Even more confused

So my impatience got the best of me again, dang it! I posted on FB how my heart is super happy for Derek, and it is but the more I thought about it my brain is more confused.

Last week we had an appt with a speech therapist to do her assessment on Derek. After 1.5 hrs she came out and asked if I'd been working with him over the summer, and continued to say he has improved tremendously since June, he only struggles when asked to repeat a sentence, she doesn't think his scores will qualify him to be seen.

Today he had an appt with the Occupational Therapist for his assessment regarding his fine motor skills. He barely passed, only 1 or 2 points made the difference. He struggles with his grasp while holding a crayon, pencil etc. and holding scissors. The OT said "There isn't anything wrong, or malfunctioning, in his brain, it's just the muscles that need to be strengthened so I will put in a recommendation, but can also give you ideas, tips, tools and exercises to do at home." GREAT!!

So overall my heart is super happy because the things we did over summer to prepare him for going to school full time, has worked! That was very evident, he has grown by leaps and bounds which is so exciting and I'm so happy for him. However in the back of my mind, I am still left with so many questions.

I spoke with the Dr at his 4 yr checkup back in March and expressed my concerns and was immediately referred to a bunch of people within the school system. All the details are in the other blog post. Now that the assessments are done, I'm still left with mostly the same questions and concerns I had before. I know this is just one of many steps, and I'm not sure what I was expecting them to say. There is no clear answer, and they aren't medical professionals so I definitely wasn't going to receive a diagnosis, not sure if I was hoping for one.

He really has improved so much in only 6 months, so I know some of it is maturity related. He starts school full time on the 24th, right now he's only going for 2 hours a day to get him used to the classroom etc. I am still nervous for him but not as much as I was 6 months ago, that's for sure.
I can't end the blog without some pics of my handsome boy:

Derek's Evaluation

After 2 months of waiting, even though it has felt a lot longer than that, Derek had his evaluation today. The e-mail we received said it could last from 1 to 3 hours, it only lasted 45 minutes. Now most people wouldn't complain about that, and I'm not; exactly. When I arrived Steve was walking out of the classroom with Derek, they had already talked to him and given them their findings, the only thing left was some paperwork that Steve didn't know the answers to such as; when did your child first; roll over, crawl, walk, say a pronoun... etc, you know all the questions that only a mom of one child would know the answers to off the top of her head.

I asked how everything went and what we do from here? This was the response I received "Your son is a very polite smart little boy, who loves dinosaurs! Honestly, from reading your e-mail we were prepared for a handful but he did everything we asked without hesitation and was very sweet."

"He has an issue processing big sentences. This could be why he struggles in big group settings, because there are too many details being thrown at him and his brain can't process it all, it goes into overload and that's why he melts down. He is frustrated because he knows he's supposed to do something but he doesn't understand any of it. So when talking with him use smaller sentences and do things in steps. Such as please pick up the book; once he has done that then say Go put the book on the shelf; then when he's done ask him to Come sit down. Most cases we would normally say Ok go pick up the books put them on the shelf and when you've finished that come sit on the carpet."

They tested his general & fine motor skills. He scored perfectly on the general motor skills, like jumping, running, hopping, etc. However he only scored 20/60 on his fine motor skills, things like the way he holds a crayon to color, a pencil to write, cutting paper, holding a fork etc.

Derek saw a speech therapist and she said he was right where he needs to be for his age, so no problems there. He also had his hearing and vision checked, passed that with no problems.

Where we go from here? They have 45 days to get back to us and set up a consultation meeting to discuss what they have found, what they think needs to be done, and set up any referrals for treatment, therapy etc.

So we will just wait. I expected to hear a little more of the results today, and was a little disappointed that we could wait up to 45 days, but I think about where Derek was when he first started school to where he is now. He has grown so much in these 5 months. He now has best friends that are excited to see him. We went to a festival on Saturday and surprisingly there were about 5 of his school buddies there, every time we'd go to a new booth, or area of the festival there was one of Derek's friends and they would growl at each other and chase each other around us, typical boy stuff. Usually though it's Elora who runs into so many friends, it was very surprising and I was excited for him!

