Thursday, June 18, 2015

Early Intervention

When the girls were born at 33 weeks, we knew to expect developmental delays. We knew they wouldn't hit all the big milestones right when they would be expected to. Overall, they did better than I thought they would. They hit milestones slower than other kids their same (actual) age, but they didn't have any severe delays. They were both walking by 13 months. My cousin's full term singleton didn't walk until he was 18 months. I wasn't worried.

Recently, we did start to worry about their language development. They do say words and know several signs, but it still seemed like they should be doing more. As they approach their 2nd birthday, I look at other 2 year olds and they seem so much more advanced than Paige and Riley. I know kids change fast at this age, but there just seems to be such a huge gap. At their 18 month appointment, the pediatrician said on average they should have about 20 words. We were nowhere near that. The doctor wasn't worried because of them being preemies, but she still wanted to check in with us in a couple months to see if there was any improvement. We decided not to wait and looked into getting them evaluated. California has something called the Reg.ional Center. It provides services for individuals with developmental disabilities, including providing early intervention for babies and toddlers.

Several weeks ago we went through 3 separate evaluations.  The first was a speech therapist who basically just came over for less than an hour and interacted with the girls and gave them different toys to play with all while taking notes on their behavior and communication. The 2nd person came over and asked SH and me a million questions about the girls but didn't specifically do anything to evaluate the girls. The last person was an Occupational Therapist. She did a standardized test to evaluate their overall development. It's all play based, but it's a weird thing to test such young kids. They obviously have no idea they are being tested so have no incentive to show all their abilities. While they were friendly and social to everyone who came over, they didn't say anything out of their admittedly limited vocabulary. The final testing was long and they got tired and restless by the end. It was close to lunch. So they didn't succeed at all the tasks even though they were things I knew they could do. I think you have to take the results of this kind of stuff with a grain of salt. I think they paint a good general picture, but might not be exactly accurate.

We finally got the results and recommendations a couple of days ago. In social/emotional development they score above their age (yay!). In cognitive development they test a couple months behind (not too terrible). However, in language they have a severe delay. Riley was put at a 9-12 month level in expressive language. Paige was at 12-15 months. They were 20 months old at the time of the test. Obviously, I know they are delayed which is why I asked for the evaluation, but it's much more severe than I thought. They did better at receptive language. They understand a whole lot more than they are able to communicate. They are recommending speech therapy twice a week and cognitive therapy once a week to help with their fine motor skills. That's a lot.

The complicated part of this is that SH, who has been the stay-at-home dad all this time, was set to go back to work in July. The girls were going to start daycare full time. But now, that might not happen. He may need to postpone going back to work for the next 6 months and manage all these appointments. They go to a very small, in-home daycare. Even though the speech therapist will go to wherever the kids are, I just don't think there is any space for something like this. Another option is getting a nanny. Then the girls would be at home and the therapists could go there. But, nannies for twins are expensive and the cost would eat up all of SH's take home pay. Then there isn't much point in him working, right?

The logistics of the appointments and working and daycare is worrying me more than the speech delay, to be honest. I know that Paige and Riley will be fine. I know there will come a day when they are asking millions of inane questions and I will wonder why I was in such a rush for them to talk. In the meantime, I have to figure out their suddenly very busy schedule.

16 comments:

  1. My child wasn't a preemie, but she was also speech delayed. She had maybe 2 words at 18 mo. We started speech therapy at 19 mo and did it 1x week until she was 28 mo. She had a language explosion at about 24-25 mo and just kept going Now she is more than caught up and quite a sophisticated talker at 4.5. Hang in there, hopefully the same will be true for your kids.

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  2. This post is so good for me to read! I'm constantly in a state of worry over my 33 workers. I know they will be fine. I know they will catch up, but it's hard not to compare. The thought of all of those appointments is so daunting!! I know you'll figure it out and perhaps before long they won't even need the additional services anymore! Keep us posted!!

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    1. Ugh auto correct! Workers should be weekers :)

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    2. But it kind of made me giggle :)

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    3. So ironic that you, Aubrey, and I all had 33 "workers." I think I could also write a post very similar to this. My two are very behind in language skills. Ayden doesn't really have any words, and Rylee has only a few. They both talk and jibber jabber, but that's not the same as applying actual words to things

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  3. M's mom actually warned me that M himself was a delayed talker, hardly speaking at all until he was almost two years old and then all of a sudden just bursting out in virtually complete sentences. It's good to know just in case Q follows suit. She had taken him to the doctor and was on the verge of seeing a speech pathologist. Her doctor's explanation? "The service is too good", meaning she was anticipating his needs and he never needed to ask for anything. Whatever happens, you're absolutely right and the girls will be fine, but it is stressful to try to organize everything.

