First Steps Early Intervention

The problem with First Steps, in my opinion, is it all comes down to "the almighty dollar." When our son was 22 months old, it was our day care's director who said she was seeing some "red flags" wiith his development. She handed me a First Steps pamphlet and told me to give them a call. I called First Steps about a month before our son turned 2 years old. The woman that took my information asked me how many "words" our son had at the time. I told her he basically had three: "ma," "da," and "ba" (for ball). She then asked if he understood things that were being said to him, which is called "receptive" language. I told her that I believed he did understand receptively and could follow simple one-step instructions. (i.e. "Go get your sippy cup.") The intake coordinator that I was talking to then told me that in order for our son to qualify for First Steps, he would need to have an overall delay of 50% or more in BOTH receptive and expressive language. Quite honestly, I was a bit naive about how things worked back then. She kept saying, "Do YOU, as the parent, feel he has an overall delay in BOTH areas?" Of course I came back with an "I don't think so" response. Two months later we had our son's 2-year check up with his pediatrician. My husband and I mentioned how concerned we were that our son wasn't talking yet. The doctor kind of smirked and very matter-of-factly said, "He's a boy; boys take longer to speak than girls do." All I can say is I wish to GOD I HADN'T listened to him and went with my "gut feeling." I knew it wasn't right that he wasn't talking yet, but when my doctor didn't seem worried, I thought it was "normal" and that he was just fine. We ended up switching day care centers and began a new day care within our district. Two weeks after he started there, I got a phonecall from the Parents As Teachers woman who had been seeing our son. She was at the school one day and saw our son in the classroom setting. She told me that his "classroom teacher" at day care was going crazy because our son was eloping from the classroom 20 to 25 times a day. She suggested we call our pediatrician. He was 2 1/2 years old then and we again called our pediatrician. When I told him that this was the second day care that saw problems, he FINALLY referred us to a pediatric neurologist. After filling out a number of questionnaires, we finally met with the neurologist. Within five minutes of this doctor observing him, he daignosed our son with PDD-NOS (Pervasive Developmental Delay - Not Otherwise Specified, which is on the "Autism Spectrum." Our lives changed that day, and have every day since then. Now that we had an actual diagnosis in hand from a reputable doctor, our son qualified for First Steps. Unfortunately, I trusted First Steps to give my son what he needed. They only gave our son one hour of speech/language a week and one hour of occupational therapy every OTHER week.

I certainly don't want to scare you, S., but for your child not to be speaking at all at 21 months of age . . . that's not normal. I would definitely have him evaluated by a medical specialist (pediatric neurologist or psychiatrist) and request an overall developmental evaluation be performed. If someone had clued me in to knowing what autism was six years ago, we may have been able to get my son more of the early intervention he desperately needed when he was 2 1/2 years old. Again, I don't want to rattle you, but please do not just accept what First Steps says and do nothing else. If I knew then what I know now, I would have definitely got our son extra Speech and Language services, even if it meant we had to pay privately. Unfortunately, time is of the essence and life isn't a dress rehearsal. If you think First Steps is really wanting to help your son, think again. There have been tremendous budget cuts over the past few years, and one almost has to BEG in order to get appropriate services. Nine times out of ten, the services offered are less than appropriate for any kiddo.

Who exactly evaluated your son? If it was a teacher, they can't diagnose an autism spectrum disorder. It's scary, but there are so many pediatricians out there who know very little about autism spectrum disorders. We trusted our pediatrician. We thought we were doing everything right. He almost mocked us because we were a little over protective of our son. We lost months of early intervention thanks to him. Back when our doctor was in medical school, the incidence of an autism spectrum disorder was 1 in 10,000 children. Today, the incidence is 1 in 150 children. I suggest you Google warning signs for autism. We didn't think it was a big deal that our son didn't play "peek-a-boo" or "pat-a-cake" or be able to point at certain pictures when requested to do so in a book. I do remember calling his name a lot and him not turning his head to look in the direction of where my voice was coming from. I at first thought he might have a hearing problem, but if I around in the cabinet where the pots and pans were stored, he could hear that noise, so I knew he wasn't deaf. Ahhhh. It sickens me that more isn't written about autism and the signs and symptoms in all those "What to Expect When You're Expecting" or "What to Expect the First Year"-type books. We perceived our son to be developing quite normally. You'll rest a bit easier if you look in-depth into his overall development in many areas, not just speech. (i.e. gross motor skills, fine motor skills, sensory integration dysfunction, etc.)

