Testings, Therapies, and other Adventures
So...I've been MIA for awhile...but with good reason...
One of my daughters has been having some issues (the biggest of which was her speech at the time). We brought it up at an appointment with our pediatrician in February...who then suggested we contact the school district and/or look into speech therapy for her.
We started this long process by contacting the school district...who contacted us back some time in March. First, they had us in to check her vision and hearing (both were normal). Then, a few weeks later, we went in for her initial placement testing. They found that she's not behind cognitively, but was/is having speech issues that they'd be willing to provide services for. The only problem...she'd have to be in preschool 4 times/week to get the services.
Now, some of you might say, "Just put her in the preschool."...but, to me, that was a last resort. I already homeschool my oldest two children...and enjoy doing so. I like watching them learn new things...and showing them the joy in learning. I like not having to worry about them being bullied (my older two are Celiac with other food issues...and both are slightly small for their ages as a result. Plus, they're a bit dorky at times (just proving that they are MY children. lol)). I like that they enjoy being together as a family. Etc.
Putting her into a preschool situation would cause more issues than I was ready to deal with. My oldest two would wonder why they couldn't go to school (they've always been homeschooled...so have no idea what regular schooling would be like). My daughter isn't good at changes in routine...so the initial transition, at least, would've been extremely unpleasant as she'd have to get used to the new routine. I'd then have to change everyone else's routines as well in order to accommodate and make time for the dropping off/picking up from school. Plus, she wasn't behind cognitively. She knows how to read/write her ABCs, knows what sounds they each make, she can spell and write her name, she can count to 20 and knows most basic shapes, etc. I'd be putting her in the school JUST to get the speech services.
...and I also didn't particularly feel that the "benefits" they were offering were worth it for us. They wanted my child to attend preschool 4 times/week because her speech was/is delayed...but then, she'd only actually see the school's speech therapist twice/week (if that...they could only guarantee once/week...but said they'd try 2 most weeks). ...and the "sessions" would only be for 20 minutes/day each time...and in a group session (not one-on-one) for most of that time. Her one-on-one time (assuming they were able to do twice/week), would only be about 10 minutes every week. To me, that just doesn't cut it. Tell me what to do and I can easily do it at home as often/much as she needs it. Considering that, at the time, there were only about 6-7 weeks of the school year left...and that my daughter's issues weren't severe enough for her to qualify for sessions over the summer break, we decided to forgo preschool and the district's offer for services...at least for now.
An added concern for us was that we felt something else was going on as well. While waiting for all this to happen (the school took several weeks between each appointment), I'd started doing some reading/research at my local library. I'd started with speech disorders...which led me to sensory processing disorder...which then led me to reading about autism. I decided to ask the people testing my child through the school district if they had any sort of test for autism (which they let me fill out...though they said they can't officially diagnosis autism)...and, indeed, my child had many of the behaviors that would make her "at risk".
So...after the IEP session where we discussed what the school could/would do and we decided that wasn't worth it for us, we pursued speech therapy through our medical insurance (which we would've had to do over the summer when school was out anyway). We also set up an appointment to have her evaluated for autism...which, if you've never done, those appointments take FOREVER to get into.
So...our speech therapy evaluation came first. They concluded that my daughter has MERLD (Mixed Expressive-Receptive Language Disorder)...which means that she has issues both with hearing/interpreting things that are said to her and with expressing the things she wants/needs. A stipulation of the MERLD diagnosis is that the child is NOT autistic...which the speech people couldn't say, so, until we could get the autism testing done, she had a diagnosis of MERLD. They then suggested we start speech therapy 2 times/month (an hour each time and one-on-one)...with me getting "homework" to do with her daily between appointments (so most of the teaching comes from me...which we do daily). As for how that's going, it's still a bit early to tell....though we have seen some improvement already. So...I'm hopeful.
