EI starts off with the assignment of an EI service coordinator and an initial evaluation to figure out what therapeutical services will be beneficial for your child. During the evaluation you will be asked what things are important to you and your family concerning your child. Based on this evaluation and your input, a team of therapists is pulled together to help you and your child reach the goals you have set out.
The goals are written up for a six month period in a document called an Individualized Family Service Plan (IFSP). The IFSP is a living document that gets updated every six months (and sometimes sooner depending on any special circumstances) to reflect your families on-going needs and goals.
It is important to know three things about EI therapists... first of all, they work for you and your child, and you get to decide if the relationship is working out. If you are uncomfortable with a therapist for any reason at all, you can ask your EI service coordinator to switch the provider. Second, not all EI therapists have experience working with children with Down syndrome. And third, there are several concentrations within specific therapy fields. For example, some occupational therapists may have a strong background in sensory, while others may have more experience with self-care skills such as feeding and dressing.
When you are determining who will be working with your child, you should make sure the provider has experience with children with Down syndrome, and a level of expertise in the areas that are specific to your goals. In other words, not any old therapist will do.
Almost all infants with Down syndrome can benefit from working with a physical therapist (PT) and a speech and language pathologist (SLP) with a background in newborn feeding and oral motor skill development. Some infants may benefit from spending time with an occupational therapist (OT) who can provide a sensory program that includes deep pressure and brushing. Between 8 to 10 months of age, you probably should start pushing for a special instruction teacher. This educator will use play therapy to begin teaching your baby sign language, concepts such as in/out and up/down, as well as choice-making and other cognitive skills.
When EI is working right, you will find that you have a team of encouraging therapists who are:
—showing you at a detailed level all of the amazing developments your baby is achieving.
—training your child’s neurological pathways in effective motor activity and motor planning.
—teaching you how you can incorporate basic skill development into your baby’s everyday routines.
—teaching you how to provide your child with motor training, and sensory and cognitive experiences and that will help him develop constructive life skills.
EI is not about pushing your baby to the next big milestone, it is not about comparing your child to others, and it is not about making you feel inadequate as a parent. If you are experiencing those things, it may be time to consider some changes to your child’s team.
Your Turn
When did you start EI and what services did you start off with? What have been the pros and cons of EI for your family?
We had Jake's evaluation at 2 weeks old! In Washington State we have the birth to 3 programs. We go thru the Children's Developmental Center (CDC). Jake was fit with 3 therapists...a occupational therapist "teacher", a physical therapist, and a speech therapist. Unfortunately, Jake spent much of his first 18 months in and out of hospitals, so we somewhat feel like we are just starting. It is a truly amazing program & the therapist live their lives to help our special little people. Jake's physical therapy is done at the CDC, half his ot is at the CDC and the other half at home, and his speech therapy is done at home. A few times a month we go to the CDC for Play to Learn. It's a 60 min session with other children with & without special needs. It's broken up into 4, 15 minute sessions. Play, Art, Music, and sensory. It is exactly what it sounds like...playing to learn! The pros to this therapy are endless, I have yet to see any cons! How could there be...anything outside our everyday lives and learning is a bonus to us! We are so geatful for the CDC.
ReplyDeleteThis is a great informational post, Sandra. Personally, I have found myself mostly frustrated with the EI services here where I live. Unfortunately, there is no universal standards for EI, no across-the-board guidelines. EI varies so much from one area of the country to the next - even from one area of a state to another.
ReplyDeleteWe were offered PT when Finn was a newborn. That's it. So we did PT until early December when he was 17 months old. It started out okay, but as time went on, it seemed the therapist was only interested in pushing Finn to reach the next milestone - there was no help or guidance with motor planning or helping him learn how to properly manipulate his body. We have since quit PT and I have no regrets - he is doing really well all on his own as far as gross motor. At some point we may ask to restart PT, but definitely with a different therapist.
Finn is now 20 months old and we are now getting OT for him, which is working primarily on fine motor skills and feeding issues.
We were offered an "infant stim" therapist who did "global" therapy. I didn't like her and wasn't at all impressed with what she was doing - it was way too generalized and really not anything that we and the OT aren't already doing.
We still cannot get speech therapy for him. This is frustrating because I know that in many other areas of the country, ST is offered from birth. Finn is 20 months old and has no words. We are working on teaching him some signs, but I really wish we could get ST for him. What our SC is telling me now is that he's not ready for one-on-one ST because he needs to be at a certain cognitive level in order to be able to benefit from ST. It's frustrating and disheartening.
Lisa,
ReplyDeleteI am frustrated with the EI services in your area too! Your SC needs to be reminded that services are provided based on goals, not age. You have a six month goal to give Finn methods of beginning communication which include signs, spoken words, and maybe picture cards or some other symbol system for making choices. That is a completely reasonable goal for the stage he is at, and an SLP is the right therapist to provide the support necessary to reach that goal. Keep bugging your SC, or replace her too :-)
Oh Lisa, I'm so sorry to hear you are having such a negative time with your sons therapist. Are there any other therapist you can visit to see if you get a different answer? Our local hospitals have a speach therapy program that I am looking into getting Jake into on top of the one that is provided thru the Developmental Center. And as ds.mamma said, bug bug bug your SC for changes! Even if you never get the results from your SC that your son needs, the next child might because of you!! Keep on it girlfriend!