Please, please, please don't think I'm trying to scare you. It's just that I wish someone who had "been there" before us took our hand and clued us in to what might really be going on.

Best of luck to you and your family. Hopefully, it's nothing more than just a minor speech delay, but you can never be too cautious . . . especially with the rate of autism increasing steadily year after year.

My guess is that he doesn't speak as much because he has learned to sign some of those words. Try making him try to say things instead of just signing them.
Speech therapy is wonderful, I doubt that he will need additional therapy at least wait and see how he does you M. find that he can talk more than you think.
I have a good friend that tells about taking her first born to the doctor because he wasn't walking yet (can't remember the age) and the doctor told her to go to the other side of the room and her son walked right to her! One embarrassed Mom!
Just keep up a conversation with your son everywhere you go he will soon be talking way more than you want and you'll long for the day's of silence :)

My son has been in First Steps since 8 months (he's now 18 months) and started speech services shortly after he turned one. I absolutely LOVE his speech therapist. My son's situation is different (we suspect nerve damage may be affecting his speech), but I have confidence that his therapist will help him get where he needs to be. His speech therapist visits once a week. He was also recently evaluated by the Speech/Hearing department at Children's Mercy and they determined that he needed additional services (again, likely different issues/obstacles going on) so he's on the waiting list for speech therapy with the hospital. The hospital recommended my son receive 1-2 sessions a week. I'm not sure that you need to supplement with additional services just yet.. See what First Steps can do first. It's very common for boys to be "late bloomers" when it comes to talking as they are too active to stop and talk. If you have any specific questions, please ask!! We've had several therapists w/ First Steps and his speech therapist is by far my favorite!! Good luck!

My daughter was born with a cleft soft palate and pierre robin sequence, so she was born into the First Steps program. My experience with using First Steps in St. Louis and now in KC is great. The reason I say great is a coordinator was always contacting me regarding what is available and telling me what is available or what my options are. Thankfully we've only needed speech therapy but they were a great source to any other area of therapies that my daughter would have needed.

They definitely are a great start to get going on what your son needs. The sessions are an hour per week, which is too long to keep a child's attention the whole time, so sometimes it seems to be a play session at some point during the hour! I have watched our therapist, Mindy McNealy, use everyday play games, like hungry, hungry hippos and turn it into how to sound out words while they're playing. She also brings her all different things to help her practice, like a whistle or a nose plug or bubbles!

If your son is qualified for a service, go for it and get him started since he is soo young...it's the best time to start! You can always do a supplement service or sessions with another or additional support service. The speech therapist will be able to tell what your son needs after he/she starts working with your son.

You can always contact the speech therapy department at Children's Mercy, they have a list of options or the country and then your school district takes over, if he qualifies, once he's 3. We are in the Liberty school district and they have a preschool for children with all different needs, if they qualify.

Good Luck and it's better to get started earlier rather than later.

I highly recommend First Steps! My son started therapy through them for his mild autism at about 28 months, and I was very pleased with the help he received. I would not overload him with extra therapy, as it could be sensory overload for him. Also keep in mind that most insurance companies do not cover services for autistic children because they (insurance companies) unfortunately consider autism a mental illness. (You will be fighting for your child's rights from this day forward.) So if you plan on paying for anything out of pocket, be prepared for huge expenses. I know of at least 3 families who had to claim bankruptcy after paying for therapies that they could not get free or covered somehow. We actually refused behavior therapy that our son needed due to insurance not paying for it, and it was going to cost almost $1000 a week! So be prepared. But DO trust First Steps. They will "walk" you through everything. Good luck! You have a long road ahead of you, but stick with it, as you are your child's best advocate!

