Speech Evaluation Complete

I've said it before and I'm sure I'll say it again - when you are dealing with Rady Children's Hospital, you are dealing with a bunch of great people.

This morning, Raquel had her initial speech evaluation at their Oceanside Speech & Language Center. I didn't know what to expect, and was a bit concerned because Raquel woke up at 5am, but as soon as I was greeted by Danielle, the speech therapist/evaluator, I knew I was in wonderful hands.

Although she has only been at Rady's for a little over a month, she has worked in a similar position in Los Angeles for, I think, eight years, and specializes in treating preschool aged children, primarily dealing with Autism and Apraxia. She's also trained therapists for the ABA Program, so she was extremely familiar with the therapy structure Raquel had, and was able to provide me with her observations, recommendations, and feedback.

The session didn't particularly start out that great. She took us into a tiny room - again, Raquel doesn't like being confined - and it really wasn't a kid friendly place. Toys were definitely present, but Raquel wanted to play with the phone, the computer, the desk drawer, her files - everything she wasn't supposed to get into. This eventually turned into a game with her: she'd reach for something she knew she shouldn't have and look at me with a big smile on her face. Danielle commented on how her teasing nature was very age appropriate, but then moved us to a different room across the hall that didn't have all the distractions.

Once moved, Danielle tried repeatedly to engage Raquel in some play activities, but Raquel kept coming back to me. Once I told Danielle that it takes awhile for Raquel to warm up to someone new, and that too many toys being out are over-stimulating to her, she decided it would be best to observe her interacting with me instead. She watched how Raquel responded to me reading a book to her. I'd tell her to turn the page, and she would, and she really focused on the pictures and then would look up and make eye contact at me, making the activity a shared one. She also started to talk some, and once she got up and started moving around, the speech increased. Danielle said that this signifies that she is at a specific level of speech development - when gross motor and speech are linked together. This typically happens at the year to year and a half age range.

After being there well over an hour and a half, Raquel became tired and obviously wanted to leave. No tantrum or anything, she was just ready to go. As soon as I stood up and grabbed my purse, she got a big smile on her face, high fiving Danielle as we walked out the door.

Since Danielle treats Autistic kids primarily, I had to ask the question that I've asked all the others: "Do you see Raquel as being Autistic?" Without slight hesitation, she said she didn't, that she understood she was given the diagnosis of Mild Pervasive Developmental Disorder, but feels that was primarily due to her sensory issues. Even if PDD is her true diagnosis, she said that it is on the lowest end of the Austistic Spectrum. Her opinion - at this point - is that this is a seizure triggered neurological condition. And she did stress the importance of the fact that their job is not to make a diagnosis, but to treat the condition. We are also going to be resuming the PECS (Picture Exchange Communication System).

What's next? Danielle has to put together a report and figure out a game plan. She did tell me that she didn't feel a longer session would be to Raquel's benefit at this point because of her short attention span. I should hear back from Rady Children's in a couple weeks to work out the scheduling. I am hoping Danielle will be able to continue treating her, but feel very confident that if it's someone new, they will be highly qualified.

A Nice Family Day

I absolutely love Sundays - especially when I am able to have a nice, quiet day with the family. Mike has been working every Saturday, so it's really nice when the four of us can hang out, be together and catch up on the simple things.

This morning, Mike surprised me by packing breakfast and a blanket, and taking us to the park for an early picnic. It was a beautiful day and we had so much fun. The girls played - and posed - on the swings...







... went on the slides...





... until Raquel didn't want to slide anymore...



... posed for me in the tunnel...

And I took some cute pictures of the girls with dad.





One side note... Raquel will have a speech session/evaluation tomorrow at Rady Children's in Oceanside. I really don't know what to expect but am told that this particular therapist - although very new to the group - specializes in preschool aged children. I'm assuming this means she'll have toys to entice Raquel with. Mike and I have been noticing more speech coming out of Raquel, so I'm very excited to finally get her back in regular sessions. We see her neurologist again in January and I am going to be pushing for weekly sessions until then. Wish us luck. I'll take pictures if they let me. It's really fascinating to watch the therapy process and see how they are able to extract language from her. But I still wish we had Mary for speech therapy again...



