Please

Yesterday we met Mr N's new therapist, but he fell asleep during therapy. They basically just did a little playing with him to reacquaint him with his old therapist and introduce him to his new therapist.

Today Mr N again tried to take a nap during therapy, but I tickled him and played with him to keep him awake. Then we kept him engaged the entire time they were here today. At one point his new therapist took a potty break and he went looking for her, he likes her already. I was pretty relieved to see him take to her so well. He played Ring-Around-the-Rosie with her and Sleeping Giant, he engaged in ball play, play doh time, puzzle work, water play, art and music time.

Mr N's vocabulary seems to have taken off in the last 2 weeks, even his old therapist noticed that he's talking more. I'm not sure if putting into practice the speech therapists suggestions have helped or if he's just picking up new words. During ball time they were prompting him to say "up" and to say "please" and a few times he even said "please" unprompted. I was thrilled, "please" is one of the words Daddy and I have been really working with him on, we feel that manners are extremely important "thank you and please" can go a long way. We haven't really worked with him much on "sir" and "ma'am" but we have taught E to use such manners. I was a bit surprised when I asked him something during therapy and he said "no ma'am". Okay so maybe shocked is a better description of my feelings.

Today they reintroduced the visual calendar and initiated Mr N removing the activity that they were transitioning into by pulling the item off the magnet board and putting it in a cup. At first he was quite reluctant, it hasn't been that long since the "incident" that initiated operation meltdown. Quite to my surprise he came around to it and by the 3rd or 4th activity he willing took the piece and put it in the cup. I breathed a sigh of relief.

I'm so proud of my little man! Day two of restarting therapy and he did great things, he really did amazing. I thought it would take longer to get him back on track. I'm hoping for great things the next two days as well.

Back to Therapy

Therapy starts back up today, Mr N's old (not as in old age wise, old as in previous) therapist will be here today to help train the new therapist. I'm already nervous, wondering how he will get along with the new therapist. I hope she doesn't smell funny.

I've been worried that a few weeks without therapy would negatively effect Mr N, but he doesn't seem to have regressed at all. But I'm sure we'll have a better idea of his progress once we start back with therapy.

Mr N has been stringing 2-3 words together and talking more every day. His words seem to be getting clearer and easier to understand. This morning I gave him breakfast and he clearly said "I don't want it", while I'd love him to eat, I was super proud of him for stringing 4 words together so clearly. We've been working really hard to get him to say "more, please" when he wants more of something. He isn't putting the words together yet, but we prompt him to say it and he'll say "more" we prompt again for "please" and he complies. I love seeing/hearing the progress he makes, baby steps.

Hearing Mr N say "mama" so easily, so readily, so frequently is like music to my ears. My little man has discovered the magic of "mama" and says it often to get my attention, to get hugs, and to express his love. The inflection in his voice as he says "mama" indicates exactly what he wants. Sometimes "mama" is yelled to get my attention, other times it's a soft, gentle "mama" with arms extended to receive hugs, it's also spoken through tears and sadness when he needs to be comforted. No matter the reason behind the "mama" my heart soars.

It seems like Mr N's progress and  behaviors are the recipe for an emotional roller coaster. There are times when I really am astonished by his progress and think he'll be caught up in no time. There are other days when I think he's getting worse, days when his autism is so obvious that I worry that he'll always require 24 hour care. Today is a good day, he's been talking and engaging in typical play, interacting appropriately with his sister and using imaginative play.

The bad days don't even involve a full day of scary behavior. In the last week he has taken a late nap which resulted in not going to sleep at bedtime, this happened two nights. The first night when he wouldn't go to sleep he started engaging in self injury. This terrifies me, he's not been prone to self injury which is a huge relief, I can't even imagine how difficult parents have it when their child does this on a regular basis. Mr N was repeatedly punching himself in the eyes, I kept removing his hands, telling him no and trying to distract him. This went on for probably 30 minutes, I'm not sure if he was just intent on punching himself or if he was enjoying the attention from Mommy when he should have been sleeping. Regardless of his motives, it scared me. These are the moments that make me worry. I just want him to be happy and healthy.

This morning we took in our recycling and picked up extra garbage bags, since we forgot to put our garbage on the curb last week. When we went into the office I told the kids to sit in the chairs while I obtained the bags and wrote a check. Both kids climbed up into the chairs and sat quietly while they waited. I was so proud! Mr N looked so neurotypical sitting there next to his sissy. Days like today make me happy.

I am going to get brave and take the kids out to lunch for pizza before therapy today. This will be one of the few times I've braved a restaurant by myself with the kids. It'll be the first time I've done a place that didn't have a playground. :\

Vacation is over

Our lovely week long vacation with visiting family was amazing to say the least. We spent a few days on the coast and had an awesome time together. Mr N absolutely loved the ocean and played until we dragged him away. The kids had a great time with their cousins and all got along remarkably well, saying goodbye was sad for all. My SIL texted to tell me that her oldest was crying for E because he missed her, E said "they miss me, that means they can visit again and we'll see them tomorrow". If only they lived closer so we could see them every other day.

Spending a full week with Daddy was great for the whole family, he is amazing with Mr N and really worked with him a lot though play. Yesterday, Mr N wanted crackers and each time he wanted another one Daddy had him same "more please", adorable. I love seeing Mr N talking more and more through our hard work.

Looks like therapy will resume next Monday with a new therapist. Hopefully we can switch to morning therapy and be more beneficial for Mr N. I'm nervous to have yet another new therapist, but I guess that is the way it goes. We must move on.

The kids' grandparents sent some toys today, they made some amazing wooden block for Mr N that have different shapes in different colors on each end. He loves them, I've been working with trying to teach him to match the colors and shapes, but he isn't quite getting it yet. He has figured out how to make a block tower out of them though.

