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mightmom13
member
New to delays/EI/therapy/? behavior - help (long)
mightmom13
member
Hi
I had posted on here once before looking for any mito moms - and have throughout the last few weeks learned that no matter the dx; treat the symptoms, I am medical and should have known that.
DD was evaluated by our EI for speech: she is very low on their scale with speech (one word not using the tongue, little babble), they also noticed by observation and questions to me that she has issues with food so food therapy too along with a recommendation for ENT and swallow study; not only this but maybe my greatest fear - her walking started deterring and they noticed (along with a lot more physical things) this without me saying a word recommending a PT eval with them as well. I think that is when you know you are not crazy.
She has also had some, forgive me if I use the wrong words, behavioral and play things that seem off to me. She has been clinging to me for months and months now - to where she wants to be held not just on my leg. She takes "inventory" of her things when we/she comes back from an unfamiliar place. She plays by taking either books, blocks, cars, shapes from one area or container and gives them to me then puts them back. Her chosen attachment items are/have been personal care items - her brush, toothbrush, comb, pens, etc - and if you take them away lord help you. She has gotten into light switches lately. Pulls at her hair, finds joy in knocking her head against the highchair/wall. After her bath she clings to me, does not like to be lotioned (never has), and started screaming at diaper changes a good while ago - stiffening, knee knocking. Among other things.
She is 17 months, was screened for hip displasia, watched/treated (too late) for plagio - I think due to tort but no PT there, is constantly congested/sick, whines and cries in her sleep constantly, does sleep a lot for her age, has had allergenic reactions to dairy, berries, and cillin/cephelosporin.
I am a single mom, scared, and have the EI care coordinator meeting tomorrow. Will she help me understand? If not who will? My own mom feels I am too "first time mom" so I haven't mentioned to anyone about the behavior stuff, her pedi office doesn't listen or catch things besides the speech, won't refer to allergist until 2 - though they saw the drug reaction......I feel very alone in this. Any words or advice to help would be great.
This discussion has been closed.
Re: New to delays/EI/therapy/? behavior - help (long)
We are really new to the EI world too! My son just qualified last week for 4 hours of speech, 3 hours of OT and 4 hours with the early interventionist. He has a mixed expressive and receptive language disorder, a sensory processing disorder and low muscle tone and he is 20 months old.
It is all really overwhelming! We have been in private speech therapy for about 2 months now because we didn't realize how delayed my DS is and weren't sure he would qualify for EI. His therapist has been awesome about explaining what she is doing and teaching me how to help him at home. I ask every question I can think of and the therapists have all been wonderful in helping me understand. I also found researching his specific conditions helped me understand what was going on in therapy and why.
I had to fight our pedi for a referral for speech, they were completely unconcerned about his development. Needless to say I am in the process of switching.
Its so hard as a first time mom recognizing what is different about our children because we have nothing to compare them to. I thought I just had a quirky toddler but really I have a toddler who is constantly sensory seeking unless I intervene and give him the input he needs.
Good luck with your meeting tomorrow! Remember you are doing everything you can to get help for your DD! Hang in there!
Glad to hear you have a good therapist. The company assigned to my case was recommended by another mom and the therapist's profile looks pretty good - she will be doing the speech and food 1 hour each week with DD to start. She also has backgrounds in kids on the spectrum so that is encouraging - starting in the new year but looking foward to better feedback.
The case worker was just that, a case worker. Nice and all but my questions couldn't be answered. My pedi office needs pushing too, I have already switched pedi's within the office - but her regular won't be there for her 18 month in Jan due to maternity leave. Not sure, but since first steps recommended it - I think I am going to say lets do the ENT and swallow study. I didn't know that food could penetrate out of the esophagus until this board even with my background. Now I just have to pray for the strength to push and look the other way when people say "don't worry" or "first time mom" or "your wrong."