Another day another therapy session. Isn’t it weird how this is just a normal part of your life? I remember when we came home from the hospital I cried. It was not the coming home I had envisioned. One of the reasons I was so sad was that I knew with Noah coming home it meant that countless therapists would also need to cross our threshold. This was something I didn’t think would be necessary in our new adventure.
Maximizing a child’s potential has always been one of my goals as a pediatrician. Whether it be by keeping them healthy, getting them resources or just educating their parents. I’m a fan of early childhood intervention, but I like early childhood intervention that actually does some intervening (is that a word?). As a pediatrician in our booming city, I have experienced the frustrations of parents who were not provided the services they were promised.
There is nothing
Parents have told me about their therapists who only have time to come once a month because there are so many kids that need help in their community. Or they end up getting the coordinator doing the majority of intervention because they actually have the time.
The coordinator is not a therapist!
They may have child development training, but they have not done their higher education in physical, occupational or speech therapy.
Some early childhood intervention programs are excellent, especially the ones in suburbs. However I was not quite getting the response I wanted early on. It was taking weeks for them to come evaluate Noah, and I needed to get started as soon as possible. It was just something that I needed to do. So we ventured outside of the standard intervention that is initially recommended, and began private developmental therapy – which has been great!
Reasons to switch
- Your child is 6 months or older and the therapists can’t come more than once per month.
- You are not seeing your child make progress, or you notice they are not correcting the bad habits a child with Down syndrome creates on their own such a not sitting up straight.
- You are requesting evaluations in speech, occupational, or physical therapy and someone not trained in these fields is telling you that your child does not need those services yet or at all.
- Services stop because they are doing so well. (See the recent goals post for why this is a bad idea)
Does your theprist have all of the tools your child needs?
Reasons Not to switch
- You love your therapists and they are awesome!
- You are seeing great progress in your child and are happy with how things are going.
- You have other children and making multiple trips per week to a center is not the best scenario for you.
- Your insurance does not cover it, or the costs you pay out of pockets will be a burden to your family.
- There are only government provided resources in your area
If 3-5 apply to you, but 1 and 2 do not, do not fear. The point of therapy is to teach you what you are supposed to do at home. If you are not getting taught this, there are books and videos you can get to become your child’s best therapist. Check out our resource page to see some great starting points for gross motor and fine motor skills. Those books will walk you through what I see our therapists doing every day. You can also check out a lot of our videos for some ideas of what we are working on. It may be hard work on your part, but I am willing to bet you will find it worth the effort.
Options For Intervention
There are 3 options when you first start looking for intervention:
- Government provided in-home therapy
- Private in-home therapy
- Private center-based therapy
The majority will take your insurance, and some will even take Medicaid. After I was told it would be about 2 months before our government provided resource would come look at Noah, we looked at private in-home therapy. This is something to look at if you need to stay at home due to other children. We tried one and I was not impressed so I went to a place I trusted rather than searching through the other home-based therapy providers I knew nothing about. I have referred countless children to Baylor Our Children’s House, and I love what they offer to children and the progress I have seen children make.
The earlier you start early childhood services, the better.
We met our first occupational therapist (Ashley) here. She was going to do both physical and occupational therapy for us initially because they are so intertwined when your child is 3 weeks old. Once Noah started getting good head control, begin to develop his core, and was putting some weight on his arms be decided it was time to venture into separating his therapies. We spent a brief period in speech therapy there but will likely use another resource (Lynn Campbell with Campbell and Foster) based on a number of excellent recommendations we have received as Noah gets older.
If you are just starting the therapy journey I want you to know that you have options. You are most likely told only about one, so I am here to do my little part with education.
I recommend starting with number 1 and seeing how it goes. If that goes poorly move to 2 or 3 based on what you are looking for. The best way to find good options is to ask your new friends in your Down syndrome group if they are going outside of the standard. Hopefully your pediatrician also knows about certain resources in the area as well.
How do you feel your child’s therapists are doing? Did you know that you had other options?
People should also be aware that once a child turns three years old the school district will provide PT, OT and Speech. But there is a HUGE difference between clinical therapy and educational therapy; especially for speech. They have different approaches as well as different goals. As a mother with three other children who have received Early Intervention Services, I highly recommend doing both. My children made huge gains by receiving therapy both through the schools and through a private source.
