The True Test: Chuck E Cheeses.

We went to Chuck E Cheese's for a friend's little girls birthday on Saturday. This was a stressful situation in my mind, especially for Lilly, since I never know how she is going to react to a busy situation. She's so different from day to day, I didn't know how she would do. I'd say I would keep her from places like Chuck E Cheese's. It was more like if I had to go there for one of my other kid's friends, I would find something for Lilly to do with a different family member. Mostly because of her age. She just turned 3. Which is finally a great age for her to enjoy the games on the one side. Before I think it would have just been a nightmare.

She found two games that she LOVED. I mean yelled, "OH YEAH MAN!" and raise her hands for high fives, each time she would do what she needed to do. It had to have been the funniest thing I'd seen from her. But she was enjoying it, no screaming for it to be more quiet, no crying because kids were too close. It was like she was in her own little world.

I tried so hard to get her to look at me while taking photos, but she wouldn't smile AND look at me. It was either one or the other. Which I expected since her senses and focus was on everything else other than Mom. :)

In the end though, I was really glad she had a good time. She even was upset the next day that we couldn't go to "Chuckacheeses" . It was more a blessing, to see that she could play with so many kids around her and not have a melt down. A true test that she gave me, and I must have passed. ;)

Touch this don't touch that.

So Lilly had a great day on Wednesday at OT. They worked a lot on Tactile things, since that has been the most reactive to her. She stepped on jelly the other day, and started to say, "Ow ow ow Mama!!" Holding up her foot. So I asked that they focus on it today and she had some more moments of those Ow's but she did better than the therapist thought she would with Shaving cream. She also suggested that we work with Shaving cream, bath foam, sand, grass, and even said that a good idea would be finger painting with a little sand in it.

It seems that lately its all about touch, though we did have a reaction to the sound of the bathwater running today. She told me it was too loud and to turn it off. I was a little taken back since she doesn't usually have this reaction to the water. But I noted it too. Been noting everything lately.

Oh and I need to catch up on our first visit with the Behavioral Therapist. We went to see her, and she suggested I start writing down any time she has a meltdown or a tantrum. Well I am not writing down the obvious 3yr old tantrums. Only the ones that are sensory related. Anyhow, I didn't feel comfortable with her. She didn't even read anything about Lilly before hand, and asked that I give her a few mins to catch herself up. Um..unprofessional. Don't waste my time! Geez!

Anyhow, If I feel like this again at the next visit, I will ask to be transferred to a different therapist.

Little Steps.

My child's world is very easily interrupted as with most kids with SPD worlds are easily interrupted. My husband who usually works the day shifts, had to work 2nd shift this week. This made her world topsy turvy. Friday-Sunday she kept asking for us to go to Appointments. "Appointment" usually is the term we use for Occupational Therapy (OT). She really wanted to go, which is NEVER in her plans. She usually is not a fan of doctor appointments, but then the light bulb flickered and she was really saying, "I want to go to Therapy!".

She goes to OT every Wednesday morning. She has good days with leaving my side, and some bad days. A good day is a day where she walks into the rehab room without any tears or sad faces. Last Wednesday was a whimpering day, after saying bye mama, and small lip pouting out, she went in. It was an emotional session. I could hear some crying, but not until she came back out to me at the end of the session did really show how conflicted her little body really is. Her crying, while saying " Mama I so happy! (enter hard crying and heaving) "So glad to see you Mama!" She had a hard time during her session. The previous week was fantastic. Even sat for a full 15 minutes to do an activity. No tears and no problems.

I noticed this week she found our hair brush. She started to rub various limbs and her belly with it on her own. It's not as soft as the Brushing brush we used for Brushing techniques at the beginning. We had stopped using it because instead of it calming her down, she would fight and fight it. She was doing it on her own, and paying attention to how it actually felt. I asked her to do it to me, and she did willingly. She was actually seeking it out. I had never seen her do this before. A little step in the right direction.

She also has been seeking smells. The other day Dad asked her why she had her sniffer on in the kitchen. She could smell the chicken cooking. He had sprayed body spray before work, and she went downstairs to sniff around down there too. She makes it obvious that she is actually seeking by sniffing loudly.

Saturday I tried putting her in big girl underwear, to help encourage her to go on the potty. I saw her grab herself, and took her right up. She fought me up until she got on the potty. She was okay with sitting there. No tears, and was excited for the "duck potty!" She actually went! She realized it was okay, and she actually went. I was so happy for her. She was so happy about it. Later of course she got busy and went in her panties, but it was okay, because she took litte steps and actually went in the potty!

At this time all I can ask for is little steps. Since we are waiting for an actual dx on her, and a full evaluation, we have really been trying the best we can to cope with her ups and downs throughout the days. Some days are better than others. I wish that I could have taken her to an appointment. Especially because, I wish I knew exactly how they did the therapies, so on the days she actually asks for the appointments, I could help her by trying those things. There's a lot of questioning myself. A lot of, "Am I enabling her reactions or am I helping her?" A lot of, " What could be triggering her?" and many "Why can't her sister's just understand, she can not handle that?"

