cancelled ei - aba therapy
luvmybaby28
member
I hope that I made the right move, but they said I could always get started again in the future if we feel that it would be a good fit for my lo.
For him at 17 months, I want him to just explore and be a baby, not rewarded with food for sitting and playing with a toy appropriately. He really likes to be on the move so I don't want to restrict his behavior because something might be wrong. I hope that I am not missing something here. I would feel so bad if he does end up getting a diagnosis of something that would have been helped by early aba therapy, I just don't see it being a good fit for him right now.
He does make great eye contact, babbles and has started saying single words, points at everything. He doesn't always respond to his name and went through a phase where he was very shy and lost it in certain situations, but that is seeming to go away. I hate to think that I am diagnosing him of something that is not there.
Re: cancelled ei - aba therapy
I am confused. If I am remembering correctly from my lurkerdom, you have no formal dx but EI was willing to offer you something like 4 hours of ABA a week? It seems sort of clear to me that they saw enough red flags to warrant 4 hours. I don't think they give out therapy like that for "something that is not there".
At the end of the day, you have to do what is right for your family and child. Therapy is not like a bunch of dog tricks kids learn for treats and this sentiment sort of cheezes me off. If this is how you feel about what can be gained through therapy, then I agree that you are probably not ready for it and your child would be better served by a "wait and see" approach.
I would at least ask for a copy of the EI assesments or the scores from the assesment tools they used. These will be handy in case you do revisit this someday with a developmental pedi or other medical professional. You will then have something that will give a jumping off point or at least a baseline of what others saw at 17 months.
I would be very hesitant to cancel any therapies unless you child is meeting or exceeding every developmental milestone in multiple settings without issue. If EI is willing to provide services, use them. Yes, it can be very difficult to watch your child receive them, but ABA is a data driven therapy-- if a program isn't working then they change it up, and if it is you can see data to support that.
This young age is so critical for brain development and plasticity. Some suggest that any issues can really be helped by early and intensive therapy at this age. Waiting can make any issues harder to deal with. Personally, I feel waiting is often a greater disservice than starting therapies early. Therapies do not harm a child, and I would much rather watch my child go through therapies he might not need than know I stopped something he might have benefited from.
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thanks for the replies ladies, I appreciate it. They came and picked up the toy bin today and said that they will email me a copy of the assessment. They said we are welcome back anytime.
I know that they saw red flags and this is why we were offered services, I guess he just seems so young to be forced to do something so structured and against what he is naturally inclined to do. I do not really know what typical 17 month behavior is like, except for the kids I see at the playground, but he happily plays at home and I don't want to mess with that. I will feel horrible if they later find something and say I should have started services earlier though, this is so hard.
My son is 4 and has been receiving services under the global developmental label since he was 4 years old. Are you receiving any other services? How long have you been receiving ABA? What are the flags that they saw that led them to recommend therapy? Are they the things that you say he is "naturally inclined to do?" Until I had a second child, I never realized how clearly the things that Z did (and didn't do) were so atypical. I've never regretted starting services when he was under 2. Frankly, I would never dream of pulling my son out of all therapy. If you are getting 4 hours a week, he will still have plenty of time to engage in unstructured activities.
If you are unhappy with ABA, I encourage you to explore other types of therapies to address your son's delays. We do Floortime with my son (following his lead while engaging in activities).
I sense the overall "vibe" of ABA is what is scaring you off a bit... I won't lie - I was terrified when DD's diagnosing doc prescribed 20+ hours of ABA a week... I pictured this drill sergeant "programming" my daughter to be this little robot. But given her dx (PDD-NOS at 22 months), I felt I didn't have the luxury of "waiting and seeing"... so I forged ahead, and I'm so glad I did. ABA (done properly) hardly even looks like therapy. Sure there's a lot of repetition and reward, but when you think about it, there's a lot of repetition in typical toddler play- this just allows it to be more targeted and beneficial. And the sooner the therapy begins, the better it is for the child. Plain and simple.
I'd really urge you to explore ABA a bit more to really understand how it works and what it looks like. ABA therapy ultimately formed the foundational building blocks for DD to eventually begin mastering other more advanced skills in a less structured setting.
Big Girl 2.7.06 ~ Baby Girl 9.2.07
Well said Glendi. I Was actually a little nervous about ABA too, and my husband was worried that it would change our sons personalities. What we have learned is that it will help bring out who they are, not change them. So far only one son has been getting ABA but he's slowly coming out of his shell. (DX ASD) The other son (DX PDD NOS/ASD) will start shortly. They will both attend an ABA school 2 hours a day. I was hesitant when I went to the school and after an hour of looking around I asked when they did the ABA part. The therapist laughed and said "this IS the ABA part!" It looked like structured play to me.
Instead of thinking of it as 'diagnosing' or 'labelling'; think of it as facilitating. Just like you facilitated his transition from milk to solids, from laying down to sitting, from crawling to walking.
