Neuro Psych Testing

So last summer we had bug see a counselor. The match wasn't there, so a few visits in and we stopped going.  This past summer we tried a pediatric psychologist and the match was much better.  After some questionnaires, talking to us, and a handful of visits with Bug, she felt that Bug exhibited ADHD, Anxiety and Depression.

School started, and she went to her 7 year well check, a month after her birthday.  K took her while I worked, and he called me after.  He said she wasn't being bad during the visit, but was being 'her' and it drove the ped to start asking questions.  The questions led him to discussing anxiety with K, to which he filled the ped in on our summer with the Psychologist.

The ped asked if we would ever consider medicating.  We have been, well, not in a rush to consider doing that.  It's not that we are against it, but it worries us when it comes to her age, and how it can affect her long term, how it can affect her young brain.  He asked us to consider talking to a pediatric psychiatrist.  The one thing that drove us to consider was he explained that with something like anxiety in a young child medication can help by helping to calm them and teach them coping skills before they become teenagers.

We decided to go ahead and meet with a ped psychiatrist, to hear it out. Rehashing everything over and over is hard.  She was great, she was concerned, she listened and heard.  She actually told me that  we had been dealing with a whole lot, and that she was sorry that no one had listened to us, or done anything beyond what had happened so far. So agreed with the psychologist, she advised that Bug had almost all the markers for anxiety and ADHD.  She said she wasn't giving the official diagnosis just yet as she wanted Bug to get Neuro Psych testing to rule out other behavioral health issues, including Autism.  She doesn't feel that she has Autism but wants to rule it out, and if she does, she's very high functioning.

She thinks that prior doctors that we've tried to talk to (including a developmental neurologist) tried to look at just what 'they' deal with, and not the entire picture.

So we agreed to the testing.  As she was giving us the paperwork for it, advising on next visit, and giving us some questionnaires to fill out, she also asked us to consider medication.

The testing comes in 4 parts; the first and last are parent only meetings.  The second and third are 2 sessions of 3 hour testing with a 10-15 minute break in the middle.  The initial first visit was going to be in March 2018, but we managed to fill in a cancellation and that first visit is now December 11.

Medication scares me. I don't want my 7 year old daughter to become numb. I don't want her to lose her spunk, lose her stubbornness, lose the person she really is, deep down inside.  I want to help her, I want to help us and try to get everyone some sanity back.  I want to see the little girl that she is 85% of the time instead of only 15% of the time.  I want that smile, that goofiness, that love that shines from her.  But I don't want to numb her.

And once we get the official diagnosis we will need to update her IEP.  I need to make sure she gets everything she needs.

So now we have a monthly psychiatry appointment and a monthly GI appointment for her encopresis.  Which we are getting ready to do a clean out this weekend, along with a specialized X-ray called a sitz marker test, and likely some blood work.

All in my last semester of my MBA.  I'm struggling. I'm feeling very overwhelmed.  Life is hard right now, and we are trying to balance it all.

And poor Bubba, he just deals with all of this.  And in the midst of it all we got a call from the school (he is in the preschool program in our school system as a typical peer) that he failed 2 vision tests.  They go down to 20-35 for preschool, and both times he couldn't make it past 20-50 in his left eye.  So an eye appointment is set up for a few weeks from now.

But we are hanging in there.  We will get there.  Life will continue on and we will push through it all.

New Direction?

Writing was always very therapeutic for me. I started this blog originally thinking I would share the link with my family and let them keep up with my baby girl, Bug. It became a place to vent in my sleep deprivation, and was my sanity through our last attempt at IVF, and through the birth of our little boy.

It's been a while since i've written. Not because the therapy of writing was gone, but with school and the craziness of 2 young kids, a husband who travels, I just found myself lost in translation, and simply stopped writing.

The last 2 years have been, well, crazy.  And now I'm back for a wholly new reason.  I need the therapeutic benefits again - for my own sanity.

