Just found out our baby is delayed

[Shuli]

Hi,

I am new to this forum, I've been hanging out in the multiples forum for about four years.

We just found out that our 18 month old little princess has severe language delays. They are not sure if it's an auditory processing problem, or she just doesn't feel like performing for the therapist (she really hates to be the seal in the circus :-) ). They say that she is about six months behind developmentally where she should be.

We have four year old twins who are very bright and did everything early and were walking and talking by 11 months, so this has been very hard for me to accept. We knew when she was born that there was something wrong developmentally, but we didn't know what it was. All the genetic tests either came back negative or inconclusive. When she was three months old and hadn't turned over on her own yet, I asked a friend who is a pediatric physiotherapist at a local hospital to take a look at her and we started her in treatment right away. She is still not walking, but she's really trying - she has low muscle tone, so that doesn't help either.

Right now she is at a private daycare three mornings a week with kids her own age and younger. It has been wonderful for her development, but I see that she is getting really frustrated that all her friends are already walking and starting to say two-word sentences and she only has about 8 words, most of which only I understand. We had her registered for September for a two year old program, but now that we have the results of her evaluation, I had to pull her out of there and am scrambling to get her into a special needs language enriched program in the area.

The hardest thing for me over the last few days has been to accept that she, at this point, will not be a typically developing child and that she has special needs. I knew from the beginning that she was delayed, I was just blind sided by the language delay. She is very smart and picks things up quickly when shown, but there are connections not being made. I guess I am mourning the loss of her just having physical delays and realizing that she has learning delays as well.

Our goal is to get her into a regular classrom for 1st grade, but at this point, she may have to go into the special day class in the integrated school we have in the area (totally getting ahead of myself, but I have a tendancy to do that). Just wanted to get any advice from BTDT mom's who have had to come to terms with having a special needs child. Thanks for listening to my ramble.

[SpottedFoxx]

Whoa there!  There is nothing in your post that says that your daughter won't be ready for a mainstream classroom by first grade.  You've got a million years between now and then (developmentally).  What you need to be doing is getting her as much therapy right now as she can handle.  The earlier the intervention, the less you'll have to do later.  If you haven't reached out to your local early intervention team, do so now. They will provide her with speech and PT and possibly OT (if needed) at a very reduced cost.  Just google your town & early intervention to find your local office.   One therapy we are doing with our son now which would help your daughter's speech & low tone is hippotherapy.  It's therapy on horseback.  You can find local riding centers at www.narha.org.  She is old enough to ride and it will help tremendously with her muscle tone and many centers work on speech while on horseback.   18 months is considered pre-verbal so once a week is typical.  

{{{hugs}}}

[Bokonon]

I agree with the PP, it sounds like you are really getting ahead of yourself and worked up over an issue that will likely be resolved with a few months, maybe more, of therapy.

My son had significant gross motor delays and didn't walk until he was 2.  He's 6 now and no one would know he ever had any delays.

At 18 months, 8 words and no phrases or sentences sounds pretty normal to me.  I'm not sure why you would pull her out of a program for 2 year olds when by that age, she will likely be performing at the same level as the rest of the kids in the class.

A speech delay is not insurmountable, especially when caught at 18 months.  1st grade is years away.  A speech delay does not equal special needs, nor does it warrant planning for a special class for 5 years in the future.

Please take it one day at a time and not jump to worst-case scenario conclusions about your daughter's very common, very treatable delay.

[Mosaic]

Originally Posted by Bokonon 

I agree with the PP, it sounds like you are really getting ahead of yourself and worked up over an issue that will likely be resolved with a few months, maybe more, of therapy.

My son had significant gross motor delays and didn't walk until he was 2.  He's 6 now and no one would know he ever had any delays.

At 18 months, 8 words and no phrases or sentences sounds pretty normal to me.  I'm not sure why you would pull her out of a program for 2 year olds when by that age, she will likely be performing at the same level as the rest of the kids in the class.

A speech delay is not insurmountable, especially when caught at 18 months.  1st grade is years away.  A speech delay does not equal special needs, nor does it warrant planning for a special class for 5 years in the future.

Please take it one day at a time and not jump to worst-case scenario conclusions about your daughter's very common, very treatable delay.

I have to agree as well. I can't believe that 8 words and 2-word sentences is really considered "average" for a 12mo (since you say she's about 6 months behind). DD1 had maybe 5-6 words until about 20 months, and then it took off like crazy. Her vocabulary, in both English and Spanish, is actually advanced now as a 4yo.