As for the autism diagnosis, I'd called multiple places to have her evaluated. The first place I called had an opening in July...and I had them put me on the list to call in case there were any cancellations for earlier. Several of the other places I called were just as long of a wait...and then I found a place that had an opening in May. It was about a 40 minute drive away...but I was fine with that. So...we went. My daughter was having a particularly good day that day...and I wasn't able to sit in on the interview with her...so I'm unsure exactly what my daughter said/did...but I assume it wasn't anything too crazy as, again, she was having a really good day. While my daughter was being tested, I was given a list of about 200 questions to answer about her behaviors at home. When the interview with my daughter was over, the psychologist called me in to discuss it a bit. She said that while my daughter did show some autistic behaviors, she felt like she was social enough to not be considered autistic. When I got the final report (which included everything I'd filled out as well), the inventories I filled out said that her results were consistent with someone on the autism spectrum. ...but, again, because my daughter did well during the interview with the psychologist (which, even then, my daughter scored a 6 and the autism spectrum disorders started at a score of 7), the psychologist concluded that she wasn't on the spectrum. She didn't seem to take into account anything I'd reported happens at home in her final decision. It was all based on her own observations in the hour or so she sat with my daughter. She suggested that my daughter's possibly ADHD instead (which, I'll admit, she does have some of the behaviors for...but I feel they'd be better explained with an autism diagnosis (or possibly both)...as she has other behaviors that are definitely more ASD than ADHD).
Immediately after getting the official report from the first psychologist (seriously, the next day), we got a call from our initial appointment we'd made for July (which I'd never cancelled)...saying that they'd had a cancellation and that we could have it if we wanted for that upcoming Friday. My husband and I talked it over and decided we'd prefer to get a second opinion since she was so close (6 instead of 7) on the first testing...and that the official report didn't seem to take into account the behaviors she exhibits at home. I felt like with things being that close, my own observations should've mattered more...and that, if the second person agreed with the first, I'd feel more confident that that was indeed the case (and be more willing to drop it then).
I also wanted to get the second opinion because the person we'd see this time around was one of the top people in the state, had won multiple awards for her work with autism, had multiple children on the spectrum herself, and had dealt more with girls on the spectrum (which, in case you didn't know there's a difference in the presentation of autism between boys and girls...there is... http://www.scientificamerican.com/article/autism-it-s-different-in-girls/).
So...we went. I was able to sit in while my daughter was interviewed this time...though I was told not to talk (which was hard...but doable). Sitting there, I felt like she did do well on certain things (was talkative, did okay with eye contact, etc.)...but she was also awkward in other things (social reciprocity, wanting to repeat certain actions/play over and over instead of moving on, etc.)...and I just hoped that the interviewer was picking up on them as well.
After my daughter's interview, I had to drop her off at home and come back for my own interview (to talk about her general behaviors at home...and discuss family histories, etc.)....which, I did. When everything was over (several hours later), I asked what the interviewer thought. She said that she felt pretty confident that my daughter was indeed on the spectrum...and that her severity would be moderate to high...though she'd be considered high functioning (Level 1). We have multiple people in our family (both mine and my husband's sides) who have already been diagnosed as on the spectrum (both high-functioning and not)...so getting the diagnosis itself wasn't a problem or worry I had. I just wanted someone to see what I'd been seeing...and be able to tell me if it was or wasn't autism.
If anything, I felt relief. Finally, I had some answers. Someone saw what I deal with every day and was able to help me figure out how to approach it. I now had an answer that would help me figure out the best and most efficient way to deal with things. I cried on the way home...not out of sadness...but out of joy. Joy for not feeling like I'm crazy or imagining things. Joy for having a definite direction in which to pursue answers. Joy that my daughter acted like her normal self that day.
...and, during all these other testings, we'd started speech therapy. At our first appointment, our therapist suggested we have my daughter evaluated for occupational therapy as well. ...which, honestly, was fine with me since I knew that if she did end up getting an autism diagnosis, occupational therapy and speech therapy would be the only options available to her through our insurance since our insurance doesn't currently cover ABA (Applied Behavior Analysis) therapy.
We finally had our occupational therapy evaluation this morning. ...and it went about how I thought it would. Developmentally (as far as motor skills and such go), my daughter is not behind her peers. However, she does show problems with sensory integration and sensory processing (which is not surprising, as autistics usually do have issues with those). So, once the insurance approves that, we'll start therapy 2 times/month for that as well. In the meantime, the therapist gave us some information to help with meltdowns and different things we can do at home to help improve her dexterity (for one, she holds pencils incorrectly no matter how many times I correct it).
