Need Advice re: losing IFSP services — The Bump
Special Needs

Need Advice re: losing IFSP services

Noah has been in the Infants and Toddlers program since May (5 months old). He just turned one. He currently sees the public health nurse (who's been acting as kind of a case manager keeping track of Noah's appointments, diagnoses, and therapies), an OT (who feels that he's pretty much where he should be at this point, motor skills wise), and an SLP (who also feels that while he is for sure still delayed, he's no longer delayed enough to recieve services). There's also a PT who is on the team on an as-needed basis, but we've not had to see her since summer.

During the initial evaluation, his biggest delays were in language (with receptive being more delayed that expressive) and adaptive behavior (mostly issues with his sleeping and eating). He used to not respond to anything, sound wise. We thought he was deaf or at least hard of hearing. We still have been unable to get a full read on whether he has typical hearing or not, because he's had fluid in his ears the last several months. We are working on scheduling him for tubes. We know for sure that he is hearing some things, but not everything. Either way, he will now dance to music if you turn it up loud enough, and he'll respond now to many more sounds. This responsiveness came on pretty suddenly around the time that the fluid in his ears was discovered, which was odd. He'd failed two sets of OAEs before with no fluid in his ears and then when we went for the ABR there was fluid, but he started responding more to sounds.

The OT was working with us on some of his reflexes (he's got abnormal muscle tone and reflexes), pincer grip, and crawling (which he does "one-sided") He does have a hand preference, which he's had since his services started. He does most things better with one side of his body. However, he's come a long way, and the neurologist seems happy with the results. The OT doesn't know what else to do with him. The kid is already walking now. (He's always been ahead on gross motor: neuroloist and the developmental ped think it's because of his muscle tone being tight - though it does fluctuate). The OT would like to drop back to an as-needed basis like the PT. I don't really have much of a problem with this. Like I said, he has come so far. Just seems like now, it's a matter of getting him to try to use the other side more often.

However, the one I'm upset about is the SLP.  Now, I know part of this is that she's going off what my overly-optimistic husband is saying during Noah's sessions. DH will see Noah do, sign, or babble something that resembles a word once or twice, and then will get excited that he "knows" that word or sign. He gets super excited and brags about it. (I don't know if this is relevant to either the aforementioned optimistic bragging or possibly to Noah's language issues, but DH is on the spectrum with a Dx of Asperger's. Noah also inherited DH's genetic duplication.) But Noah won't really repeat those signs or words or act like they mean anything at all. He does babble using different consonant-vowel patterns, (I haven't been keeping track over the last week as to how many of these he has though) and he'll say mamama, but that could mean anything when he says it. It's not specific. He DOES cry in protest if you have to put him down and he wants to be held.  He will sign "what" but I don't think it's more than just him waving his hands around. He used to grab at his mouth, which we took as an attempt to sign "eat" or "food" but he doesn't do that anymore. He has signed "milk" but it's not consistent at all. Maybe once every week or two he'll actually sign it, but again, not sure if it has any real meaning to it. He will smile and laugh if you make silly noises at him now. We've been trying to copy his sounds back to him, but he doesn't really repeat them, though he will sometimes throw another one your way, but usually he'll just smile or squeal about it. If you ask him "where's Daddy", for example, he'll stare at you, dumbfounded. He won't look if you point at something. He does wave "bye bye" sometimes if someone waves to him first, but maybe only 30 percent of the time.  It seems to me that he is capable of doing these signs, since I've seen him do them, but it's like there's no meaning attached to them. Like babbling with his hands, basically. His pediatrician was concerned that he has no words yet, and his neurologist wanted him to move up to weekly speech therapy as opposed to biweekly, which is what he'd been getting for the last six months. The SLP doesn't think he's even delayed enough to qualify for any services anymore, and that they don't really do speech therapy for kids under 18 months. She was brought in primarily to teach us ASL and open up another "channel", I guess, for communicating with him. And I think the ASL is helping in some ways. Since we started, he's started responding to sound... but it doesn't seem like the signing is holding any meaning for him, kind of like the random babbling. I do not want him losing the SLP services. That's where he needs the most help. (As a side note, his sister has a speech articulation disability and is getting ST in school. Speech seems to be the big thing we are dealing with out of both kids.)

I see the community nurse for Noah's six month review tomorrow, and I know both the OT and the SLP have given recommendations to cut back on services. As I said, I'm okay with cutting OT back to as-needed, but I don't think he's made enough progress to lose the SLP services. I even agree with the neurologist that maybe he should be getting more speech/language services. I don't know how to make this clear to them. Are they allowed to terminate services without my approval? What would I do then? Does it sound like I'm being crazy and expecting too much here?
Isabelle born via emergency c-section after her heart stopped 04.29.10
asthma, astigmatism, amblyopia, allergies, tongue and maxillary ties

Noah born via RCS 12.09.13
14q11.2 duplication, receptive language and adaptive behavior delays
multiple health concerns under evaluation
follow him here: www.facebook.com/lovefornoah

Re: Need Advice re: losing IFSP services

  • macchiattomacchiatto
    10000 Comments Seventh Anniversary 500 Love Its Photogenic
    member
    edited December 2014
    My son didn't start EI till closer to 3 so I don't know as much about evals and services at that age but I hope you're able to get him what he needs. I agree with auntie that a more robust eval would be wise if she's being overly influenced by the Daddy-goggles' eval. (I've had that issue with my H, too, at evals, where it seemed like he had the more positive spin on everything and a higher estimate of X's abilities. I feel like I end up sounding like the neurotic overly-worried mom when really, I'm the more precise and accurate one who's a lot more aware of typical child development and what he's like on a day-in/day-out basis.)
    fraternal twin boys born january 2009
  • We use an ST but my son is not doing any babbling or consonant sounds yet at 10 months. He will also clearly be delayed because he has DS, so our EI brought her in just for planning purposes. She had an opening and our EI really likes her, and didn't want to risk missing out when he was older. She was going to be as needed, but she helps with the feeding so comes weekly.

    Your situation sounds incredibly frustrating. Good luck and I'm sorry I have no advice!
  • So we had the six month review. The IFSP is being continued, but OT is likely going to discontinue after our next visit. The last thing we are going to try to do before we stop OT is try to get him drinking from a cup. The SLP is likely going to stay on for the time being, at least until we figure out where Noah stands in terms of his hearing. The nurse is going to be handing over Noah's case to an Early Intervention Specialist (she called them a "teacher") within the next two months. She said if she forsees a baby losing services by 15-18 months they usually just stay with her but she specializes in infant development and the "teacher" works with the toddlers until they leave the program. If they forsee more long-term intervention, it is handed off. She also said the "teacher" will usually see the kids more often than she does. Next month, we have a routines based interview with one of the supervisors, then we should be transitioning to the new teacher/coordinator within a couple weeks.

    Thank you for all the advice, everyone. The "Daddygoggles" term fits so well, too. For the record, the SLP was brought on when we had no idea whether he could hear at all to help us learn to sign. The nurse thinks he should qualify based on his duplication, so she will be putting that in. The original certification was done based on the delays because his genetic testing hadn't come back yet, and the rest of his medical issues were still up in the air (before the diagnoses started rolling in left and right re: his neuromuscular and developmental stuff).
    Isabelle born via emergency c-section after her heart stopped 04.29.10
    asthma, astigmatism, amblyopia, allergies, tongue and maxillary ties

    Noah born via RCS 12.09.13
    14q11.2 duplication, receptive language and adaptive behavior delays
    multiple health concerns under evaluation
    follow him here: www.facebook.com/lovefornoah

Sign In or Register to comment.
Choose Another Board
Search Boards