We have only received one bad report from school in the past 5 months, compared to his first 3 weeks when we were being pulled aside EVERY day after school. So things are coming along, taking each day as it comes.

Decisions

<--- Keeping busy at the Dr's
Derek saw the Dr. today, it was just a check up since he turned 4, but I expressed our concerns about Derek and he was helpful in some ways and not in others. I got the feeling that he didn't really want to take the time to "diagnose" him, and was quick to give us the referral. Could have been that he was already behind, we didn't end up getting out of there until almost 2 hours after our appointment time. He listened to what I had to say and the only thing he replied with was "Some of what you described is normal behavior for children his age." So anyway he gave me the referral as soon as I got home; put the boys down for a nap, and called EDIS where I was informed that because he is older than 3, they can't evaluate him there, that I need to go to Child Find, a program affiliated with RAF Lakenheath Elementary, the school on base.


I called and turns out this is quite the process as if it wasn't already. I have to pick up a packet to fill out and bring in the required documents, at the time that I turn it in, which is only a 2 hour window in the morning, Derek will need to have a visual & hearing test. Then once all that goes through we will attend a group & individual session that only takes place once a month, which she also notified me they are full for April & May. If he qualifies, then the only way to receive "treatment" is to enroll him in the DODD's American school on base. SIGH...

Trying to keep the story short but when I called EDIS they had to call me back because they wanted to make sure they couldn't treat him etc. so when I got the call back she explained some of the procedure and had mentioned if he needs an sort of treatment he'd have to be enrolled into the DODD's school, and asked if this was something we would do. I replied with "Of course we want to make the best deicision for him, however we live in Ely and the school he's attending right now is willing to work with him they have put him on an IEP and we've had a couple parent teacher meetings, he's actually done so much better in the past 2 weeks since they've started him on it and it's the same school my daughter attends, we love it out here and are very happy with their school, so it may just be that we make that decision when and if need be, but again Derek is our top priority and we'll do what has to be done to help him." She replied with "Wow, that's the best answer I think I've ever received, you sound like such a great mom, your children are very lucky to have such a strong advocate for them!" AHHHH I about lost it on the phone, I got all choked up and just told her she made my day!                                        

Derek 21-Mar

We drove 25 mins to base, were right outside the gate when I got a phone call that Dereks appt today has to be rescheduled due to his Dr. being sick. SOOOO I know some of you were praying and awaiting an update so I'll give a brief one.

2 weeks ago after meeting with Derek's teacher, he was put on an IEP, individual education plan. Steve & I and the teachers have noticed a huge improvement. (For details on his prior behavior, check the previous post) Instead of pointing out the bad behavior they have been giving more praise when he does what he is supposed to. Derek has a new dinosaur sheet everyday where he earns stickers that he gets to put on the dino & they write a little note explaining why he earned the sticker. At carpet time, he is pulled into another room with 3 other kids where they do the exact same thing as the rest of the class, just on a smaller setting and this has really worked out for him. Instead of receiving bad reports when we pick him up it's all been positive.

There are 2 teachers and 4 teacher aides. 26 students in Derek's class, the butterflies, and 26 students in the ladybird class. The layout of the classes is like 2 really BIG rooms, with a cloak room & restrooms behind it, the classes are combined until carpet time where they read stories, do a group activity, etc. then they seperate. They have their own playground and outdoor rec area, seperate from the other grades. There are numerous centers all around the classrooms and the kids pick what they want to do/play with and the teachers integrate a teaching lesson into what they are doing. Very close to Montessori style. The teachers have an AM class, AND a PM class, so on a daily basis they deal with 100 different children!! So the fact that they are willing to work with Derek is so awesome, and I truly feel blessed and grateful.