So...we're getting there. We've got a plan in place. After almost 4 months of waiting (which could've been a lot worse, I know), I feel like we finally have a grasp on all (or most) of her issues...and have (at the very least) a direction on where to go from here. It's been a very long and stressful process...with definite ups and downs along the way, but I finally feel like we're headed in the right direction.
One of my daughters has been having some issues (the biggest of which was her speech at the time). We brought it up at an appointment with our pediatrician in February...who then suggested we contact the school district and/or look into speech therapy for her.
We started this long process by contacting the school district...who contacted us back some time in March. First, they had us in to check her vision and hearing (both were normal). Then, a few weeks later, we went in for her initial placement testing. They found that she's not behind cognitively, but was/is having speech issues that they'd be willing to provide services for. The only problem...she'd have to be in preschool 4 times/week to get the services.
Now, some of you might say, "Just put her in the preschool."...but, to me, that was a last resort. I already homeschool my oldest two children...and enjoy doing so. I like watching them learn new things...and showing them the joy in learning. I like not having to worry about them being bullied (my older two are Celiac with other food issues...and both are slightly small for their ages as a result. Plus, they're a bit dorky at times (just proving that they are MY children. lol)). I like that they enjoy being together as a family. Etc.
Putting her into a preschool situation would cause more issues than I was ready to deal with. My oldest two would wonder why they couldn't go to school (they've always been homeschooled...so have no idea what regular schooling would be like). My daughter isn't good at changes in routine...so the initial transition, at least, would've been extremely unpleasant as she'd have to get used to the new routine. I'd then have to change everyone else's routines as well in order to accommodate and make time for the dropping off/picking up from school. Plus, she wasn't behind cognitively. She knows how to read/write her ABCs, knows what sounds they each make, she can spell and write her name, she can count to 20 and knows most basic shapes, etc. I'd be putting her in the school JUST to get the speech services.
...and I also didn't particularly feel that the "benefits" they were offering were worth it for us. They wanted my child to attend preschool 4 times/week because her speech was/is delayed...but then, she'd only actually see the school's speech therapist twice/week (if that...they could only guarantee once/week...but said they'd try 2 most weeks). ...and the "sessions" would only be for 20 minutes/day each time...and in a group session (not one-on-one) for most of that time. Her one-on-one time (assuming they were able to do twice/week), would only be about 10 minutes every week. To me, that just doesn't cut it. Tell me what to do and I can easily do it at home as often/much as she needs it. Considering that, at the time, there were only about 6-7 weeks of the school year left...and that my daughter's issues weren't severe enough for her to qualify for sessions over the summer break, we decided to forgo preschool and the district's offer for services...at least for now.
An added concern for us was that we felt something else was going on as well. While waiting for all this to happen (the school took several weeks between each appointment), I'd started doing some reading/research at my local library. I'd started with speech disorders...which led me to sensory processing disorder...which then led me to reading about autism. I decided to ask the people testing my child through the school district if they had any sort of test for autism (which they let me fill out...though they said they can't officially diagnosis autism)...and, indeed, my child had many of the behaviors that would make her "at risk".
So...after the IEP session where we discussed what the school could/would do and we decided that wasn't worth it for us, we pursued speech therapy through our medical insurance (which we would've had to do over the summer when school was out anyway). We also set up an appointment to have her evaluated for autism...which, if you've never done, those appointments take FOREVER to get into.
So...our speech therapy evaluation came first. They concluded that my daughter has MERLD (Mixed Expressive-Receptive Language Disorder)...which means that she has issues both with hearing/interpreting things that are said to her and with expressing the things she wants/needs. A stipulation of the MERLD diagnosis is that the child is NOT autistic...which the speech people couldn't say, so, until we could get the autism testing done, she had a diagnosis of MERLD. They then suggested we start speech therapy 2 times/month (an hour each time and one-on-one)...with me getting "homework" to do with her daily between appointments (so most of the teaching comes from me...which we do daily). As for how that's going, it's still a bit early to tell....though we have seen some improvement already. So...I'm hopeful.
