Early Intervention

I just had both of my boys evaluated (Early Intervention) just over two years. The whole evaluation day was a nightmare- they were both really sick and out of sorts. The teachers didn't seem to care so much about that- but I think their health makes a huge impact on their behavior.

Anyway, they both have significant delays in their speech (about 5-10 words, no phrases) and I have been worrying about this... for what seems like forever! They are highly active boys, one more social than the other. So, I just got the report back, and they are all kinds of delayed, in several areas. They are suggesting OT and special ed therapy (not speech, yet???)

The whole thing is a little hard to take. I stay home with them twice a week and work the other three- they are with my parents on the other days. I keep thinking that I am responsible or something, they just don't get enough individual attention. I play with them, I read to them, they get outside of the house... I am exhausted on most days because they are so active and they have such trouble communicating.

Is anyone with me here or in a similar situation? Does it get easier when they start therapy? Does the therapy help? I need some positive thoughts here because I am just so down and worried about the entire situation.

 

:hug:

First off, do not feel responsible for this (I know that's easier said then done) but it's not your fault and it's not anything bad that they need therapy. :hug: EI will help them. My ds was in physical therapy up to a year and once I let go that it wasn't MY fault for him being there, it wasn't that bad. Please don't take the blame. :hug:

Good luck. :grouphug:

 

They told me the same thing, special ed therapy not speech. FIGHT IT! You have more power than you think! And can get what you want. Make a stink about it.

 

I have not been in your similar situation but I have friends who have been. I agree with Paula to definitely fight it and get the speech therapy. My BF had to be on top of EI to get the services that best benefited her son (he has Aspbergers, I might have spelled that wrong) and I can tell you once they worked out all the services, it is working out beautifully for him. I also agree with Liz not to blame yourself, I can understand that is easier said then done, you are getting them the help they need now, so please do not beat yourself up at all. :hug:

 

:hug: Don't beat yourself up!!! I felt like I was doing everything I could and yet my ds was/is delayed. He's been in EI for 6 months and has just soared! He's only in speech therapy, he was more then 75% delayed in speech.
I agree that you should fight for the therapy that you think would benefit him the most.
The therapists that come here and work with Jake are WONDERFUL and not only do they work with him but they work with me. They have taught me so much. I did all the things you did but they showed me how to help get that info to Jake. For example the first thing that really hit home for me was to ask Jake to bring me something and then wait 15 seconds for an answer or for him to do it. It takes at least 15 seconds for their brain to comprehend what we're asking, obviously this isn't all the time but it's amazing how much it helps my patience. I will ask him to stop doing something and count to 15 before I react... it usually works. I used to just ask over and over.

:hug: You'll get through this and so will they!!

 

my mother was the director of early childhood intervention here in east texas for years before she retired and i know that the program works! definitely get the right therapy that you feel your children need, but it's not your fault! the programs are very beneficial and sometimes children just need that nudge to get them going in the right direction.
hang in there!

 

First off, this is NOT your fault. :grouphug: My boys have been in EI for speech and developmental since they were about 18 months old. When they first were evaluated, Jake had a double ear infection and scored badly. Josh did even worse and she was very concerned. She did not come out and say it, but hinted he may have autism or a spectrum disorder. Two days later, he was also diagnosed with a double ear infection so yes, being sick will affect the outcome.

When I read this I had to laugh. My DH passed away when they were 8 months old. I'm a sahm and was told by EI that I spend TOO MUCH time with them and it was not healthy for them that they were around me 24/7. They told me a few times that if my DH were still alive it most likely would have been a different outcome. Gee...really? Talk about kicking me when I'm down. <_< We attend a playgroup once a week but that was not good enough because I was still with them. Babysitters in my area charge $20 per hour and I told them I can't afford to pay someone just so they have other people to interact with. I have since enrolled them in a Kid's Day Out program and they go once or twice a week depending on our schedule.

Fight for the speech therapy. When Josh was evaluated my main concern was that he would get super focused on something and could not transition to something else. I would have to say his name a few times to "snap him out of it". Both the speech and DT did not seem too concerned. Fast forward to October, all of a sudden the DT says he may have some sensory issues because he was hyperfocused. HELLO....I've been saying this for months now. :headbang: :headbang: So he gets evaluated for OT and sure enough he's delayed. So he's now getting speech, DT & OT weekly. When we had our meeting I told them I felt he should of been evaluated for OT a long time ago and felt someone dropped the ball. To this day I still feel if he had OT first, he'd be much further along.