That said, I kinda understand where you're coming from. DD2 has some needs that we're working to get to the bottom of, and every time something seems "off", I wonder if that's a sign of a whole new set of issues that I never considered. That said, I can only do my best to address what we have right now and worry about later later.

[APToddlerMama]

I'm sorry you're feeling so down :(.  I don't want to minimize your feelings so hopefully you don't take it this way and it instead gives you some hope. First, I have worked in EI, and about half of the kids with speech delays caught up within a year or less of therapy.  Within a particular program, called Hanen, half the kids caught up within a 3 or 4 month span.  Also, my son was in EI.  At 24 months, he was a whopping 18 months behind in his expressive language skills.  Yes, you read that right.  At a six month level.  At three, his expressive language skills are on track in terms of vocabulary.  He says literally hundreds of words, complete sentences, etc.  He is still really hard to understand so receives speech for articulation, but he has essentially "caught up" and we understand 99% of what he says.  His speech therapist and PT have both told me that there is a really good chance that by 4 he won't need any more services.  Take it a day at a time... Kids can be late for a long time and suddenly catch up.  A six month delay at 18 months is pretty minor.  In our EI program, the rule of thumb was 10 words or more by 18 months or a child would qualify for ST.  Your DD is very close to that.  The fear of the unknown was the hardest part for me when DS was younger.  Someone reminded me that while I was letting my brain go to all the what ifs...what if he never walks/talks/etc....to also let myself go to the positive what if's.  Your DD is the same little girl she was before you had this information.  Hugs...

[beachcomber]

Hugs to you, Mama. It's hard to see your little one not doing things in the same timeframe as her peers. But, as other posters have mentioned, this isn't an all or nothing kind of deal. She may be delayed now, but that isn't to say she can't catch up or even surpass her peers. She may need help getting on the road but once she puts it together, you'd be surprised how fast she may go. I say this as the mom of a 5 1/2 year old who was quite delayed at 4. Then we started her in OT, SLP and social skills therapies and she's almost at par with her peers on many levels. She's come hundreds of miles in just one short year. Who's to say she won't be ahead of her peers in 5 years? Given what's happened this past year and the distance my girl has made, I wouldn't be at all surprised if she doesn't outstrip her counterparts down the road.

Anything is possible. Anything.

[Shuli]

Thank you all for your wonderful support. We don't live in the North America, so the system here is a little bit different. We had her assessed by the Child Development Center here and we got the results and I was in a bit of shock when I posted (my bd). Since then there have been some developments. I have had a chance to reflect on the testing that they did and realized that she just didn't "perform" that day and she's probably fine. She is definately not ready for the two year old program that starts in December, I had a very frank and in-depth chat with the person who runds the program and we both decided that it was not in her best interest to go there. Right now she is in a mixed group of kids and I see that she is frustrated because all of her peers are doing things that she is just not able to do right now. She also has low muscle tone, so that makes it harder for her to do things her peers do without effort. This morning I went to go and look at a mixed special needs daycare and it seems like it will be the right fit for her. They have therapists that come into the daycare to work with all the kids so I won't have to take time off work to shuttle her to therapy and they also have several age groups together so it will be less frustrating for her. She may actually be ready for regular preschool the following year. I am all for early intervention and now that we know what we're dealing with it will make it much easier to get her the help she needs. I also think, having run "tests" over the the last few days, that she probably isn't as bad as it seems, she just needs a little help. Once again, thank you all for your support and I'm sure that as the year progressess she will develop by leaps and bounds.

[SpottedFoxx]

Shuli - sounds like you are absolutely on the right track!  Wishing you and your family much Shalom :)

[hannahgrace]

You mentioned that she has low tone. I think oral motor exercises may help with her language development. My twins have very low tone and much of their language delay is because of their tone, their mouths are unable to form the shapes needed to speak. Oral motor exercises have helped alot!

[SpottedFoxx]

I agree with Hannahgrace and the exercises can be fun.  Sipping yogurt or pudding through a straw (crazy straws are hard and fun too), take a lollypop and have her "chase" it with her tongue. Place it on each corner of her mouth and tell her to have her tongue try to taste it.  On the upper lip and below the lower lip.  Stroking her tongue with the pop also helps (be sure to brush her teeth after).  Blowing up balloons is also great oral exercises.

[Shuli]

Funnily enough, she was already doing all those things on her own, and now that you mentioned it I realize I don't really have to do those excercises. She refuses to drink out of a cup unless it has a straw (completely skipped the sippy cup phase) and we don't really allow lollipops into the house :-). She even took half a step on her own on Friday - total accident and she refuses to repeat it.