Lisa, we totally agree with you. In fact the speech therapist we plan on using is a private therapist that has a lot of experience working with children born with Down syndrome, and other “special needs.”
(She’s also on the Dallas Down Syndrome Guild board of directors!) 🙂
Have you been pretty happy with your children’s therapies? What sort of speech therapies have you guys done? We did the beckman oral motor exercises, and used a z-vibe. We also know people who have used the talk tools system, and have been very happy.
Hi,
This was a great post! I went through a bad situation with Early Intervention and the thing to know is be persistant! My daughter was born with Ds and I called EI right away. I met with her service coordinator within 3 weeks and physical therapy was coming here when my daughter was 1 month (and some weeks) old. My daughter’s pediatrician (also works at the Ds center in our area) said she wanted my LO to have speech therapy and occupational therapy, on top of her physical therapy by the time my LO was 9 months old. I contacted our service coordinator and she gave me a speech therapist (because we were having 2 hour long feeding sessions and I was pumping, in college, have 2 other LOs and tired all the time), that happened when my daughter was around 4 months old. Our service coordinator refused to give my daughter an occupational therapist. She wanted to give her a “teacher therapist” when she felt my daughter would need one. I talked it over with my daughters other therapists and my daughters doctor. Upon their advice I called our service coordinator back and we got into it over the phone, I told her I would provide her with a script from my daughter’s doctor stating that she needs OT also. The service coordinator said “I dont work for your daughters doctor! and I am not giving her OT right now” I said “No,You dont work for my daughter’s doctor, you work for the state, my taxes pay your salary, now my daughter needs OT and she will have it!” Sooo I called the service coordinator’s boss about a million times and left a bunch of messages and when she called me back I explained the situation to her. I explained that I did not feel like my daughters service coordinator had my LOs best interest at heart and that I no longer feel comfortable working with her regarding my daughter, that is not personal but I don’t appreciate the way she handled the whole situation and refused my daughter a service she needs. I got an OT therapist and a new service coordinator. My daughter gets her 1 year evaluation this week and I am nervous they are going to try to take services away from her because she is doing so well, but she is doing so well because she is awesome and also because she has been having therapy since she was 1 month old.
I dont mean to write so much but I wanted to explain that this is a great post because situations like ours really happens with EI and it is not fair. The story sounds like everything went so smoothly but this was over the course of 3 weeks, I kept calling and arguing with these people from EI and many times I felt so helpless and frustrated because my daughter needs these therapies and someone who only met her 1x could say if she needs them or not? Whereas her pediatrician,who sees her monthly if not more, says she needs these therapies. Even though it is hard, just dont give up, and as soon as EI starts giving a hard time contact a local facility that offers therapy to LOs because a lot time they have waiting lists (at least where we live they do), that way if no progress gets made with EI for a while, your LO can start therapy at an alternative therapy and continue with EI when the matter is resolved. Good luck to you all and again, this is a really great blog.
Nikki,
Thanks you for you GREAT comment! You should a lot like me. I’d be ringing the bosses phone off the hook if I were in your shoes! I’m sorry you had to go through all of that trouble, but why to hold your ground and fight for you kid-o. Many people would have just said done whatever they said. So way to go!
Also your little one sounds like our little Noah. If you go back to very start you’ll see he was doing therapies (and swallow studies!) at 3 weeks old! We didn’t start this blog until May so there isn’t much before May; however I did put up a few of the older speech therapies videos because I wanted people to know that the swallow studies weren’t a big deal. (I was nervous, but there was no reason to be. It was quick.) But our little guy is doing great also, in fact we are about to start going to his therapists 4 times a week! It seems like a lot, but we’ll do whatever we need to do to give Noah whatever he needs. If right now that means 4 times a week trips to the therapist, we’ll be there 4 times a week. 🙂
Lots of work, but that’s what we parents were build to do.
Thanks for the kinds words about our blog, we really appreciate that. The best thing you can do for us is share it with everyone you know, post it on Facebook, forums, etc…and hit that like button to the left of each post. 🙂
We are glad to be on this journey with you. Please continue to keep us posted! 🙂
We have somebody coming to the house to work with Anna, but is a center better the in home therapy? They are only coming every other week because they said her muscle tone isn’t as bad as other kids with DS. Does this sound normal? Would seeing her ever week benefit her more? Ugh it so hard to keep track and know what is right.
