i'm running out of optimism (Speech Delay)

StrivingArtist · December 2014

I've not posted on the Special Needs board before now, though I have been lurking for several months, and am reaching a breaking point. I would love and T&Ps, or any uplifting words from women who have been here. I don't really have any friends to talk to about this. I'm also sorry if this is rambling, long, and incoherent.

My DD1 is 39 months, and has a severe speech delay. When she was screened at 30 months she was scored at 12mo for expressive and 16 for receptive. Her therapist later said those numbers were probably too low, and that DD just tests poorly, but there they stand. We were in therapy through a private SLP for five months before insurance, LAUSD, and a cross country move put a stop to that. I am now slogging against the PA equivalent to get her back into therapy.

She's so far behind, and she is now regressing despite me continuing sessions as well as I can. It causes us to get so angry at her attention seeking. We have a 3mo DD2 and the adjustment would be hard even if DD1 could talk, without it, my world is made of kicking, punching, timeouts, tantrums and chaos. I feel like every bit of advice I get on dealing with toddler attention seeking relies on explaining why it's bad, and having them tell you when they need you, but it isn't an option with her. That just frustrates me more, which she senses and responds to.

DD communicates pretty well non verbally, has a few solid words, up, no, yah, more, ready set go, she can count to five, a few others, but has never said Mama or Daddy or anything like it. And that, more than any number of bruises, is just killing me. I truly think that if DD2 says Mama before DD1 I wont survive it. I really think my heart would just break. I am her mother, and I just can't stop feeling like I've failed her. How do we cope with that guilt when we are hardwired to feel that way about our children? How do I look at her without starting to cry?

Of course this feeling comes and goes, but now, looking at Christmas again, remembering everyone saying last year not to worry, that by this holiday, she'd be fine, I just can't stand it, and next week starts the marathon of holiday meals with the various family members. I have to glue on a smile, and I can't remember how right now. So, any suggestions would be appreciated. Thank you.

ppants · December 2014

Congrats on your newest edition. I don't have advice(my nearly 9 yr old DS has ADHD), but wanted to offer you a welcome and hugs!

macchiatto · December 2014

I'm sorry. That does sound like a lot to deal with while also adjusting to a new baby. I'll be thinking of you. I hope you're able to get her into speech soon.

FWIW, my niece started speech therapy at 4 in the Lancaster, PA area. Not sure where in PA you are but I could ask SIL who she went through/how the process worked and PM you the info if that would be helpful. They were really happy with the therapist she worked with.

Unknown · December 2014

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StrivingArtist · December 2014

Thank you for the responses and the encouragement. I think last night was a low as this has brought ever me, and it's reassuring to hear other's (written) voices. I had a good long cry before, during and after writing that post, which helped let go of some of the stress and made today easier.

A few other details now that I am more rational and can introduce me and DD better. She is excellent at communicating what she needs most of the time. She gestures, she jargons, she has a few signs, she baffled her therapist. At times the jargoning--which is almost constant--sounds so much like a sentence rhythmically the whole room will turn to look at her. When she is with a sitter and the sitter simply doesn't understand she has had outbursts of language, like she resorts to English when nothing else works.

We did come around to speech therapy late, me, my husband, and large parts of both families spoke later than two. We were also sporadically insured before she was two, and it resulted in us not being pushed like we would have been by a consistent pedi. I regret that situation, but that was our circumstance for a long time.

We have had an informal assessment for behavioral delays that happened while we did the speech assessment. Nothing conclusive, but enough that we were going to do one through LAUSD -- who dragged their feet so long she hadn't even seen anyone when we left. Now we will be doing one with the new speech assessment at the end of January. I expect that there is some delay in behavioral development whether because of or concurrent with the speech delay I don't know. The only suggestion has been ASD, but even the ST said it would be very minor, and I'm extremely grateful for that. On a good day DD doesn't seem any kind of autistic, on a bad day, it seems highly likely, so I am researching while I wait for the assessment.

As for her scores, she has not been reassessed yet, and had I known then what I know now, I would have requested a second or third reassessment with the same SLP so DD could get comfortable. She tends to be a little withdrawn in new circumstances, which is usually seen as a polite toddler, but with an SLP comes across terribly.