We have continued to struggle with issues due to the peri anal strep that Bug was diagnosed with years ago, after the initial pediatrician ignored us. We changed peds, included a pediatric GI, resorted to miralax and exalt when I really didn't want to, have had X-rays, clean outs, and find ourselves now in year 4 of dealing with continued encopresis.

She remains on an IEP and continues to struggle. She talks so much, but she's still very unclear, and now we are dealing with some added frustration of having to learn new things in school. That's only going to get worse in first grade, but we added in 'brain breaks' and reviews for her receptive speech as well.

We also started her with a psychologist.  We are struggling with sensory issues, depression, anxiety, severe behavioral issues (anger, lashing out both verbally and physically, frustration, etc). Both her and a prior counselor suspect ADHD.

And I'm struggling with it all. Just like she gets frustrated when I sometimes can't understand her, I get frustrated with her (and I shouldn't!!) when she's at her worst, when she's having multiple accidents, when she's refusing to take her medicine, when she's lashing out and hitting, kicking, scratching, screaming at whomever she feels has slighted her.  And a slight to her could be as simple as she didn't want you to LOOK at her, at that EXACT moment, in that EXACT way. Even though 2 minutes ago she wanted, DEMANDED you look at her.

I feel touched out, all the time. She's 7 now, but she constantly has to be on you - hanging on you, sitting on your lap, leaning against you. Doesn't matter if you're eating, sitting on the couch, going to the bathroom. She refuses to do anything alone; she won't go to the bathroom by herself, won't come downstairs in the morning alone (and she's an EARLY riser!!! on a good day she's up at 620, on a not good day it's 500am. and everywhere in between). She hangs on you when you try to make dinner.

A few years ago I had my BFF's father in law comment on the amazing amount of patience I had with Bug.  I feel like over the years that patience has eroded. I feel like I find myself on the ledge too often, and it breaks my heart, and I feel horrible and I beat myself up when I yell at the kids.

I wonder if I'm picking my battles poorly. And because she melts down every time I tell her no, it makes me second guess and question every. damn. decision I make.

I'm now questioning my own sanity.  I'm questioning if I can really be successful at this parenting thing. I'm so scared that I won't raise them to be good people, to treat others right, and to do what works for them; makes them happy. I'm afraid i'm neglecting Bubba because she is so demanding of all effort and energy, and more than half the time it's just me to give it to both of them. I'm trying to find myself a counselor, I'm afraid that I've hit a wall for myself, I think I may be struggling with anxiety myself.

I'm trying to keep it together. I'm trying to reign my own anxiety in. I'm trying not to speak to them too harshly. I'm trying to be the mom they need me to be.  I love them so very much, more than life itself. I would do anything for them, I want to be their everything.

Bugs speech delay will not win

Wow, it's been a bit since I've managed to write.  So much for a computer helping to make that happen :-)  Needless to say, school, work and the kids have kept me busy!!

So when we bought a house back in April, one of the things that we looked for, as I'm sure most, if not all, parents do, was a good school district.  Shortly after moving I outreached to the school district to talk to them about getting Bug assessed.

Let me back up a step.  I've mentioned many times that Bug has a speech delay.  Well initially we had her assessed b Early Intervention back at 18 months.  We used them until she hit age 3, which is when she aged out.  They would have transferred her over to the school district at that time, but we did NOT like the school district we were in, and therefore went on our own and worked with her, did the speech therapy thing, etc.

So I knew that at 3 we could get help.

Well we moved shortly before her 4th birthday.  So I called the new school district and asked them about getting her assessed.  It was at the end of the school year, so they sent me out the paperwork but advised that an assessment wouldn't happen until the new school year.  Which I was OK with.  I actually even held off on sending the paperwork for a bit so that I could send in the most up to date information.  So I sent it in early August.

