Early Intervention

So this past week my boys had an in-home evaluation for our local early intervention program. Now I'm wishing I had called earlier as they said that both Andy and Will qualify because they both have a more than 25% developmental delay in adaptive behavior skills. I knew things were just not quite right lately, but we do go to regular visits to a developmental clinic recommended from the hospital they boys were at during their NICU stay. The clinic is pretty much were most preemies go for development progress reports in town. We just had a visit at the clinic two months ago and they boys got glowing reports from the developmental therapist and doc there, but I had several questions at the end of the appointment that they both just pretty much shrugged off and said that the boys were too young to start worrying about these kinds of problems <_< In fact, as I asked the doc about Will's apparent complete lack of speech and a few other concerns I had about his overreaction to certain stimulus and weird sensory reactions, he had the nerve to tell me that I must already have a diagnosis for Will made And that he wouldn't worry about that kind of stuff until well after 18 months.

I was so disappointed about the lack of help from that appointment, that I immediately called early intervention, and am I glad that I did. They came and observed both boys and immediately picked up that there were serious delays in their cognitive and adaptive skills. Andy and Will have had serious feeding issues and not until the past month or so have we even been able to get them to eat smooth baby food purees. They were still having nothing but bottles until now. Now I am able to get about 1/2 jar of fruit or something mild and sweet in them, and that's been a huge step. They can't take a sippy cup...I've tried a billion types and a billion different ways to introduce them to the boys. They can't feed themselves or even try to imitate trying to use a spoon or any other type of utensil (they don't try to imitate anything we do like brushing hair, etc.) They still don't try to stack toys, they don't try to put smaller toys inside bins or bowls, they don't follow most simple commands other than maybe a small handful of things like giving hugs or responding to 'no'. The early intervention folks said that in theory, they were probably at about the 8 to 9 month old stage of adaptive skills or maybe even younger. Talk about feeling sooooo guilty! I feel like a horrible parent for letting things get to this stage. I don't know what I could have been doing other than what I've already done, but I still feel so guilty for all of this

Does anyone else out there have similar experiences or any experiences with early intervention and if so, are you happy with the help you're getting? What kinds of things did EI do to help? What kinds of questions should I ask EI that I may not have already thought of? Any and all advice is welcome as I feel so lost in all of this. I am hopeful that we will make some improvements, but I am still feeling so overwhelmed by it all :drown:

 

By the way, Andy and Will were born 3 months early at 28 weeks (weighing 2 lbs., 3 oz. [Will] and 2 lbs., 15 oz. [Andy]), so their actual age is 16 1/2 months, but their adjusted age is 13 1/2 months....just in case anyone was wondering why I had my concerns early on....I knew being so premature, they had a high chance of facing delays later on.....

 

:hug: Don't feel bad!!!

Being that they are 13.5 month, they don't seem that behind to me ardon: The food texture thing is definately something that EI can work on but the things you mentioned my 16 month old can't do and he was just evaluated and was a tiny bit behind but not much. He can't stack, put things in a bowl/pail, or use a spoon or fork properly/at all! He has no idea what "no" means and has very few words.

At a 13 months my twins were the same way, so I wouldn't stress, and dont beat yourself up!
If they qualify for EI then they will get excellent help!

 

Mine are 15 months and I just do finger foods. They just try to play with the utensil and make a mess. Good Luck. Also, don't feel guilty. Good for you for realizing something was not right and taking a step past your Dr. when he ignored your concerns.

 

28 weeks is significantly premature, and you really should use their adjusted age. Don't beat yourself up over "coulda, woulda, shoulda", that is in the past. What you need to do is move forward, and you are with the EI help! FWIW, I had Jon evaluated by EI at 20 months, he just missed qualifying. When he was being placed into the preschool disabled program at 3 1/2 years, the comment from the teacher, was "why didn't I get this child when he turned 3", so even being on top of something doesn't mean you get them in right away!

Good luck!

 

I wish I had advice for you on the EI part but we are waiting for evaluations ourselves. I would love to hear what you go through throughout this process.

I will tell you that what I've heard as far as what to expect, what services, etc. vary by state. I'm in California and they've done significant cutbacks. The good news is your twins qualified and they will be getting help, now.