Thank you again, you brought me back up above the water line today.

mommy0411 · December 2014

I just wanted to give you some big hugs! My DS1 was diagnosed with autism at 21 months while I was pregnant with DS2. Everyone has given you good advice so I just wanted to add that it is hard seeing DS2 over come DS1 in certain skills (for example DS2 is much more social and has amazingly appropriate play skills). But it is truly a celebration to see how typical DS2 is! And they love each other so much it is truly a joy! DS2 has taught DS1 a lot and vice versa!

veggieroll · December 2014

Welcome and hugs. DS has a speech delay and only has one word (he's had others but lost them all). I definitely get the wanting to hear mama and dada. I have dreams all the time about DS calling me "mama" and really can't wait to hear him actually say it. I hope you're able to get services back soon.

inlove5 · December 2014

First off- hugs and sympathy from one mom to another. I can only tell you my story- please know that I realize what worked for me might not work for you and don't feel like I am saying it should.
   I remember feeling so desperate, reading every parenting book and even asking other play group moms what it was they were doing (translation- what am I doing wrong- what secret pamphlet did all of you get and I must have thrown away at the hospital telling me how to parent)- I was desperate to understand why my kid didn't respond to any technique I tried and why my kid was such a hellion while everyone else's kid was able to just play nicely together. In our case our DS1 has mild autism and a speech delay. At 2 1/2 he had just a handful of words. I had done sign language with him from 3 months (of course family members said that was why he wasn't speaking, the cloth diapers kept him from rolling over and the baby wearing kept him from walking- which of course is hogwash) he had over 100 signs and communicated well with them- they were a godsend and the speech therapist said it gave us a huge jump start- would you consider using either sign language or the visual flash card language many austism therapists use as a stop gap- (ask someone who knows more than I do of course before doing this).
   For us we had to stop giving him things till he made an attempt at the word- we would sign cookie and say cookie and wouldn't hand over the cookie till he made an attempt at saying it.

Fast forward to now DS1 is 6 yrs old and at or above grade level for speech- far above grade level in both reading and math (he is doing geometry, multiplication, and a little pre algebra- I have to get my brag in somewhere since most of the time I am talking about what he isn't doing). Anyhow his last speech eval said that the extravagant vocabulary of his caregivers is reflected in his speech and he is above grade level(again I have to revel in the positives when they are there). We do still wonder if there is something going on where he can't express himself when he is having an "autism moment" for lack of a better word- when he gets really upset it can be hard for him to take that moment and use his words instead of running or being physical- but that probably has more to do with where we are with the autism than where we are with speech.
   I have known so many people whose kids have speech issues and with early intervention and diligent caring parents (which you so clearly are) these kids have time and time again gotten past their issues and ended up at or beyond grade level by the time they are in elementary school.
I know it sucks, it is hard slogging your way thru this never ending battle of pitfalls, ups and downs, but speech delays do get better- I don't know how long it will take- it could take a long time but if that is the only issue you are dealing with I think your daughter has an excellent shot at leaving this behind. My Christmas wish for you is that five years from now this is just a memory of one of the trials of parenthood. Someone will ask you how her speech is and you will say- oh ya- you're right we did have to go thru a lot with that speech delay- I forgot. Honestly I barely remember worrying about my kiddo's speech issues. But maybe that is becasue I am too busy dealing with the current autism issues.
Also a little plus is that I had so much training in speech therapy that my DS2 was an early talker who has been way ahead of the game from day one. I naturally used all the same tactics to teach him to speak that I was employing with his older brother and he has an insane vocabulary to show for it (we all wish he would shut the freak up- in the most loving way possible). He was using sentences and paragraphs when my freind's kids were learning their first words and having full on conversations by the time his peers were stringing two or three words together. Plus I think that having a younger sibling has pushed DS1 along as he makes sure his little brother doesn't surpass him.
Just keep going momma and you will get your daughter to the best place she can be- and that is all any mommy can do. You NEVER have to feel like you are failing her, you are working harder than most moms and doing more for her than most parents have to do. You aren't a magician or a miracle worker. Just do your best and have faith that your little girl will have a good and happy life- that is my hope for my kids- that they are good and happy people. I don't know if any of that made sense or was helpful- it's late and I am tired and not making complete sense in my own head but I'm hitting post reply anyway : )

macchiatto · December 2014

@auntie, my mind was just blown by a word before 10 weeks and 2-word phrases around 6 months! I know that's got to be extremely rare ... over the years, have you come across any other kids with speech *that* early? That's amazing!

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