You know they say that with some days kids will have a bad day after you have a bad day. I am sure that is amplified with kids who are SPD affected or on the Autism Spectrum. I hope that we can as parents can notice the tiny steps they make in progress. I find it very hard to some days. Though, there are those days where the little steps are so plain and simple, that you personally take a step back and realize, "It's really going to be okay."

New testing

I took Lilly to see if we can get her an official diagnosis from a Developmental Ped. They said that they would like to do a full evaluation on her, to see what kinds of help we can get her. She is still in OT and I am now offered a behavioral therapist for her. We go to see her next Wednesday morning. I am a little iffy on this, only because I really don't want to be pressured into using any drugs on her. I know I will have the final say of course, but I guess I am mostly just scared because I don't know exactly what a Behavioral Therapist really do. The Social Worker I talked with at the initial appointment said that she will probably introduce her to things that she has reactions to, in hopes that more interactions, she can then learn how to cope with it.

Thing is.. she's only almost 3. How is she suppose to cope.. she's naturally having issues just being almost 3. It's frustrating knowing that I really want help for her but, not knowing what is going on or what is to come, is driving me bonkers.

The testing could take up to 3 months, and will be calling me to set the appointments up. 3 months. Blah!

Lilly's been really having a few rough days. I think its because Dad is home and working 2nd shift this week. She's asking for a lot of space. Followed by a lot of NO NO No!'s so we are working through this, I have to admit I am loosing patience some days. Thankful for a computer and Nick Jr. some days. I just keep praying..and praying for patience and that she learns on her own to help herself.

OT

Well this is the first week we haven't had OT and Lilly could definitely have needed it. She was very over stimulated and had a very active day. Her therapist was on a vacation, and so we wait until next Wednesday. Lilly does a lot of shaking and teeth clenching on her over stimulated day. Along with a lot of, " no no no no no's" and hand flapping/opening and shutting, its was interesting to say the least with my other children. They also are trying to cope with how to interact with her.

My oldest daughter is a hugger. She loves to love on Lilly. Somedays are not good days to hug on Lilly, and she will not hesitate to let you know either. I can see her sister feel frustration when its those days when she is not up for closeness. I have tried to explain that it's not that she doesn't like hugs from her, it's more that her skin today is telling her brain that it's not a good feeling. Tomorrow might be a better day for hugs. Thankfully her sister, who is 8 years old, keeps trying and doesn't feel too discouraged.

My middle daughter, who is 5, is still aware of Lilly and how she acts, but still fully get what SPD is either (Ha! Join the club sister!). She just asked me why Lilly is different than us. I try really hard to let her know that God made her different, just like her and I, and that her body just works differently. It seems to suffice. I hope that as she grows it will be easier to explain to not only her sisters but Lilly herself.

Heck its hard to explain it to our friends, let alone to her. She obviously too young to even know she is different, but when it comes to that time. I am slightly worried. I am hoping that she will get the help she needs through the schools. I hear of so many people having issues with schools giving the proper care even with a Docs Dx. I'm hoping it will go smoother than most. Praying it will.

The Clothes Battle

Today, our battle has been clothes. She dislikes anything that might have a small bunching in shirts.. mostly like the uber cute peasant tops or summer tanks that have a gathering in the top.

Here's a link to a dress that is similar.

Anyhow the gathering at the top of the dress drives Lilly nuts. She can not stand to be in it. She will take it off right away. I keep trying these once in a while to see if she has had any changes in how she feels about wearing them. Though to no surprise, the dislike is still there.

We have found that dresses are still an option, as long as they don't have the gathering and have an sightly open cut, where she isn't feeling "trapped" in it. We've really had some trying times with her and summer time clothes. It's been some nice mornings of just "No Mama Off!" and other mornings of "OFF NOO DON'T LIKE IT!" This morning was a "Nooo Mama take off please!" type of morning. It wasn't so bad.

We used to have problems with shoes. When it came time for Sandals.. there are only a few that she likes. We have tried the ones who fasten around the ankles. There's even ones you just slip on between the toes. Those are a no go. So far there have been some from Family Dollar which only have a small elastic band that goes around the back of her ankle. At first she would walk like she had bricks on her feet. Ha! Funny to watch. She then realized that she actually could still move her feet in them, it wasn't so bad.

Her SPD probably made her feel like she had bricks on her feet. I've noticed with other kids who have SPD issues, they like to have bare feet. Socks are not friendly to them, and usually are off within seconds of putting them on. I was hoping she would love sandals and am hoping for better days in this summer to come. :)

Lilly's Story

So Lilly is our vibrant, silly, youngest daughter. She's the youngest of 3 girls, and most of the time acts like she runs the show. Usually she does... Oh did I mention she's almost 3 years old?