But I think that she is just fine and she knows when she has to perform and when she doesn't. While they were doing the assessment they gave her a bowl and a spoon and told her to feed the bear. She looked at them, took the bear and started singing to it. It wasn't her use of language that was a problem to them because she actually has two new words since the assessment, it was that she didn't follow directions well. So I've been testing her at home and here are the results: yesterday my boys came home from a birthday party with balloons (which I don't allow in the house if I can help it because I just don't do balloons) so the boys were trying to blow them up. I told them that in our house that's my DH's job. So they were trying on their own until he got home. She had a balloon in her mouh (obvious to me that she was copying them and trying to blow it up as well). One of them went up to her and said "please can I have my balloon back" and she took it out of her mouth and put it in his hand. This morning I shouted to the whole house that it was time to leave and gave her a special invitation then went off to get school bags and such. The next thing I know she's sitting on teh floor next to me handing me her shoes to put on. No language delay there, my friends. Just a child that wouldn't do what they wanted at the assessment. Yesterday I took her for a hearing test to start the process for speech therapy. Smart little cookie figured out the pattern of the lights they use to accompany the sounds after the second sound. (They light up a light on the speaker that the sound came out of and they did alternate ears every time). Sigh. The hospital had her tested for Down's when she was born and the first test came back negative and when they didn't believe the test they did it again and it came back inconclusive, so I feel that every medical professional that we go to is trying to find something wrong with her - looking for something wrong with her - to justify their results. Anyone else feel this? I keep saying that there is nothing wrong with this child, she is just developentally delayed by a few months but I'm just the mom, so what do I know??

Thanks to all of you who took the time to read and answer my post! I'll keep y'all posted over the next few months as to how she is doing.

[nigellas]

You know, I think it's OK for you to be concerned for her future- that's a very normal feeling considering her delays.  That said, while it *could* turn into delays that are long-term, it could also very likely be just her development curve that turns out to be typical.  I've had both scenarios - I have a 4 1/2 year old with HF Autism, who, while otherwise developing typically, had pretty serious  language delays until he was about 3.  However - I also have a 2 1/2 year old who at one couldn't even crawl.  He didn't walk until 18 months and his language was delayed.  He was MUCH worse off than my son with Autism if you compared them both at 12-18 month – ironically he's now completely caught up and on track for his age.  You caught her delays very young, which is GREAT, because early intervention really can make a huge difference.    (Also – my youngest ended up being anemic, which contributed in part to his delays – just something else to consider)

[APToddlerMama]

Originally Posted by Shuli 

 The hospital had her tested for Down's when she was born and the first test came back negative and when they didn't believe the test they did it again and it came back inconclusive, so I feel that every medical professional that we go to is trying to find something wrong with her - looking for something wrong with her - to justify their results. Anyone else feel this? I keep saying that there is nothing wrong with this child, she is just developentally delayed by a few months but I'm just the mom, so what do I know??

Thanks to all of you who took the time to read and answer my post! I'll keep y'all posted over the next few months as to how she is doing.

This is only my personal experience, but I have felt the opposite.  I just knew and had a gut feeling that something was going on with DS and got a lot of "wait and see" from his doctors along with the feeling that they thought I was an overly worried first time mom.  In hindsight, I am glad I pushed for all the therapy, etc. that I did because it made a huge difference and it turned out I was right and something was going on.  Good luck to you.  I hope everything goes well for you and your daughter.  Sounds like you are doing the right things. 
 

[Emmeline II]

Originally Posted by Shuli 
The hospital had her tested for Down's when she was born and the first test came back negative and when they didn't believe the test they did it again and it came back inconclusive, so I feel that every medical professional that we go to is trying to find something wrong with her - looking for something wrong with her - to justify their results. Anyone else feel this? I keep saying that there is nothing wrong with this child, she is just developentally delayed by a few months but I'm just the mom, so what do I know??

It doesn't seem to me that they are trying to find something "wrong" (by your own admission there is; severe speech delay and low muscle tone) they are just trying to identify the reason and are stumped that the labels that match the symptoms aren't backed by any known tests -- though if the label won't change therapy/treatment I'd point that out the next time they want to do a test. Though it seems that children just sometimes have language delays, low muscle tone more often has a reason that is eventually identified. If you search this board for "low muscle tone" you may find some helpful posts.

Edited by Emmeline II - 6/21/11 at 10:25am

[Linda on the move]

Originally Posted by Shuli 

We knew when she was born that there was something wrong developmentally, but we didn't know what it was.

...I knew from the beginning that she was delayed, I was just blind sided by the language delay.

Originally Posted by Shuli 

But I think that she is just fine and she knows when she has to perform and when she doesn't.