Thanks
How old is Anna? Ask your pediatrician what they think about your child’s tone to see if they agree. Every other week can definitely work if you feel like you are seeing good habits form and you are learning things to do with Anna on your own. A center is not necessarily better, it was just better for us. You could have amazing home therapists, and there can be horrible ones in a center. I personally think that motivated parents are the best therapists, so keep up the good work 🙂 If you are ever concerned about how she is doing ask for an assessment by one of the therapist, you can even request them to do one of the skills assessment tests to see if they are below average or not. Hope this was helpful.
I just found this blog from a post on pinterest.com and it is exactly what I need. I have been hungry for developmental stuff to give my 5 week old son the best chance to reach his full potential. I am so happy to have found this blog because my son is close enough to Noah for the information to be fresh and old enough for you to document and reflect upon it. Tomorrow is my first meeting with an occupational therapist and I have no idea what to expect but I am so excited to get started. I love the way you have laid out all the intervention options. I don’t know if intervention options 2 or 3 are available in my area but before now I didn’t even know to look. I am interested in information and resources to make sure my therapist is providing my son the best therapy possible and this looks like a great place for such information. I can’t wait to read your whole blog!
I have only read this, your birth story, and the resources post by your wife and I plan on catching up on all your posts and then hanging on your every word.
Make sure to check out http://www.down-syndrome.com for great information on development. I love that site and always find something new on it. I hope your meeting goes well with your OT. The fact that they are coming out now is way better than the answer we got, so you are off to a good start 🙂 Let me know if you have any specific questions, I would be happy to try to answer them. I am so glad that our site has been helpful to you.
Another fantastic post chalk full of information. We have ECI, but as you said, at times it is just the coordinator who provides all of the services. That is the case with us. We love our therapist, but my husband and I were/are really worried about Ellie communication and she has some sensory issues that were not being addressed. We still have ECI, but we have added in speech therapy and ABA therapy. Insurance will NOT pay for either one. Even after the necessary appeals and medical documents, insurance will not budge. Fortunately, my husband works for a great company. I encourage everyone to talk to Human Resources. My husband’s company offers the “Specialty Care for Children Assistance Plan” and we receive 80% reimbursement on speech and ABA. 🙂
Nice work Anna! My biggest frustration for the kids I have seen in ECI is speech therapy. It drives me nuts what some areas do for speech. I can’t tell you how many moms have told me “well they told me my child was too young for speech”, or “let’s just wait and see” I tell them to keep annoying their coordinator or whoever to get a speech evaluation and they can determine if their child needs the services or not. I am going to have to look into this speciality care stuff. Thanks for the info.
I found this site as I was searching for other parents who are hainvg difficulty getting ECI to provide quality services for their child-I found that many were. For over 8 months I have been trying to make ECI serve my child as they promised. However, I find that they have little commitment and even less knowledge. If they do bother to show up they have no real plan for therapy. My daughter has made great gains through my own research and work, but ECI has done absolutely NOTHING for her. I am frustrated b/c ECI is funded by our tax dollars. It is a travesty. Parents of special needs children should make this known so that in the future our tax dollars could be better utilized to serve children.
I know what quality therapy looks like-and ECI is NOT a model for providing quality therapy for children with special needs. I am a speech therapist with a Ph.D. and strong back ground in child development. I sought help for my daughter through ECI thinking that I could rely on this agency for OT and PT until my daughter turned 3. I tried 2 different ECI agencies in the Houston area. It has been a terrible experience for us. My frustration is added ti by the fact that since I am only working part time in order to have time to help my daughter, I have very limited funds. In addition, my health insurance does not currently provide coverage for her therapy. My assets are such that I do not qualify for medicaid. I am using my retirement account to pay for the small amount of therapy that I am able to secure for my daughter. As a single parent working part time as a speech therapist and full time as a mother to serve her special needs child; I am more than frustrated by the fact that ECI continues to fail families and is still funded through our tax dollars.