We still have our moments of course, Derek has good & bad moments and a lot of it is a reaction to how Steve, Elora, or I are acting. If we're running behind in the morning and we're frustrated and anxious then he is as well but he doesn't just keep going to make up the time he just melts down and it seems like he is stuck in quicksand and it takes a lot of coaxing, & patience before we can even get out the door.

He doesn't respond to yelling, in any way, which in a way is a blessing in its self, because this is an area of my parenting I've been wanting to change, When our kids grow up and when they talk about "mom and dad" I don't want them to say "Remember how mom and dad were always yelling!"  So now I am forced to change, God answers prayers just maybe not in the way we want them to. The best way we've found so far to get him to calm down is a time out, and by the end of his 4 minutes he's back to his happy self. Recently, when we put him in time out he said "It's time for me to get out now!" We replied with "No, you are 4 years old now,you have to stay in time out for 4 minutes." He said "No,I did not have a batman birthday I am 3, no I'm 2, so only 2 minutes!" LOL Nice try kiddo,

So for now, Derek is doing awesome and even though it isn't about us, Steve & I are becoming better parents because of him.

p.s. another cute Derek Story,we were having company stay over on Saturday so I told the kids they needed to do their chores so their rooms and playroom were clean. Derek jumped on this and cleaned his room and then he cleaned the playroom all by himself. This is amazing since normally Derek hates cleaning and he'll cry & whine the entire time, but not this day. When he was all done he said "I get my money now!" I said yes, I'm so proud of you! He replied with "Yeah I did it all my self, Dynan & Rora didn't help. I get 1, 2 monies now since Rora did not do it?" Smartie pants

Derek

As some of you have read on facebook the past couple weeks have been rough, I said I'd post more details about it in the blog, but I keep putting it off because honestly I don't know what exactly to say or how to say it... Steven & I both think Derek may have Aspergers.

After thinking about all Derek has gone through, his attitude, behavior etc. my first thought was he might have Tuberous Sclerosis Complex, TSC, the same disease that my sister has. However, the more research I've been doing(which has been hours and hours every night) Steve and I both feel it may not be TSC and are leaning more towards Aspergers.

We've made him a Dr's appointment on the 21st, I was going to wait until then to post something so I could have something more substantial, but my friends know me too well and have been bombarding me with messages asking if I was ok.(I love you guys!) They say there are steps when dealing with bad news, an illness, etc. Denial/Isolation; Anger, Depression, & Acceptance. I think this is 100% spot on.

I've always heard that boys and girls are so different etc. so when Derek wasn't doing things around the same age as Elora was I didn't think much of it, I knew boys & girls were different and all kids were different. Then his speech was really delayed, which a few months of speech therapy helped. He would also get so upset so easily and then whine & cry, again I thought this is normal toddler behavior, and just thought he got frustrated because we couldn't understand what he was trying to tell us and it would get better as he got older. (I guess this is the denial part, although honestly I never really thought about my son having Aspergers)

For a few months now he tries to tell us something but gets stuck and repeats the beginning of the sentence, like if he is trying to say I want a drink, he'll repeat "I want" a few times before I tell him slow down and think of what you want to say and then he'll say it.

At nap time, he has been a ninja and sneaks into other rooms, on Sat he got into all my makeup and nail polish, and while the majority of it was on him there are bright pink nail polish spots all over our bedroom carpet, when we asked why he did it he just replied with "I wanted to wear makeup" he didn't think it was wrong and when we explained that it was very naughty I could tell he just wasn't understanding. Derek has always snuck things into his bed, some of you may recall the purple puffy paint incident, again we just thought it was contributed to toddler behavior.
He has a hard time sleeping, he won't fall asleep until like 9 or 10, wakes up a few times throughout the night and then is wide awake at 5, also again I've heard of some kids being great sleepers and others that aren't.