Every single person in the world needs coaching in some manner or another in their life. The very best athletes in the world have coaches to help them perform. If your son needs help learning certain tasks, why restrict his ability to get that help?
The therapy can help you too. Having a therapist in your home is a great resource. You can ask questions, talk about things that maybe you are afraid to discuss with your family in a frank and objective manner.
DH and I felt the exact same way. When they told me that DS didn't play with toys appropriately at 18 months I laughed in their face and told them it was because he was so smart that he was finding new ways to play. Even though at the time we disagreed with the diagnosis, we very reluctantly and begrudgingly went along with EI services. I remember DS and I giggling that our son would be smarter than the other kids in kindy because he was getting all this free help from the school district early on. It became a lot more real when we had to put our screaming, crying son in a school bus at just 19 months old to go to a classroom based EI program. Everyone we talked to told us we were nuts- that we were forcing DS into a mold he didn't fit, he was too young for this, it wasn't fair to him to subject him to this rigorous therapy. But we stuck it out because we admitted to ourselves that while we didn't see a problem- the people (many, many people) who evaluated him had advanced degrees and decades of experience in this sort of thing. With therapy came so much progress in his speech and communication. And with time we started to see all of the stereotypical markers for ASD- the continued lack of eye contact, the explosive meltdowns, the inability to communicate with other children. By the age of 3 we were convinced the school district was right and we sought out a developmental pedi's opinion who confirmed it was PDD-NOS.
I just wanted to share my story because when I was in your shoes I felt the exact same way and I can sympathize. We were lucky in that we continued with EI services despite our hesitation, but only because our therapists were so amazingly wonderful. I don't know a lot about ABA (it isn't covered by our EI), but I've read that it can help any child with behavior. I don't think I could pass that up- but I understand where you're coming from.
I appreciate everyone taking time to reply to me here. I feel like I was really influenced by my parents who said I am crazy for seeking out ei to begin with, and that they feel so bad for my son because I am seeing him as less than perfect. I have read similar things on this board from other mothers whose parents and other family members don't get it.
I also guess that I didn't find the teacher to be that great with my son, but it was only one session so maybe I was too quick to judge. She had me leave the room and he was falling all over when I left, and I usually catch him with these types of falls, so I felt really uneasy with it all. It was also around our dinner time so me and h watched while my lo played with her, when this is usually the time he gets to play with him.
I also realize that he is definitely behind, but to what degree I really don't know. They said it really concerned them that they placed him in a bucket of balls and he wanted to get out, but didn't raise up his hands, but he always raises up his hands to me, just not that time. I guess I question the initial assessment and the last assessment that was done was entirely different, with such different questions so I am anxious to hear the results of that one.
I just want to give you a hug. It's a tough spot to be in. I was just there and it sucked.
My theory is that I'd rather get the services and determine they weren't necessary then not get them and determine they were needed.
Have they done a PT/OT assessment on him? Muscle tone and balance issues often accompany developmental delays, which may explain why your son is falling over a lot (I recall you posting on another board about him falling). I can count on my hand the number of times that my younger (typical thus far) son has fallen over where I needed to catch him since he became a skilled walker/climber. This is another thing they can work on in therapy.
One thing I have learned through my own journey is that I don't like people judging DS based on one one-hour session. Often I think, yeah but he does the desired behavior all the time at home! Or, umm, he can't walk over, get a toy and bring it back to me, because he can't walk!! How is that a fair assessment? And I have learned to just accept that I know he is doing a little better than what they saw on that particular day, but he still needs help overall.
On the flip side, I have also learned to accept what a whole lot of experts are seeing in my child. Just like taking a survey, if most people respond in the same way, then probably that is true. Note that I said "experts" as opposed to people who have an emotional stake in my child. My kid has been hospitalized numerous times for seizures and takes seizure meds and my dad has been known to say, "He doesn't have epilepsy!" You just can't put much stock in what family says, sometimes even when they have career experience with child development!
Also, I have learned not to judge the experts based on first impressions. DS' first special needs day care teacher at first seemed "not warm fuzzy enough" to me. I am so glad I gave her a chance because she was just what DS needed. We have to look past what we would emotionally like to happen, and shoot for what will benefit our LOs.
I know it is so hard. I was almost offended when we were first referred to EI. I thought it was for people suspected of bad parenting, and I was TICKED. But now I let the annoying parts roll off my back and accept the great parts that help DS.
It's so tough emotionally. I can imagine even tougher when it seems like your kid is completely physically healthy. What an emotional blow. Hang in there, and accept any help you can get. That way you know without a doubt your child can never say, "Why didn't you get this help for me?"
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We are in a whole new world here, hang in there. I'm about to have my first visits with the EI team, and I know it will be really hard. He's bright, and loving...but he does have his issues, and the whole point is to help him with his issues. We will all get there, won't we!?