As for the autism diagnosis, I'd called multiple places to have her evaluated. The first place I called had an opening in July...and I had them put me on the list to call in case there were any cancellations for earlier. Several of the other places I called were just as long of a wait...and then I found a place that had an opening in May. It was about a 40 minute drive away...but I was fine with that. So...we went. My daughter was having a particularly good day that day...and I wasn't able to sit in on the interview with her...so I'm unsure exactly what my daughter said/did...but I assume it wasn't anything too crazy as, again, she was having a really good day. While my daughter was being tested, I was given a list of about 200 questions to answer about her behaviors at home. When the interview with my daughter was over, the psychologist called me in to discuss it a bit. She said that while my daughter did show some autistic behaviors, she felt like she was social enough to not be considered autistic. When I got the final report (which included everything I'd filled out as well), the inventories I filled out said that her results were consistent with someone on the autism spectrum. ...but, again, because my daughter did well during the interview with the psychologist (which, even then, my daughter scored a 6 and the autism spectrum disorders started at a score of 7), the psychologist concluded that she wasn't on the spectrum. She didn't seem to take into account anything I'd reported happens at home in her final decision. It was all based on her own observations in the hour or so she sat with my daughter. She suggested that my daughter's possibly ADHD instead (which, I'll admit, she does have some of the behaviors for...but I feel they'd be better explained with an autism diagnosis (or possibly both)...as she has other behaviors that are definitely more ASD than ADHD).
Immediately after getting the official report from the first psychologist (seriously, the next day), we got a call from our initial appointment we'd made for July (which I'd never cancelled)...saying that they'd had a cancellation and that we could have it if we wanted for that upcoming Friday. My husband and I talked it over and decided we'd prefer to get a second opinion since she was so close (6 instead of 7) on the first testing...and that the official report didn't seem to take into account the behaviors she exhibits at home. I felt like with things being that close, my own observations should've mattered more...and that, if the second person agreed with the first, I'd feel more confident that that was indeed the case (and be more willing to drop it then).
I also wanted to get the second opinion because the person we'd see this time around was one of the top people in the state, had won multiple awards for her work with autism, had multiple children on the spectrum herself, and had dealt more with girls on the spectrum (which, in case you didn't know there's a difference in the presentation of autism between boys and girls...there is... http://www.scientificamerican.com/article/autism-it-s-different-in-girls/).
So...we went. I was able to sit in while my daughter was interviewed this time...though I was told not to talk (which was hard...but doable). Sitting there, I felt like she did do well on certain things (was talkative, did okay with eye contact, etc.)...but she was also awkward in other things (social reciprocity, wanting to repeat certain actions/play over and over instead of moving on, etc.)...and I just hoped that the interviewer was picking up on them as well.
After my daughter's interview, I had to drop her off at home and come back for my own interview (to talk about her general behaviors at home...and discuss family histories, etc.)....which, I did. When everything was over (several hours later), I asked what the interviewer thought. She said that she felt pretty confident that my daughter was indeed on the spectrum...and that her severity would be moderate to high...though she'd be considered high functioning (Level 1). We have multiple people in our family (both mine and my husband's sides) who have already been diagnosed as on the spectrum (both high-functioning and not)...so getting the diagnosis itself wasn't a problem or worry I had. I just wanted someone to see what I'd been seeing...and be able to tell me if it was or wasn't autism.
If anything, I felt relief. Finally, I had some answers. Someone saw what I deal with every day and was able to help me figure out how to approach it. I now had an answer that would help me figure out the best and most efficient way to deal with things. I cried on the way home...not out of sadness...but out of joy. Joy for not feeling like I'm crazy or imagining things. Joy for having a definite direction in which to pursue answers. Joy that my daughter acted like her normal self that day.
...and, during all these other testings, we'd started speech therapy. At our first appointment, our therapist suggested we have my daughter evaluated for occupational therapy as well. ...which, honestly, was fine with me since I knew that if she did end up getting an autism diagnosis, occupational therapy and speech therapy would be the only options available to her through our insurance since our insurance doesn't currently cover ABA (Applied Behavior Analysis) therapy.
So...we're getting there. We've got a plan in place. After almost 4 months of waiting (which could've been a lot worse, I know), I feel like we finally have a grasp on all (or most) of her issues...and have (at the very least) a direction on where to go from here. It's been a very long and stressful process...with definite ups and downs along the way, but I finally feel like we're headed in the right direction.
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