
What services did your child qualify for? Did you agree with the assessment?
Nate intially just qualified for physical therapy 1xWeek for 30 min. We did a seperate assemsnt for OT/feeding in March and he qualified for 1xWeek at 30 minutes. The other EI services that he was actually eligible for, I found out about later and had to ask for them specifically which really ticked me off.
Over the next few months, I found out that he should have qualified for vision services, teacher of the deaf, and a special educator. Other parents in my state who have children with hearing aids automatically get speech services. I waited until 18 months to have Nate assessed for those because I heard through the grapevine that I would have more luck if I waited until he was older. Also, I had found the EI services through our local school for the deaf (our vision therapist told me-I also found her on my own) that Nate started at 8 months old. He was being seen by an SLP there. That was another reason I waited for a speech assessment.
How soon did you get services and what did they cost?
In Maryland, early intervention is called "Infants and Toddlers". Services are free. In my experience they were not very forthcoming nor proactive about services Nate SHOULD has been getting all along. When I called about vision services our service coodinator said "hmmm, I have never heard of that, let me ask my supervisor and get back to you". I called Maryland School for the Deaf on my own and they did all the paperwork for EI.
I think our service started about a month after our initial EI assessment. I was told by others to learn what the timeline was for getting services in my state. If they had 30 days to set up the first appointment, you can bet they will wait until day 29 do make arrangements. I would always try and call a week before the thirty days was up to rmind my service coordinator that she was running out of time. I also had a big delay in getting speech services. They lost the paperwork when I called after thirty days, so they process was pushed even further back. We were assessed for speech on June 25th and service did not get started until the beginning of Sept.
Do you have any other advice for parents worrying about their child being delayed?
If you are a first time mom and haven't been around children before try and get to some playdates with other children your child's age or discuss what you are seeing with your childcare provider. They are the best people to tell you if your child seems behind. People on the internet (such as The Bump) tend to over-brag about their child's abilities and may not be accurate reporters. Keep in mind that for every one parent saying their child does 'xyz' there are about 10 other parents NOT saying that their child isn't doing that yet. They are sitting behind their screen thinking their kid is delayed, when in actuality, their kid is average.
At the same time, you have to trust your gut. If something seems off then it may be good to investigate. Talk to your pedi and if you don't feel better about it after talking to them, you can always call early intervention. Most states will let you self-refer.
Also, know that you are the best advocate for your child. Learn as much as you can about what services are available and the timelines for those services. Remember that the squeaky wheel gets the oil. YOu can probably be a sweaky as you want until they actually get into schoool Then, you have to pick you battles.
Nate's therapists and doctors have been the best source of inside information for me. Our neurologist asked us why we weren't getting vision services, our vision therapist asked us why we weren't getting school of the deaf services and our physical therapist hooked us up with a therapist trained in Feldenkrais therapy (a movement therapy). People always like to be helpful. Be ready to ask the questions.