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  4. I could have written a lot of this myself. My girls were not preemies, but one of the twins has very limited language, both expressive and receptive. She says "mama", "dada", "up" and that's about it. She babbles, but is clearly behind for a 19-month-old. Her sister, on the other hand, is a constant chatterbox, so it wasn't too hard to see the differences in the two. As a clinical social worker, I was aware of the early intervention program, but I was also kind of in denial that "my kid" needed it. When we went to her 15-month appointment, her physician suggested we pursue EI because as she explained, it can only help, not hurt. We got her involved about three months ago for speech and OT. Like your girls, I think she only qualified for OT because she was so exhausted by the end of the evaluation that she just stopped cooperating with their "tests". In fact, we just moved across the country and had our intake with the EI program here. Her new service coordinator said after observing her that she would recommend focusing our services solely on speech, and only reintroduce OT if it became an issue later. All that to say, if it's any comfort at all, the growth I have seen in my daughter in three short months has been astronomical! I'm so thankful I got them involved. While her expressive language has not improved drastically, she is now signing "more" and "all done," and she's mimicking facial gestures (smiles), playing peek-a-boo, and interacting more with her siblings. It's like she's suddenly awakened to the world around her, and the fact that she's supposed to be an active participant. :) Also, I wouldn't automatically discount the daycare. I stay home with my girls and my son, who just turned four. Our therapists said it was actually helpful to have the other kids in the room, as they got a chance to also gauge how she was interacting with her peers, not just me. Anyway, sorry for the novel, but I just wanted to let you know I can relate. :)

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  5. I don't have any advice, but I am so glad you are getting on top of this. Wishing you and those babies lots of luck and love as they have these appointments!

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  6. I think it's great that you are so on the ball with this. I am sure the girls are going to be absolutely fine, but a little extra help is great too. I hope you are able to figure out the logistics and that everything works out smoothly.

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  7. I think it's great that you are so on the ball with this. I am sure the girls are going to be absolutely fine, but a little extra help is great too. I hope you are able to figure out the logistics and that everything works out smoothly.

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  8. I think it's great that you are so on the ball with this. I am sure the girls are going to be absolutely fine, but a little extra help is great too. I hope you are able to figure out the logistics and that everything works out smoothly.

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  9. This seems to be such a typical thing for preemies. My friend's 31 weekers both needed speech therapy (and tubes because of frequent ear infections)- now they talk up a storm! Have you talked to the in-home daycare to see if they could set aside a room for an hour (or however long the appts take)? Frankly the daycare provider might find it nice to be paid for watching the girls but not having to watch them for an hour! :-)

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  10. I don't know what your experience has been like or how things work in California, but I worked in EI in another state, and parents always had a say in which services they received, as well as the frequency. In most cases, the most frequent we would offer any one service was once a week because the whole idea was to incorporate strategies into the family's daily routines and activities, rather than doing "therapy." Maybe you could talk with your service coordinator to see if you can schedule services in a way that works better for your family. You're absolutely right that the girls will likely catch up eventually, but a little help never hurts!

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  11. I noticed that my cousin's son was speech delayed at age 2, but everyone was down-playing it. "Oh boys talk late". I also noticed that his family was still taking to him in baby talk and didn't seem to make much of an effort to encourage his speech. By the age of 3, I saw him with other kids around his age, and the delay was so profound. He didn't exhibit much purposeful speech and seemed to just babble random sounds. He was dismissed from one pre-school (everyone blamed the teacher) and they may have to take him out of a second one. Almost 5 years old, my cousin now sees that he's not ready for kindergarden and will hold him back a year. They're finally having him evaluated for possible hearing causes, ADHD (I think he may be on the autism specturm) and are taking him to a special socal skills class. I just hope it's not all too late. Good for you for being on the ball and taking charge!

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  12. That's tough, Jen. I hope it all works out and the speech therapy helps to get them up to speed.

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  13. My child tested a bit behind with some of her developments. I was happy though, that we had the resources available to us to not only have the testing done (free of charge) but we also were able to enroll our daughter in a variety of therapies to try and catch her up. She is now in first grade and is doing beautifully!

    Brendon Hudgins @ Medcare Pediatric Group

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