They turned 2 last week so they've been in speech and DT for 6 months. It's been a very long, slow road. Jake has been doing really well and he's beginning to say more and more words. Josh on the other hand is getting better but is no where near Jake. I see him doing things that Jake did back in September so there is still a good 4 month delay between the two.


Hang in there. It's hard not to blame ourselves but at least we are taking the steps to do something about it.

 

:hug: i agree with everyone else - don't blame yourself! they are going to get the help they need & that means that you are doing your job. :hug:

 

I was thinking about your post on the way home and how I wanted to say how lucky your children are to have a mother like you! Seriously, they have been on this earth for just 25 months and you’re already getting them professional tutoring! You are giving them a huge opportunity before they face the world; MOST children do not get help early enough for those that need it.
And to address your concerns if was anything you did/didn’t do, I have to say with what I experienced with my girls there isn’t too much more I could’ve done to help or hinder their progress.

For example, one DD was walking at 13 months, she does sign-language, is up-to 7-8 words, masters puzzles, blocks, drawing, she knows all her body parts and is learning some Spanish from her nanny. Now my other DD does NONE of the above, she started walking at 18 months, maybe has two words if I exaggerate, doesn’t point to her parts or mom or dad. Other than playing and laughing she’s just not doing much (compared to her sister). I will have her evaluated but everyone keeps saying “she is just different”. I’m a first time parent so I’m not sure if her sister is normal and she is behind or if her sister is smart and she’s just normal! ardon:

The point is I treated them the same, the environment is the same and they are vastly different. I’m not sure I could’ve helped or hindered them from doing what they were ready to do and when.

 

My my boys have been in EI since they were 3 months old, they had both OT and PT at first, then after being in the program for 6 mos we decided the PT nurse only needed to come twice a month (they were coming once a week), we still have the OT coming once a week, and recently started the speech therapist back in december...Both boys are doing wonderful, the reason we have them is b/c since they were preemies, the hospital i had them at recommended EI just to help make sure they are not delayed in anything. We have another evaluation coming up in couple of weeks...

But just like all the other women said, it is NOT your fault, actually I am surprised they did an evaulation while your children were under the weather...they should have rescheduled, and the best time to have them come for an evaulation is 1st thing in the morning when the babies are at their most energetic, it helps them best to evaulate I feel...And i would advocate for the speech therapist as well considering their ages....

Both my boys are doing amazing, and am hoping they will not be needing EI much longer, but will continue as long as possible, it is really good for them and the nurses are amazing...Good Luck...keep at them, or try another EI if there is one...

Oh and i am a Stay at home mom, and have never been told i spent too much time with my boys..

 

:hug: really down about this but i would probably feel the same butlike everyone else has pointed out it is in noway your fault!! I can relate to your worries, we all naturally want the best for our children and it really hurts when your told they are not keeping up with there peers. My situation is a little different as we afre younger and it's Motor delays but just wanted to share that she has come on in LEAPS and BOUNDS since starting PT and i am glad it was finally picked up on as my little girl is alot happier since getting the extra help. I hope it works out for the best for you.

 

EI tried to pull the covers over me on this as well. By the way, I wanted to mention I am visiting from the 2-4 forum because my kiddos are 2.5 right now. They've been in EI since 6 months though. The time came, around 21 months, to add more services because of the speech delay. They already had OT and PT - PT was being discharged as they caught up there. They did the evaluation for SPEECH and tried to tell me that they were going to get special ed instead (DI). I made a huge stink about it and we finally agreed to have ST once per week and DI once per week as well. Actually, I have to say that DI is great, but I am glad they get speech too. We fully utilize what EI offers as my kids are very delayed in so many areas. I've had fights here and there and I usually get my way eventually. They know me well Just press on and try to get what you know they need. They will accommodate, or at least make a deal so to speak. Good luck!!

 

I think all parents feel like issues their kids have are somehow their fault. In the case of developmental delays, unless they have been locked in a closet,completely isolated from the world it is not your fault.I don't mean to sound flip, but it's true. The fact that you got them evaluated means you are a good,concerned parent. Please do not feel guilty or bad about anything going on with your children.