If you are having trouble with Early Intervention services, you should also contact your school district. Oftentimes, the school district will provide some services for birth to three. You also always have the option of opting out and having your private insurance cover the services and medicaid picking up the rest. Remember, almost every state has a medicaid program that is offered children with DS regardless of the parent’s income. You should also check with your attorney general for your state. Many times insurance companies reject services no matter what. But there are some states that have had lawsuits which force the insurance companies to provide. In our case, we were denied speech in Michigan when my oldest was 2. After a little research, we learned that there was a mandate by the state for insurance to cover speech at any age as long as the child had two speech diagnoses. Alex was both apraxic, expressive and receptive so after a nasty letter to BCBS we won.
Thanks for the tips!! Have you already gotten supplemental medicaid? There is like a 9 year waiting list here in Texas.
fabulous blog and very timely for us. After 4 non-returned phone calls to our speech therapist onver the summer we had our first private speech session last saturday. I’m easgerly awaiting our Talk Tools kit and can’t wait to actually do some therapy with Lauren to help her with food and speech. You’ve also just provided me with a kick to phone the physio who we’ve not met in a while.
You hit the nail on the head! Our daughter has ‘therapy’ with a coordinator at home once a week (when the coordinator actually shows up) We are starting PT at OCH of Baylor this week and I’m so excited for her to start getting the help she needs from an actual physical therapist!
I’d also suggest that one looks into Music Therapy. We treat many issues, see http://www.musictherapy.org for more information.
I was just going to say the same thing, Anita!
he makes that ball look so easy hey noah teach me how you do that lil man cuss i cant i fall off everytime
I know, right? He’s so super strong (and cute!) 🙂
PT, OT and speech are only provided in the public school IF they are required for the child to receive his or her education. If you child can communicate and “get around” then speech and PT will probably not be offered. I live in a very small community, there is NOT a PT at the elementary school, the OT does PT. Our IEP is coming up in 2 weeks, I’m going to be extremely unpopular, EXTREMELY because I am bringing up due process and denial of services. DO NOT let the school district push you into an IEP, DO NOT let them tell you that a regular teacher does NOT have to attend. Stand up for your child!
My son Dalton had therapy atleast twice a week . With all theripst. We were pretty lucky to have them they were great.
We knew before Oliver was born that he had DS. Because of this I had time to look into the options available. We live in a remote area in northern MN, there are not a lot of options. The birth to 3 program here in MN is run through the school district. I met with them while still pregnant with Oliver. I met his teacher Missy,(who is like family now, we love her!) as well as the speach therapist and the head of the special ed program through the school. I know this isn’t an option for everyone, as not all people find out that their child will have DS beforehand, but I truly beleive we have given Oliver advances because we did know ahead of time. The day Oliver was born, his teach was aware and as soon as we got out of the hospital she was over. She introduced OT right away. She has been a great advocate for us. We also have an amazing pediatrician. Oliver has had 2 heart surgeries. Because of his surgeries his Dr was very concerened about germs and making sure Oliver was as safe as possible. Because of where we live we have horribly cold winters and our clinic is full all the time of everyone with colds. They wanted Oliver to get to 10 lbs before his 1st surgery if we could. Oliver was very slow to put on weight, so he needed to be weighed twice a week. Our dr arranged home health to come in and weigh him so we didn’t have to take him out and expose him. We only had to go in for his actual shots and appointments/echo’s. We never once watied in a waiting room. Between Oliver’s teacher and Dr we have had everyone added as needed to his growth and development. Oliver is tiny and doesn’t walk or crawl yet, but he is very close to crawling. He has PT twice a week and OT once a week in our home. His two surgeries set him back physically, but I can’t imagine where he would be without the team we have helping him/us. He is the most amazing boy and it breaks my heart that not all people know what is available to them. This was a great post, thank you for taking the time to write it. We need more great pediatricians here in Thief River Falls MN, so if you ever want to move, Noah would have a best friend just waiting to play!!! hint hint!
Excellent information. I work in home health & payers are adding heavy requirements right now. Referrals are down & many suspect the influence of the looming election.
Technically either therapist can provide early developmental therapy. But neither can legally provide the other. (Unless you are like me.)
I’m a little offended by your implication that a service provider is no good because they use therapy aides.