You should not feel bad. You were doing what you thought was right. And, a lot of times kids won't even be *looked* at for help until 1.5 or two. EI in California doesn't even look at certain things until they are 1.5. And many Dr.s are old-school and say 'don't worry about certain things' until a chlld is 2. Newer research is different than the older school of thinking (earlier they get help the more positive gains possible, etc.) but there are still many Drs. out there who stll go by the old way of thinking... because often times a diagnosis can;t be made until certain ages based on diagnostic tools.

However, one thing I have heard *in general* is for some programs kids won't qualify for all of the services they need unless they have some sort of formal diagnosis. Which I don't see happening at their young age and due to the fact that they are preemies. If you suspect that there might be some significant diagnosis other than delay due to prematurity that would be going on (I really don't think there is based on what you've described, just mentioning becuase I think you shoudl go with your parent's intuition) keep pushing for other opinions and develomental pediatricians, etc. to look at them. That is a big *if*... I dont think it's necessary but just mentioning what you can do *if* you think enough isn't being done.

 

Don't feel bad! As a mother you do what you think is best and you did - and now you can get a little extra help you need for your babies. With them being so early they have special needs and I'm sure you can get the help you need.

I also waited to get therapy for my boys. Their ped suggested physical therapy for walking and low muscle tone at 12 months. I thought that was so early since most milestone guidelines state normal is up to 18 months and really just wanted to give them some time. She got on me again for not taking them at their 16 month appointment but there was a several month wait for physical therapy anyway so we wouldn't have been seen by that time regardless. By the time we got in for the eval at 17 months, one twin was already walking, and two weeks later is now RUNNING, and the second twin got inserts for his shoes (still no PT, still waiting!) and has just started to walk all by himself just shy of 18 months.

However, they are not talking at all either and I am concerned about that but here speech therapists wont even put them on the list until 18 months and they told me there is a 4-5 month back up so we ended up at EI and just finished our formal eval last week. They will definitely qualify for speech therapy through EI and she also noticed some cognitive delays but was unsure about their qualification level. We go back in a few weeks for the results. I really think EI is going to make a big difference and a few people I have met lately that also used EI for their babies praised EI for helping immensely.

 

Thanks for all the responses. Sounds like alot of you guys are in a similar situation as us. This whole developmental delay diagnosis thing is so frustrating to parents. We want to know what's going on with our kids and though we may not have the academic degree to be able to make a professional decision about what needs to happen, we still spend just about every waking moment with these little growing people and we feel like we know when to be concerned and when not to be. I hate that standards still exist today to wait until a child is 18 months or even 2 years old before evaluating and treating any kind of delay. Babies grow so fast and are such sponges, that to keep a delay going, even at such an early age seems so counter-productive to me.

That all being said, I am still kind of confused as to where exactly Andy and Will measure in their cognitive delays in comparison to the set 'standards' for kids at their adjusted age. The early intervention folks that came to evaluate them expressed to me that they considered their delay to be 'significant'. But I have friends and family members with kids around their same age that still aren't doing some of the things that we all think they should be doing. It leaves me wondering if going through all kinds of occupational therapy, etc. will we be pushing my boys too much. They can walk and move around, and their motor functions are just fine. Andy is a little blabbermouth and is even saying two syllable words like 'backpack' (he's a bit of a Dora fan ) But Will won't saying anything except 'mama'. They understand a few simple commands like giving hugs and kisses. They have even learned recently that when I say 'gate's open', they know that means they can roam around the house free and they come running

I know I'll find out more later this week when we sit down with the EI folks and formulate a formal game plan. Maybe then I'll feel a little more settled in what needs to happen then, and hopefully EI will be just what we have been needing through all of this confusion. I'll keep you guys posted on what happens. I know above all, I will welcome any help they can give me to get this kids to eat. I am so tired of making piles of bottles every day

 

Ditto!

And.... haven't experienced this yet, but I think when they say 'significant' it is different than when a Dr. says it. I think when a Dr. says something it is in medical terms, etc.... I think for EI it is just on terms of whether or not they qualify. You may want to ask them specifics.... you will probably get a better answer then.

 

also...As an early childhood special educator...I truly feel that preemies (and especially twins) march to the beat of their own drum. That includes "milestones: I have had many sets of twins come through that had "significant delays at 18 months...but by 5 were fine. Get the help, but try not to worry !