ReplyDeleteWe started with EI when Goldie was 5 weeks old. At first we just had an OT, but over the last 3 years she has also had speech, PT, vision, and special instruction. We tried 2 different special instruction teachers, but I didn't feel that either one was very useful. A lot of what they did overlapped with Goldie's other therapies.
ReplyDeleteThe pros have been the wealth of information they've relayed to us and their hands on help. The cons are the constant interruptions to the flow of our family life.
My son's EI speech therapist did not believe that any child with Down syndrome would benefit from speech therapy under the age of three - something about my son in particular not having better receptive language than expressive language - turns out she wanted an extra afternoon free to play tennis.
ReplyDeleteBut after two sessions with a private speech therapist my son was using dozens of signs and making several new sounds so his words were more intelligible, and moms of half a dozen younger kids with DS persuaded the director to hire a part time speech therapist who had a background in serving children with Down syndrome from birth. What a difference!
One way to bring therapists (ST, OT, PT) up to speed on working with children with Down syndrome in general and your child in particular is to bring in a book (like those in the Woodbine House Down Syndrome Series) and 'ask' the individual whether they think a particular chapter is relevant for your child, and whether they would recommend it for your parent group library. These long time loaners make a difference for your child and all who follow.
My son's speech clarity improved dramatically when he had a PT trained in sensory integration therapy - he had better motor planning that helped him form words and it seemed to help move what he wanted to say in his head out through his mouth. During SI horseback riding he would say words clearly, and put two and three word sentences together; the clarity remained for two or three days after his weekly ride.
Even therapists who have worked with one or two babies or toddlers with Down syndrome are likely to be reminded of or learn something that will expand their repetoire from the books available today. There is also great information online at websites like http://www.DownsEdUSA.org that are helpful for families and professionals. It can be hard to find a diplomatic way to offer information to EI staff without implying that their training is insufficient to work with your child. The best therapists welcome books and articles from respected professionals.
Something else to keep in mind is that enrolling babies and toddlers with Down syndrome in Mommy and Me, baby gym or mainstream parks department classes provides peer role models and keeps the whole family integrated in the mainstream of community life.
Two staff members from my son's early intervention center visited his Gymboree class when they noticed him 'blossoming' and participating more after just a few weeks in the mainstream program.
I loved finding this entry on Early Intervention - thanks to Terry Mauro's twitter message @mamatude. Thank you for writing it.
When did you start EI and what services did you start off with?
ReplyDeleteWe started when Jack was 3 months old. He started every other week with Physical and Occupational Therapy and once a month for Speech and Developmental Therapy. At one year of age, we bumped it up to every therapy once a week. And we have also added aqua therapy, which he LOVES!
What have been the pros and cons of EI for your family?
Pros: Therapists come to the house and help my child reach his full potential.
Cons: Can't imagine there would be any.
Great post!! I have had to make several changes throughout my two years with EI. I'm in the midst of making another change.
ReplyDeleteAnother thing to consider is that not every therapist can work within the dynamics of your home. I watch closely how my therapists not only interact with Ella but with my entire family dynamic. I homeschool and have six children so my house is constantly noisy and busy. I can't have a therapist that is uncomfortable with my situation or disagrees with what I do.
I want to support and encouragement for my entire family.
Also, a therapist may be kind and fun - but not doing the job required.
It's tough - but we need to be tough when deciding what's best for our families.
Again, wonderful post.
Windmills and Tulips
Jasmine
Thanks for this. Our first EI appointment with my 7-week-old is on Thursday. I am so grateful these programs exist!!
ReplyDeleteWe started with EI when Kellan was 7 weeks old! Yes, seems young, but there really are things you can do with them from the beginning. We started with OT because he was having feeding difficulties, I was breast feeding and he could latch on well but would fatigue quickly and not suck as strong as he should. His OT comes to our house weekly (was every other week in the beginning) and we added PT when he was 4 months old. We live in a small town in Montana where there isn't an overabundance of pediatric specialists, so I took him to Denver where there is an awesome ped. PT that specializes in Ds. Her name is Pat Winders, and she literally wrote the book on PT and DS- called Gross Motor Skills in Children with Down syndrome. You can order it online. It is a great guide with detailed instructions and pictures for working with your little one, beginning when they are just a few weeks old. I was amazed and excited to see my son reaching to touch a toy during our first session with her!! Anyway, I believe the key is early intervention in helping our special kiddos. Their possibilities are endless!!