I’m an aide. I work every day with children with DS. I have an early childhood degree, but also years of experience working with children and therapists. The therapists are in such high demand that they can only visit once a month- so they give me detailed instructions, and I provide the therapy. Mom and Dad are included in all the visits, and every visit we tweak what I’m doing and improve the child’s program. My child development background is considered extremely valuable and useful when considering next steps and how to address goals through play.
My clients are all making gains above or on par with their peers who are receiving private therapist time for a half hour a day (my clients receive 3 hours a day.) The services they’re receiving are in no way sub par. I’m another brain on the team, someone with a valuable background and ideas to contribute. I fail to see how that’s a negative. My clients parents are all fighting to keep me, and their children are making amazing gains.
Just because I don’t have a masters doesn’t mean I’m incompetent.
I hope you know that we are not trying to offend you or say that your job is not valued. You are obviously doing a fantastic job at what you are doing. We do however hear about what other people go through and these are tips for those people as Early intervention can be a very frustrating thing for them. I wish you could go to all of their houses and show them how it is done 🙂 thanks for your comment and again we know there are people out there doing a fantastic job we just wish there were more of them.
I’ve just spent the last two months trying to figure this stuff out. Crazy how unhelpful organizations are with this info. It’s sad to me how overrun they are as well. In AZ the government contracts out to private companies so there are only two real options. Unfortunately, unless you qualify for Medicad (here it is still based on parents income until they are three) then things get crazy. They contract out to whoever has an opening so often it’s not in one o your providers listed and rarely cover in home services. (Which I’m hearing is still considered the best for young children, is that true?). Even then our insurance will only pay for 30 visits annually and we have phenomenal insurance! In the end it was going to cost us $2000 annually to just do PT at home (it’s what I prefer since I have a 5 and a 3 yr old as well). We were told that it might be cheaper in the end not to have insurance cover any of it. (Incidentally the company providing the therapies charges differently based on what your insurance is and what area you live in. Apparently our PT session cost $180 whereas other areas cost only $75 – is that not screwed up or what!). So I bought the book you recommended for PT and have been using that while we try and figure this out for the new year. (Which by the way, a big thank you to ou!). I began wondering if this was just in AZ or also a struggle everywhere else. We talk as a nation about how important our children are and yet the hoops that we need to jump through to get them the help they need are insane.
As an EI provider for 20 years and a speech therapist, I appreciate the comments. Depending on the program, you may receive a Therapist as a Service Coordinator also. I have done both. I think that EI strives to have quality services. We are not a medical model, our mission is to help the parent help the child. We are a model and a coach. The therapy happens between our visits not during our visits because we are teaching the parent how to incoporate strategies into their natural environment and daily routine. Research confirms that this method is effective when working with children under the age of three. Not one program is right for every family. I just hurt when I see all EI programs lumped into one. Thank you for listening.
Wow, I completely disagree with some of your points. I think as a pediatrician, you may be stuck in the frame of mind that EI is like CLINICAL THERAPY. The the goal of EI is to SUPPORT FAMILIES with their child’s development, providing strategies for the family and MODELING what that looks like for the family. So, if you do not even understand what EI is, I question your credentials for writing an article to serve as a guide for families on it.
Also, I have my MASTERS degree in ECE and am a Family Service Coordinator, I am wholly qualified to provide intervention strategies as well as model them for the family, while it is not my job function, I am more than capable of adding input as a EI team member. So please edit your statement to reflect that not all service coordinators are clueless when it comes to children’s development, and most have had more than “training”, a very ignorant misconception on your part, very misleading.
Not every child in EI needs a therapist. In this instance, a Developmental Specialist, is more than sufficient.
If the family only has an FSC going to the home, the agency is lacking, not the FSC, as it is not their job function to provide Developmental Instruction. That should be noted as well.
Thank you so much for posting this! I am not very happy with ECI at all!
You are right. Maybe my experience was just bad but if I have a choice and have private insurance then why not look else where. I want my son to reach his full potential! I am not looking for someone to come out at chit chat with me. He’s 5 months now and I still haven’t seen a physical therapist! Children’s Hospital actually contacted me to have my “Goose” evaluated!
I feel like he could have been seen a month ago as he was already trying to lift his head! I can’t wait for him to get started. (-:
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