.....The hospital had her tested for Down's when she was born and the first test came back negative and when they didn't believe the test they did it again and it came back inconclusive, so I feel that every medical professional that we go to is trying to find something wrong with her - looking for something wrong with her - to justify their results. Anyone else feel this? I keep saying that there is nothing wrong with this child, she is just developentally delayed by a few months but I'm just the mom, so what do I know??

You seem angry with the professionals you are dealing with, and that's OK, but I thought it might be helpful to point out that you are going back on forth on whether or not you think there is something significant going on with her.

As others have pointed out, with such a young child, it's impossible to know what the delays really mean, how significant they will end up being long term. Living with that Not Knowing is huge. For me, making peace with the Not Knowing has been a huge part of the path of raising a special needs child. (My DD is now 14 and is on the autism spectrum).

When we come to a junction in the road, have to make a choice about therapy, school, etc., it's so difficult because even with a diagnosis, it can be really hard to tell what is the next best step. Then, once those choices are made and we are trotting along for awhile, things are fine. But eventually, we come to another juncture and I go through many of the same feelings again.  

The advice I give to you is to try to just focus on the next step, to live in the moment each day, and to enjoy exactly where your little girl is right now. Enjoy the cute things she does. Take pictures. Write down happy memories. This is her toddlerhood, and while there are concerns and things you need to do and appointments to go to and therapies to get to and all of that, don't let it be the whole story of this phase of her life. Don't let the Not Knowing get in the way of enjoying her.

[SundayCrepes]

I am in a hurry so just glanced quickly at op and none of the following posts. I picked up a speech delay in our daughter when she was 12 months. She has been in speech therapy ever since. I do worry she will have dyslexia (her biological family has a history of speech delay and special ed for some subjects.) Since we homeschool I don't have to worry about her being stigmatized as "special ed" and I know she will get the services she needs. (A friend is a special ed teacher. One of her students needs a reading specialist. She is not allowed to tell the parents that because then the school will have to pay. This child will never read because he is in public school and not getting the help he needs.))

Anyway, a friend's son also had a speech delay but at 4 is past it. I ask her when he started talking. She said, "When we went gluten free." I figured that sounded easy enough so we tried her (and me, I'm still nursing her) gluten free. Three weeks later her speech took off. Her speech therapist was amazed at how much more focused she was in therapy. Then she got some pretzels she found on the ground at the park and we visited my parents for a week and it took me forever to find and hide all sources of gluten. Her speech seemed to backslide. Her speech therapist noted she wasn't as focused in their sessions. Another 4 weeks passed and her speech started progressing again and her therapist said she was more focused.

We don't know if it's related or not. Could all be coincidence (and selective observations on our part.) However, the fact that her speech has changed is right on. Beginning of March she was only saying one word utterances. She now says two words all the time and occassionally says 3 words together.

I'd say get her speech therapy and try a gluten free diet. I love being gluten free. It is so much healthier. I don't buy gluten free substitutes (bread, pretzels, etc.) I have discovered making tortillas out of mung beans and cooking with coconut four (there's a trick to it) and almond flour. Even if we discover her issue is not gluten, I will keep our house gluten free. If you'd like more info, please pm me. I have to go now.

[karne]

Originally Posted by SundayCrepes 

I am in a hurry so just glanced quickly at op and none of the following posts. I picked up a speech delay in our daughter when she was 12 months. She has been in speech therapy ever since. I do worry she will have dyslexia (her biological family has a history of speech delay and special ed for some subjects.) Since we homeschool I don't have to worry about her being stigmatized as "special ed" and I know she will get the services she needs. (A friend is a special ed teacher. One of her students needs a reading specialist. She is not allowed to tell the parents that because then the school will have to pay. This child will never read because he is in public school and not getting the help he needs.))

I would like to counter the idea of the stigma of special education, and also the sweeping generalization that the child referenced will not ever learn to read because she is in public school.  As the parent of a dyslexic child, I can assure you that our personal experience has been far from stigmatizing.  Many, many children receive services either through an IEP, 504, or regular classroom intervention.  Sometimes it is time limited, sometimes not.  Children across the spectrum of abilities receive services. LD's can occur in all segments of the student population. My personal experience is that the idea of stigma is often held by the parent, but less often by students because it's simply not that unusual to receive support, especially in the early/middle grades.  Children are educated in the least restictive setting possible, meaning many kids are in regular ed classrooms with support either in the classroom, or outside for a core area.  Depends upon what the child needs.  Esp. in the early years, it's not always obvious who has an IEP or 504.  I do think that this fear of what support or special education looks like today can hinder families from being open to what their child might need, or be eligible for, and that's a shame.  It would certainly be a shame to make an educational choice based solely on this idea, although I'm sure this is not your situation.