All that said, I refered my boys when they were 12 months old. Both were found to have significant delays, but Jacob was much worse than Nathan and Nathan only got one hour a week of Developmental therapy (called different things in different places). In our state, once they are evaluated, you have to wait 6 months to have them re-evaluated, so Nathan fell really far behind his twin. EI is a wonderful program, but it is a publically funded program and is subject to budget constraints and other government intervention. This means that sometimes kids don't get everything they need every time. You do have every right to ask for speech services.Your coordinator should be able to get a speech therapist to come out an do a speech eval. I do not know if you will have to wait like we did, but it is worth a phone call. Jacob received DT,OT and Speech from the get-go, and Nathan had to wait 6 months to get the same things Jacob had. During our years with EI, I requested speech evals, OT evals, and feeding therapy evals. We ended up getting 2 hours of speech/week, but it was after their 1 year evaluation. Jacob also received an extra hour/week of DT because he was still so far behind Nathan even though Nathan started later. I think it helped to have a sibling to compare with in our case! We were denied feeding therapy and feeding is still a huge issue, but we did what we could and took what we could get. I could not afford to offer additional therapies on my own because our insurance did not cover any therapies for autism in any way, period.

As for the actual therapies, the sooner a child gets help the better the outcome. it never hurts to have an evaluation, ever. Will therapy help you cope better? It might! Please ask your coordinator if there is a family support network in your area, this can help a great deal. Also participate in therapies as often as you can. Be there, watch what they do, talk to the therapists about everything. Some therapists are not as open to stuff and they will not deviate from the stated IFSP goals, but most will because they have experience and can help you develop skills to help your children while they aren't there. One thing that stopped a great deal of confustion and frustrations around here was a picture schedule for the boys. It's easy to make yourself, but any of the therapists can help with that. I'm not talking PECS (look it up, too much to explain), I am talking a picture schedule so the kids know what is next at all times at just a glance. I never thought anything so simple could make such a huge difference!! We have a medium sized piece of contruction paper (different color for each child) with 4 small strips of velcro in a vertical line. We then made up card with velcro on the back with pictures of things we do. Go to bed, get dressed, go to park, eat, diaper/potty, wash hands,play with toys,"special activity" ( for those things that we don't have a card for!), read books, etc. Then you place the appropriate cards in order top to bottom on the schedule. We tell the boys to check their schedule, the run over take off the card and do whatever it says! It's awesome! Now it took time to teach them how to use it, but I can't say how great it has been.

Okay, so I got off track a bit. The whole process will help you and them a great deal. I do have to admit, I hated every speech therapist we had and we had 5. None of them did a thing for my boys. Since they have graduated to the public preschool program, they have taken off in speech! The talk so much it's crazy! I was told early on that DT and OT will work on issues that could be delaying speech so they would not provide a speech therapist for the boys unless they made no progress in 6 months(they were re-evaluated every 6 months). That was BS in my opinion, but I had to wait the 6 months. Once they received their technical diagnosis, it was easier to get all the services we needed as well. So ask for speech, ask for anything and everything you think they need based on the testing. If they tested below where they actually perform, it is to your benefit, honestly. They should get more services! If I can help in any way, please let me know! You can PM me anytime.

Kelly

 

Push them for speech therapy... it's really really odd that they didn't say you qualify for it! Is there any way you could ask your pediatrician for a referral and look for a speech therapist on the side though?

About feeling guilty and everything... I'm right there with you. I'm a SAHM and my kids are delayed in speech as well (I don't even think they really have more than 3 words now that they say in the right context, AND they don't say it right) and it's impossible not to feel that it's your fault...

 

Im in the same boat with my 2yr Milo (singleton). You sounded JUST like me, but with 2 instead of 1. I was reading, and talking, and I take them EVERYWHERE, and he has 2 older siblings that talk to him. I just didn't' get it. And I to felt I had done something wrong. I even use to teach disabled children to talk, SO WHY COULDN'T I TEACH MY OWN CHILD!!!! It was SO frustrating. Milo has been in therapy and play group now for 4 months. I see a big improvement. I think in a lot of ways just being with other boys, in a different environment helped a lot. He is still struggling to talk, but there have been LOTS of improvements. I don't know why he needed a little extra encouragement, but he did.