Miss E received a doodle bear, she has been gushing about it all day and talking about how much she loves it. It's a washable bear that you can draw on with markers. We've already had to wash it once today after she colored on it. It's already covered again with little drawings.

Today was Daddy's first day back to work, we were quite sad without him. We got used to him being around.

Here are a few posts of the coast, and one of the sunset at home.

And then.....

It seems that each time we think that we are getting closer to getting all the evaluations scheduled and therapies set up, we then find out there is so much work ahead of us.

Speech therapy should be getting scheduled soon, hopefully we'll soon have an OT do an evaluation to find out Mr N's sensory needs.

Yesterday we had therapy from 9:30-12:30 with the coordinator, as Mr N's current therapist is having some health issues and they are in the process of replacing her with someone new.

The coordinator asked if we'd scheduled a brain scan, EEG, blood work and metabolic evaluation yet. Huh? I had no idea we needed to do these things. She said they are typically done around three years old to rule out any other issues. These tests will rule out (or in) Fragile X along with other disorders that are common in children with Autism.

This probably sounds like just routine doctor appointments, testing, evaluations, but to me it's heart wrenching to think that there might be something wrong with my baby that I had never considered. Will it ever end? How much more is there to come? How much more fear, stress, anxiety and worries will I be forced to endure? Is denial still an option? Can I just find some sand and bury my head? I know we need to see if there is anything else that needs to be addressed and treated but sometimes I wonder just how much we can really handle.

Once again, I wish that hugs could cure and love was the best medicine. I can't help but look at my little man and see this beautiful, happy, intelligent little boy whose struggles within cause him so much pain, frustration and confusion. How can such a sweet, caring, loving boy be looking at a lifetime of struggles?

As I sit here typing with tears falling, Mr N comes over and tries to pick the tears out of my eyes. He sees my hurt, he feels my pain, but certainly doesn't know that I cry these tears for him. Minutes later he's asking for milk, I tell him where it is, he laughs and says "what?" and so begins his little game, I repeat myself, he asks "what?" again with a big grin. My darling little boy has a sense of humor, he knows how to make mommy laugh.

Again, I apologize for this contorted rambling of things on my mind. So many random and conflicting emotions constantly bombard me with this journey. I'm super in love with E's newly painted room, it's looking magnificent, I'm extremely ecstatic about my family arriving tomorrow, I'm scared about more testing for Mr N, I'm nervous about how Mr N will deal with relatives for the next week and our planned travels with them. I need to be working on cleaning and getting things organized and ready to go, but I would rather be outside digging holes and filling them in again.

It will probably be a week or more before I'm able to update here, as we will be super busy. I will try to update when we find out when therapy will resume with a new therapist.

Speech Evaluation

So let me just catch up, we haven't had therapy since last Wednesday. The therapist was sick on Thursday, Friday is our scheduled day off, Monday she had a funeral, Tuesday she was sick. I haven't heard whether or not we will be having therapy today.

Yesterday Mr N had his speech evaluation to see if he qualifies for speech therapy, again, I'm not sure why this whole process is so tedious and repetitive, he had an eval in February that indicated he was significantly delayed. Anyway, yesterday he scored 12 months receptive language, and 15 months verbal. It's hard to describe the emotions involved with each of these evaluations. Sometimes I get angry, why hasn't he been receiving services for speech the last 6 months? When he was 15 months old he had his first speech evaluation because we noticed he was losing words and seemed to be delayed. He was at 16-18 months for verbal and receptive speech. It is so frustrating and incredibly sad to know that 15 months ago he was more advanced verbally than he is now. Sadly, at 15 months he had already started regressing and losing words which is what prompted that speech evaluation.

I know he has progressed tremendously since his speech evaluation in February, but I really thought he would score much higher yesterday, I was hoping for 18-20 months. It's discouraging to know that with each evaluation he is getting further and further behind. When he had his evaluation in February, I remember thinking what a relief that he wasn't even a full year behind, we should be able to get him up to speed in no time. He is now a year and a half behind. Now what???? Gaaaaaaaaaaaaaaaaaaaaaah!!!!

The speech pathologist yesterday said that the same evaluation system isn't used by everyone, so that could be why he is scoring lower now than he did in February, even though he's progressed so much since then. I guess that should be good news, or reassuring or something. But it's not. If the evaluation she did is accurate, then he's still considerably more delayed than I realized.

One of the things she mentioned is muscle tone, which could be the reason why his speech isn't very clear most of the time. I'm hoping there is something that can be done to improve that, I'm under the impression that the occupation therapist will be addressing that. We still haven't heard anything from her and when that evaluation will be. Did I mention how incredibly maddening it is to be still trying to get evaluations and therapies that he so desperately needs all these months later? He needs help, he needs it now, just think of how much easier life would be for him if he had everything he needed at his disposal! Yes I'm one frustrated momma just trying to be patient in this very slow process.

Onto the rest of our life, we've been working on the house in all of our spare time, trying to get some unfinished projects done before my family arrives on Saturday. Yesterday we had the carpets and couch cleaned, they look much better. (White carpet & toddlers....yup, now you get it). Last weekend we got the toilet set in the bathroom, bought a sink, put up the wainscoting, now to get the sink plumbed...not quite as easy as normal since the bathroom was apparently an afterthought so the drain pipe isn't coming out of the correct wall. We also got E's room and ceiling painted, along with her bed frame. Monday we picked up some curtains and installed those that night, the kids picked out sheets for their beds, we are close to getting her room done.

This morning I gave Mr N a much needed haircut, one of his least favorite things in the world. He cries the entire time and through his entire shower afterward. I cut it quite short so that he can go two months or so without one, but even every two months is too often for him.

I am off to put all the furniture back since the carpets are now dry, in case we have therapy today.