Derek's been going to school for 3 hrs every day for about a month, and last week we've been pulled aside at the end of every day by his teacher and she tells us his behavior is terrible. When asked to stop playing and clean up he replies with No and carries on what he's doing. At carpet time, he can't sit still and always is touching the other kids. I met with Derek's teacher today and she said he does show some signs but at this age it is hard to tell whether it's just a lack of maturity, or just lack of concentration, or if it is a degree of Autism. So we agreed that he'll go on an IEP, and they'll start praising his good behavior and rewarding him with stickers and then during carpet time he'll be pulled along with 4 other students who are also struggling and have their own carpet time. So at least the school is willing to work with him.

The past couple of weeks, I've been heartbroken and I think I will be for a while for him. I think about his future and what kind of life he may live and I get angry. He won't be able to enlist in the military, how will he do in college when it's so hard for the average person? Will Derek ever truly be able to be on his own?  So many questions and only God knows the answer. I am trying to be patient for/with him and teach Elora & Dylan patience. I think this is going to be my biggest struggle so for now lots of prayers for Derek, and for us.

Derek just celebrated his 4th Birthday!! He's having a Batman Birthday party on Saturday where 12 of his school buddies will be attending! :) Should be tons of fun!! :)

Regression

"Regression occurs where a person returns to a child state to escape the present."

They say regression is common in children, especially when dealing with potty training. I am definitely going through this with my middle child! He has decided to go potty everywhere, EXCEPT the toilet. I just spent 30 minutes(while all the other kids are napping all you moms know how sacred this time is) scrubbing my bedroom carpet leading to the toilet including right in front of the toilet. When I look into the bowl there is just clear water not a single trace of anything! (I'm not just talking about pee either, at least not this case) Yesterday he decides to pee in the van! The day before that, on the stairs it sounded like I had one of those zen water fountain things that is supposed to calm you. Which by the way I don't think I WILL EVER find that noise calming again!

He has been day time potty trained for about 6 months now, but for the past week it has been just plain awful! The professionals say to think about what has changed in the child's life, and this will explain why the child has regressed.  When I think about what the heck has changed in a week that is causing him to regress this much... Daddy leaving for a temporary duty assignment, TDY! It amazes me how much and how quickly my middle son has regressed. Daddy just left last Weds. so it's only been a week, it's like the day after daddy leaves BAM! I am in no way blaming Daddy, this is the way military life is and I often hear that almost all military kids regress when dad leaves for a deployment. It doesn't make it suck any less! It amazes me how in their little minds when something changes, they decide NOPE not going to do it!

So that brings me to my next concern, there will be so much change happening to our family in the next few months. We will be homeless for at least 2 months, while we are in transition moving from Minot ND to Lakenheath England. Middle Son will be starting pre-school, and oldest daughter will be starting Kindergarten so she won't be home all day. I only have to wonder... when we finally get him back on track with potty training, is this regression going to rear it's ugly, messy, stinky, head again, because honestly I am DONE dealing with POOP! Here's hoping that Son #3 will be ready to be potty trained very soon because after dealing with it for 5 years, I'm not dealing with it for another 2!

When I read the definition of regression in relation to children that I mentioned at the beginning, I start to think about how even as adults we regress to a child like state to escape the present. No, you don't see grown adults peeing and pooping everywhere, but you do see moms and dads screaming at their children because they are so tired or fed up or just plain cranky, (guilty), or throwing a tantrum because something doesn't happen when, where, and how they want it to, (guilty), cry & whine because they've just had enough and can't verbalize what they are feeling, (guilty). So when I think about how adults, even me, can regress it makes me feel so much better when I'm scrubbing those carpets/stairs/vehicle/laminate flooring/bed sheets!! :)

There is a light at the end of the tunnel!!

  As a friend mentioned the other day, when talking to a pediatrician about potty training their response is always "Well you never see a boy in college still in diapers!" Her response to that... "Well, mine just might be the 1st!" AMEN to that HAHA