ReplyDeleteI also live in a very small town in Montana! We had our first visit with the CDC intake coordinator when our son was about three months old. We were assigned a "Family Support Specialist"(FSS),who comes once or twice a month to help us implement our IFSP.I was really glad that we got someone who "fits" with our large family, homeschooling lifestyle. What I needed most at first was information, and she shared books and videos that really helped.She helped us find a wonderful Physical Therapist,just 30 miles from our house, and Nathaniel started PT at five months old.At first he went once every three weeks, but now(at eighteen months)he goes once every four or five weeks.When I mentioned to her that I would love to have the books from Woodbine House, she worked to get funding for it and ordered them for me. The biggest drawback we have had is speech therapy. Our FSS scheduled an evaluation three months ago, at the CDC office, but I was less than impressed.We came away with some tips on feeding, and they ordered a special cup(which really was helpful),but I really wanted more. The books are very helpful though, especially "Early Communication Skills for Children with Down Syndrome".
ReplyDeleteLisa, Finn is not only ready, but it is his right to have speech. I'm not going to bore everyone here... but if you want to talk via email about this, let me know. For whatever reason many EI systems have weird rules around speech therapy. But if you want to fight for it, you can get it. I promise.
ReplyDeleteIn Vermont they have an integrated system so we got a family support therapist who was just so great and had a wide range of knowledge for a child between birth and 3- oral motor, fine and gross motor skills, developmental milestones. Our worker was like part of the family and I mourned the loss when we graduated to the next program after three. I think she got break out SLT in the next stage of programming, Early Ed - after 3- and the therapist came to the pre=school so it was integrated into her school day.
ReplyDeleteI feel lucky when I read the horror stories of other parents. It also was good not to have three or four different appointments with different specialists. We got services from birth, she was offered an integrated pre-school experience at 6 months and our closest friends/associates remain from our years at that program and school.
great info! Maddie started getting services at one month old..it was great...for her but awesome for me..i needed the help and advice...we are so lucky to have the best OT...she really cares for us and Maddie...she has involved Max and we video tape her sessions so we can revisit them when needed...she comes weekly to our home...and will till Maddie is 3 years old then she will go to there center...smiles
ReplyDeleteMatthew started PT and DT services when he was 1 month old. OT followed when he was about 3 months old and ST when he was 8 months(?). I have to look at his file to get the exact date. Anyway, our experience with EI has been great so far. We transition out of EI in October this year. I can think of more pros than cons.
ReplyDeletePros:
- all his therapists communicate with each other on a regular basis to discuss Matthew's outcomes/ goals.
- they are very open with me, easy to contact via email or phone.
- they have good suggestions on how I can help Matthew in different areas of development.
- if I have a question and they aren't familiar with something I've brought up with them, they'll research it and get back to me (like when I asked his ST about PROMPT).
- they are very flexible with scheduling. Of course, I stay home with Matthew all day so it makes for easier scheduling versus if I were working outside the home too.
- they are very encouraging and supportive of Matthew's progress and victories, big and small.
- at IFSP meetings, they figure out how to make an goal measurable. All I have to do is tell them what we would like to set for Matthew.
Cons:
- I think our service coordinator can be more personable. But oh well, at least she gets the paperwork done.
If you're interested, I have a detailed post about the services we are getting now. Other moms from various states have commented and shared their experience with their EI too.
http://billandria.blogspot.com/2010/02/therapy-services-from-age-2-to-3.html
First off I wanted to thank you for your writings. You are right ahead of me and I am learning so much from you. Thomas (10mths)still has no teeth but I have been looking for just front teeth. Who would have thought to be looking for molars:) (That is just one of many things I have learned from you:)
ReplyDeleteThomas started "First Steps" at four months old. He started with PT once a week and SI twice a month. It took me a minute to understand what SI was doing, but she has a fabulous teacher background. We are starting on sign language and sounds. My PT instructor is young and smart, I enjoy her skills,but I feel she has too much "textbook" guidelines she needs to break free from. At 6 months I added OT once a week. She is fabulous. She teaches Thomas something and within a day he is attempting it. Its like she shows him what he is capable of and he then does it. Thomas bloomed when I started having PT/OT coming once a week. Its sounds like a lot but it really has worked for us. He is always stronger the day after therapy and now having it twice a week really keeps the momentum going.
My team has loads of DS experience between them. I am not sure where I would be if they did not. Kansas City DS Guild had a seminary in Feb that 3/4 of my team went to. http://www.downsed.org/en/gb/
I learned so much from DownsED people and so did my team. I feel at this time we are on the same page. I HIGHLY recommend going to any seminary you can from these people. Their knowledge is from very hands on research,and what they are teaching is so valuable. Take your team with you:)
oh man...I wrote out a great comment and it got lost! Will try again later...
ReplyDeleteOur EI teacher disliked me personally, and refused to give a straight answer to any question.
ReplyDeleteMe: "Why are you doing that?"
She: "Oh, I just thought it was something I'd try."
Me: "What I'm trying to find out is, is this diagnostic, or something that's good for him? Should we do it with him later after you leave?"
She: "Sure! Why not?"
Once I figured out it was not a personality style, but that she was actually preventing us from getting the information we needed, I resolved she would go.
Was a little more pro-active with our speech therapist. We told the developmental pediatrician he wouldn't give us instructions, but just came in, watched Liam, and left. I was considering who else we might get.
Next time, he showed up with a bulleted list of things for us to do.