As for the idea of a child never learning to read because they are in PS; I really would struggle with that idea.  I'm not saying it doesn't happen, or hasn't been your experience, but I am hard pressed to see a child in elem or middle school day after day sitting in a class and not knowing how to read as the teachers simply pass it by with no identification and no assessment in the public school system.  It did happen in the expensive private school we attended, and I have since seen other students from that ideological framework who could not read, but that was a deliberate "they'll read when they're ready" approach-so someone knew, but didn't identify it as a problem.

Not to be on a soapbox, but I do feel passionately about this.

Op, my dd is an honor roll student now.  She got there with our support and the incredible work she did with special educators.  We took it all year by year. 

[SundayCrepes]

Originally Posted by karne 

As for the idea of a child never learning to read because they are in PS; I really would struggle with that idea.  I'm not saying it doesn't happen, or hasn't been your experience, but I am hard pressed to see a child in elem or middle school day after day sitting in a class and not knowing how to read as the teachers simply pass it by with no identification and no assessment in the public school system. 

Maybe you're lucky to live in a better school district. I live in a city of about 700,000 people. The spec ed teacher I referred to teaches at the high school level. The student who can't read because they need a reading specialist will graduate. Because he's special ed he can graduate even though he can't read. And yes, he has been passed on over and over again without getting the help he needs.

Another special ed teacher I know worked in the district office's special ed department. She quit because she could not stand that kids were not getting the services they needed. She said there were once four full time teachers that oversaw a specific group of kids. Three have quit and are not being replaced. She said it is impossible for the one remaining teacher to do the work previously done by four. (And even with the four teachers the kids weren't getting their needs met.)

Another teacher (regular classroom) said she was instructed by her principal to teach to the slowest child. When she and a few other teachers decided they needed to fail students who did not meet minimum requirements they were reprimanded by their principal (who had previously stated "No child will be failed.") I'm not into the pass/fail game. I think kids need to be allowed to learn at their own pace and not humiliated because they learn at a pace different from others. However, to send a child on to do work they are not ready for because of political reasons does not do a child any good.

[dmpmercury]

Mama don't panic yet. It is way to early to worry about whether or not she will need services in school based on her speech at 18 months. I'm surprised they even scored her so low with 8 words at 18 months. My ds qualified for EI at 19 months old and he was losing the word she had and maybe had one word at the time. His receptive language was also delayed at the time and that is what qualified him. He didn't talk much at all until 2 and then started adding words. Shortly after 2  he took off and by the time his year reevaluation came around he was caught up speech wise and exactly where he should be. When kids hit language explosions it can come on very fast. Both my kids went from saying barely anything to talking in sentences seemingly overnight. 2 word sentences is what they look for by age 2 not 18 months. It  is OK that other kids do it faster it does not necessarily mean much in the long run. It sounds like she can understand you and she was just shy during the assessment so I wouldn't worry yet. My ds's speech therapist said about half the kids do catch up. I definitely believe in EI and keeping an eye on things but you don't know what she will be like in school. 

[Linda on the move]

Originally Posted by karne 

LD's can occur in all segments of the student population. My personal experience is that the idea of stigma is often held by the parent, but less often by students because it's simply not that unusual to receive support, especially in the early/middle grades.  Children are educated in the least restictive setting possible, meaning many kids are in regular ed classrooms with support either in the classroom, or outside for a core area.  Depends upon what the child needs.

Yes, this post much closer reflects our experience with special education than the other post.

So many kids are in pullouts for so many reasons, half the time the kids can't even keep track of whose going to gifted enrichment vs speech vs talking to the counselor vs special education. It's not the same as it was back when we were kids. We had an AWESOME special ed teacher who worked with kids where they were. My DD was in sp. ed for one period of the day in 7th grade, and inspite of the fact that my DD most likely had the highest IQ in the room (not bragging, just saying) she still got exactly what she needed from the time. It was all very spelled out in her 504 Plan, and we had regular meetings with the sp. ed teacher and communicated via email. During regular school conferences, we meet with parents, ALL my DDs teachers, the school social worker, and my DD. It was great. Everyone was working together as a team.

I feel it is important to talk about the positive experiences we've had because moms are reading this and thinking about the future. Even in middle school, special education was well handled and extremely positive for my DD.

Homeschooling was fine for her when she was little, but not as she got older, and she would have failed (literally, Fs) without the extra help.

Edited by Linda on the move - 6/22/11 at 4:08pm