My son was about 30 months before we realized he was not using as many words as he should have been. (he's the second child, big sister talks for him, you get the idea) We did parents-as-teachers until he aged out of the program and we were really happy with the results. Our speech therapist recommended the peer model program through the school district. He qualified for that and went through two years and we are thrilled with the results. He started out as a language kid - he needed to learn the words to be able to use them. As he got older they worked with him on the proper pronunciation of the words which is the speech part of it. Anyway, he's going into kindergarten this year and talking is no longer an obstacle.

One thing I would recommend, continue to sign with him but speak the words as you sign back to him. It doesn't hurt to know the signs - as long as he is hearing the words he'll get it. It just takes some kiddos a little longer.

Dear S. T--could I suggest that you call the Missouri Developmental Disabilities Resource Center and ask to be included in the Sharing Our Strengths Program? This is a program that is free that helps parents, family members, people with disabilities, or professionals connect with a trained mentor to discuss ideas, talk about experiences etc. regarding developmental disabilities or special health care needs. There are over 400 trained mentors in MO, and this is the MO "parent-to-parent" mentoring program. All of the mentors are trained and have personal experience in the area you request. For example, you could be paired with a mentor whose child also shared in the First Steps experience with a speech therapy program. Mentoring is done by phone or e-mail and the time duration can vary from a one time call to an 8 week match with the mentor. You could ask questions, share ideas, gain some insight, learn about questions to ask, etc. Again, the mentor program is free, and can be accessed by calling 800-444-0821 or local to KC ###-###-####. I hope this information is helpful for you! Sincerely, J.

I got my son involved with FirstSteps when he was 18 mos, and he had speech and ocupational therapies each one day a week, and physical therapy once a week for the first year, then backed off to every other week and once a month, until he turned 3. He then started preschool the day after his 3rd birthday, in the special education class. nobody ever came out and said "He is autistic" but that word was certainly mentioned over the years of his therapies and prechool days. (He received speech and OC during school too.)
This year he starts kindergarten, and he will be going into a regular class, not special ed. He went from sitting in a corner, dropping blocks on the floor and making no eye contact and not speaking at all, to a very loving, outgoing Chatty Cathy boy. (Makes me ask myself just why I wanted him to talk so bad, as I can't get him to stop talking sometimes, haha.) When we see his therapists around town now, they still remember him, and are so happy to hear how well he is doing.
I had lots of people tell me that he was just a late bloomer, not to worry, and don't mess with FirstSteps, but I have to say that it was the best thing I could have done for my son, and our family. It completely turned him around. Who knows, he might have been fine without it, but my gut tells me that it would have been a long and painful road to travel.
FirstSteps has my vote, and my thanks forever. Good luck with your journey!

NO! Don't do it. I had the WORST experience with First Steps. The speech therapist only showed up once a month (scheduled for once a week) and would show up unannounced. She did NOTHING but tell me things I already knew.

My son was exactly like your's. He said very few words until about two and a half. Now, I can't shut him up. I completely understand your concern, and maybe the private speech therapist would be ok, but I found the First Steps program in NKC to be a complete waste of his time and my money.

S.,

I have 2 1/2 year old triplets, one of which has been receiving first steps therapy for about a year. I have been VERY pleased with the service. His speech therapist, Kim Golden, is awesome! I highly recommend her if they haven't chosen someone for your little one yet. My son has been getting speech for about three months now and I can't believe how much his vocabulary has expanded. I suggest You go for it. The service is free. Try it out for a couple of months. If You don't see a big enough change after the couple of months, then You can look into other options.

Hope that helps,
D. S.

My son was in First Steps from 18 months until he turned 3. I absolutely loved both his speech therapists. He was started with 1 day a week but then they did move him to 2 days a week. I am so happy with the whole First Steps program. They were a huge help in getting him in the Special Ed preschool through our school district.