... but I promise to go to tomorrow's session with an open mind. :-)

Respite Care? What Respite Care?

Just when I think I've found another replacement for another replacement, everything backfires on me. What a frustrating few (?) weeks it has been.

My regular respite worker has taken an indefinite leave of absence due to family illness. I completely understand that and wish her the absolute best. When the agency called to notify me of this many, MANY weeks ago, they stressed the importance of finding someone extremely reliable and who was able to deal with a child who has special needs outside of the "austistic" spectrum.

All of the replacements that have shown up appear to be very nice and able to effectively deal with Raquel for 4 hours once per week. At least that is what the agency tells me. All have been very polite and obviously "kid" people, and Raquel has appeared to take to each of them - probably because she's used to her previous therapists coming and going on a daily basis. Each of them seem fine when leaving, telling me how great Raquel is/was during their shift, and then I get the call from the agency saying they won't be back.

Take today for example. I came home to find a sleeping Raquel and what appeared to be a very content respite worker. She took her for a walk, went on the swing, got her to sleep and all was well. She said she wasn't a problem at all, didn't have any issues, etc. and looked forward to seeing us again on Wednesday (I get to have two days this week because I haven't had care for so long). Then I get the call from the agency stating that it's not going to work, that Raquel was too difficult, and that they need to find a better match. I was very surprised - especially considering I asked about her behavior issues and she said she was not a problem. I asked the agency specifically what she found was so difficult and was told that at one point Raquel became aggitated and began kicking her feet on the ground. I know I've been dealing with Raquel's behaviors for a long time, but this is Sensory 101 here. If you are told you are going to be watching a child with sensory issues, you really should know how to redirect the behavior.

I then asked about the other "replacements" and was told we were too far away, the day/time interferes with their school schedules, etc. etc. etc. SO FRUSTRATING. Again, back to square one. And I really don't like having different people in the house all the time. Typically when a new person starts, I make sure Gabby is home to help - and so she can tell me how it really went. But, I have to pay for them watching Gabby so that takes out of the whole respite being a relief. Plus, Gabby is back in school so this is no longer an option.

I also spoke with Regional today. They called to let me know that due to budget cuts, I no longer have my Educational Consultant, Bev, who was a tremendous help to me during the transition from therapy to the school district system.

And speaking of the school district, they still have not returned my call from the first week of August when I asked for a meeting to discuss Raquel's placement prior to the start of school. Of course, I'm not surprised.

Daycare down the street didn't start either since I don't have a respite worker that can attend class with her. Or one that effectively knows how to redirect her for that matter. The whole point of one going with her was to show them how to handle the behaviors, but until I can find someone who can deal with them on their own, there is no sense for me to waste not only money on daycare costs but also use up a day of much needed respite care.

Feeling pretty beat up today, but on a very positive note, had a great first teacher conference with Gabby this morning. Got some great input and advice, and Gabby really made me proud showing off all she's learned over the first 5 weeks of school!

Looking forward to a relaxing night with the family - and promising myself to take things one day at a time.

Starting Daycare

Today, I coincidentally ran into Gabby's old daycare provider at the grocery store. She asked about Raquel (who was with me) and I told her about the struggles I've been having with the school district and asked her if she had any part-time openings. She does and Raquel will be starting her daycare on September 16th. We are taking baby steps at this and she will be going for only 4 hours, once per week until we feel she is ready to add more days. She will also be going with my respite worker at first so she can show them appropriate ways to deal with her special needs. The reason I am having my respite worker do this instead of going myself is because we all feel that I would be too big of a distraction. And attending daycare and school is about being around other kids instead of Mom.

It's definitely a start - and I'm really happy about it. Plus, the daycare is walking distance from our house.

As far as therapy goes, OT is still in the works. Karin is approved under my insurance but for PPOs not HMOs so I'm still dealing with getting that worked out. But Raquel has her first speech session on the 9th, one week from today, with a therapist named Danielle who specializes in preschool kids.

Such a slow process with all of this but slow and steady wins the race, right? That's what I'm going with at least. And we WILL win this race.