They came out and did an initial assessment at home.  K and I were both here, and we actually got her to say a lot during this initial assessment.  At the beginning of the assessment, the woman doing it let us know the steps of the process.  The initial at home assessment, then if they determined the child warranted further review a play assessment at one of the schools where a team of people assess and make the decision together.  Then they would decide at what level of need the child was at.  For example, just speech therapy in the home, or maybe at her current daycare, all the way up to being eligible for the school districts preschool program.

So they did the in home assessment, and before the woman left she advised that they would want to bring Bug in for a play assessment.

So we took her in for the play assessment.  K handled the majority of that assessment as I was only able to stay for a little while.  They let me know before I left that they would schedule a meeting after they had a chance to meet and decide what to do, and that meeting would be either a 'your child is fine' kinda meeting, or they would present their findings and an IEP.

When I talked to K after the play assessment was over, I asked him what he thought.  He said they eluded to the fact that she would be eligible for some services, but we weren't sure what.  It took a few weeks before I got the call, but they scheduled an IEP meeting.  Based on the call I knew it was an actual IEP meeting and not a 'give your kid a break, she's fine' meeting.  And I was happy about that - she has come so far, but I think we need the professionals to be back in the mix now.

So, I went to the meeting.  K wasn't able to come, but my mom was, and I was really glad that she was able to tag along.

It was kinda crazy when I got there and there were 5 people in the room.  I felt a bit stressed about that at first.  There was the speech therapist, 2 preschool teachers, the school psychologist and the person who did the initial at home assessment.  They started off the meeting by going over each of their individual thoughts/findings/assessments of Bug.  Nothing was surprising.

The speech therapist then went over where she fell on her language skills.  They found her receptive language just barely normal, which is what i expected.  I think she's got better receptive then what they gave her credit for, but knowing my daughter like I do, she didn't show them everything she can do.  She gets shy, and when pushed in a situation she's not fully comfortable in she kinda shuts down. And they did say she didn't talk much for them, in fact, the speech therapist sat outside the bathroom door when K took her to the bathroom, because she was fighting him on going - and using her words. Yeah, that's my girl ha ha.

Anyways, then the part that made this mama cry came in.  They diagnosed her with a developmental delay.  That was HARD.  Her score was WELL below normal.  But they all said (and I've often wondered) that they think part of it is her significant speech delay.  What they told me is that a developmental delay in educational terms is different than the medical term.  It's given to children ages 3 - 5 who show delays in pre academics.  Things like rote counting to 10, recognizing shapes, colors, numbers, letters, etc.

She struggles with these things.  We work on it, but she still struggles.

So it wasn't a surprise.  But the fact that she fell so far below normal was enough to break me down.

In the end, she qualified for their preschool program.  So Monday through Thursday morning she'll attend preschool in our school district from 8:35 - 11:05.  She will get 40 minutes of speech therapy a week. Her IEP is very detailed with the goals they are aiming for in terms of words and/or signs that others can understand, the number of capital letters she will recognize, how far she can rote count, etc.  The school district will pick her up at daycare and drop her back off; and a car seat will be used (yeah!!).

She is the 9th child in the class, and they can have up to 12.  No more than 4 of them can be 'typical' peers.  They have 1 teacher and 2 aides, plus the speech therapist that comes in on Mondays.  Amazing ratios.  I have very high hopes.  I'm happy with the school district so far.

I got a chance to talk to her teacher, and I LOVE him.  He was actually doing a play assessment with another little boy when we took Bug in for hers, and I could tell just how good he is with kids.  Talking to him reiterated that fact.  You can tell he's in it for the right reasons.

So, the IEP meeting was last Friday.  We are still working on getting the transportation set up since pick up/drop off isn't at home.  But yesterday K drover her and took her to the program so that she could have someone there for her first day, as well as having a day break on Friday to help let it settle in.

K really likes the teacher too, and that's a wonderful wonderful thing.

So.  Here's to the next phase in our lives.  Here's to getting our Bug the additional help she needs, and here's to hoping that this time next year I'll be telling you all about the person my little girl is; and not just what I know because I know her, but what I know because she is TELLING me.