Research shows that sign language encourages the development of speech and I've seen that work with my own daughter who went from being non-verbal, to signing, to signing with a delayed speech reaction to fully verbalizing what she wants to say.

The trick about First Steps (or any kind of services like that) is you have to present the worst case scenerio. None of us like to say or hear bad things about our angels. We want to focus on the positive but if you sugar coat it than they won't even test to see if you qualify. I would never lye but I give the worst examples because as mommy, my vision of reality is always tainted. And if they test and we don't qualify, the only thing lost is time. But if they don't test and we should have qualified, then you loose valuable time that could have made things better.

Developmental therapy should look like play because they're teaching your child how to play but speech therapy should be a lot more than playing. Supplementing privately isn't a bad idea if you can afford it or your insurance will cover it but you should try asking First steps for more first.

My now three year old daughter received services through First Steps for a year, and I was very pleased at the progress she made. We worked with Parents as teachers, first steps, through our doctors office, and through Children's Mercy's Speech and language department. What I thought was a hearing problem was diagnosed as severe autism. She had regressed from starting to speak to loosing words and tuning everything out. We started with speech services, added occupational therapy, and then ABA therapy once she was diagnosed.

She did receive very intensive therapy, but she went from being withdrawn and loosing words to now at least being able to repeat more words than I can easily count. She uses spontaneous phrases, she engages us in eye contact, she is still mostly echolalic (repeats what we say), but at least she is becoming more verbal all the time. I was a single mother at the time, and I don't know how I would have been able to afford those services any other way. I will be forever grateful to the program that helped teach my daughter basic learning skills like attending and imitation. I learned how to do the therapy with her and worked with her in between sessions, and I know that helped her development too. I love that part of First Steps, parents can learn how to do the therapy too even when the therapists aren't there.

The one thing I was glad other parents told me was that if I was ever uncomfortable with a therapist, I could ask for a replacement. I had complete control over who worked with my daughter. Fortunately most of my daughter's therapists were wonderful, there was only one I ever asked for a replacement for. Her new therapist was so wonderful, I am glad I made that phone call to ask for a new one.

In the interest of full disclosure, I was so impressed with their services that I have begun working for first steps as a behavioral therapist implementor. There is quite a screening process that therapist have to go through to become certified to work with the program.

As far as your son goes, the more you can engage him in communicating with you, even non verbally, the better. The amount of therapy depends on what you feel he can handle. My daughter loved most of her therapy and she got 10-12 hours a week. Only 2 hours a week were speech though.

Good luck

J.

My daughter born 15 weeks premature received physical and occupational therapy through First Steps for her first 18 months. I was VERY pleased with the therapists, her progress, the instructions they gave me to do in between sessions, and the whole progam itself. If you haven't already, you and your coordinator along with the therapist will come up with an individualized plan including how often your son will meet with the therapist. I would think that additional therapy would be unneccesary. Your coordinator and therapist track the progress and can revise the plan to increase or decrease sessions as needed. First Steps is a great early intervention program that can do wonders for kids.

S., my son is a little older than your son, he turned two in June...we have not been involved with first steps for very long, my son has speech therapy through First Steps one hour a week, developemental therapy one hour a week and we are going to start ABA therapy soon. My son is either A LOT delayed or he may be Autistic, he definitely tests "on the spectrum" right now so its kind of a tense time for us. I know that early intervention can only Help and can never hurt...that being said so far I am not over the moon crazy with what I have seen so far...so far it seems like he has hour long play dates and me stuck with a stranger in my house...I mean, I have a background in early childhood education and I Do play with my child! But I am determined to give it a healthy honest try...and I urge you to do the same. Honestly Alex has picked up more signs from the DVDs baby signing times than anything else. Alex uses very few words on a regular basis, maybe 5 that he uses daily...so I will take any method of communication I can get from him. Lots of luck to you and your son.
B.