When Lilly was born, it was different because during birthing her nose and sinuses were swollen shut from the pressures of birthing. We had all the rush of specialty doctors and nurses from the NICU rush in and only got to see her for a few seconds. They originally thought that her sinus cavities did not properly grow, allowing air to flow properly. Thankfully, they were wrong and she only had to spend a few days in NICU while she gained weight and the swelling went down.

She then came home and as the months came along, I noticed that she sounded congested. So I brought her to the Ped, and she just advised me to do the regular steaming and run the humidifier. I continued to do this, and after 3 more visits over the course of 4 months. I had become fed up, and told the Ped that although I love her as a doctor, I was getting tired of seeing her, and Lilly wasn't getting better. She then referred me to a Pulmonary doctor that had looked over her in the NICU and we went to see him. That feeling that a Mother gets in their gut that something is just not right, and even after dismissing yourself more and more, and it's still there, you learn to just start listening to yourself.

Going to the Pulmonologist, we then found out that Lilly has an aortic arch. Most kids who have this have a Double Aortic Arch. Lilly skated away with just one. Basically Lilly's Aortic Valve grew naturally connected by tissue, against her Trachea. So instead of her Trachea having a natural round shape, its compressed a little and looks more oval. This causes her when she coughs to sound like she has croup, and although it might be a normal cough for you and I it's just one of those things where I take the dirty looks from parents who think she is really sick with a cold or virus, and chalk it up to them being judgemental.

Since we found this out around 6 or 7months of age, we thought that was going to be the extent of her problems. No biggie right? I mean this is a pretty big thing for your child to have out of the blue. Then she continued to grow, the cough still sounded bad, but her breathing didn't sound like she was sick and we continued to get the "She's doing great" Check ups.

Once she hit about 1 and 1/2 years old or so I noticed she did a lot of standing and rocking back and forth. She also did this thing with her hands when she got excited about something. Instead of clapping when excited for something, she would open and close her hands very quickly and repetitively along with making a face, like she wasn't really in control of how she was feeling.

I, at first, just chalked it up to her having her own quirky response. Every kid is different. But then by two it wasn't changing at all, some of her words were once there, it regressed to nothing. I started to use ASL with her, and finally had felt like, " Phew! I can finally communicate with her!" She didn't want to be affectionate, and I felt she didn't like it when we held her or showed her affection. Pushing us away when we did hug her. We did have her on a pacifier and thought that once she hit 2 like her sisters, I would ween her off of it. I then noticed that when she did have it taken away, she asked for it once. Then started to soothe herself with a tag on her blanket. She would use it to put it right to her nose, face, and through her fingers.

I got worried. I started to look at information regarding Autism. She had some signs, but not many. But, I did bring it up to my daughters Ped. and she said that if I was worried, to just have Early Intervention to come and do an evaluation. I told her I would take the referral but thought, "Eh.. maybe I'll just wait it out, maybe it's just a phase." So I waited, and while I waited I had a friend on Twitter, ( @johncaveosborne and you can also find his blog here .) Mention a documentary about a little boy named Graham. It's called "Autistic-Like Graham's Story" It was done by his parents, The Linthorst's and it opened my eyes to SPD.

Ha! Are ya still with me?! Let's hope so.

Now after watching the documentary about Graham. It was it all clicked, and if God was smacking me upside the head, I was feeling it now. I then, shared this with my Husband and we thought it would be a good idea to have the Ped see her again for this. Now, you might noticed that I didn't really mention my husband before. That's because I was keeping all my worries to myself. Until I saw this documentary. I had proof to show him and it changed his mind. So I took her in and explained why I hadn't seen early intervention sooner, ( Oh so you know the reason was just Denial..) and she suggested that since things weren't changing that maybe I also see an Occupational Therapist in addition to having Early Intervention coming to our house for evaluation.

We had Early Intervention come into our home. For Lilly, home is her safest area. She has the least reactions here. Early Intervention concluded that she wasn't "Failing Enough", and developmentally she was right on track with her age group. Well of course, I was upset.. they weren't there for the SPD, they were there for her developmental state. Frustrated, I then took her to the OT. for the evaluation there. Being in a doctor's office environment, is the biggest trigger she has. We can be in the lobby sitting and the "Go homes!" start. Once we go through the door to the office.. it's meltdown mania. She did okay at first, then after we did the evaluation in the smaller room, and she had toys in front of her, she was getting anxious. We talked, and then let her out into the larger room with lots of interactive toys, and as she was running around checking everything out. The only thing is the OT was watching Motor Skills, and I was watching my kid play. The OT said that she thought that she was a qualifying child for therapy, and we've been slowly going each week, and she has started to respond to her therapist pretty good. A few meltdowns, and crying for Mommy, which I'll admit crushes me when I hear it, I know she just had to learn to cope which is what they are helping her do.

You have no idea how incredible it felt for them to validate what I was seeing. I felt like shouting FINALLY!!!! I was so happy, and it was less stressful knowing that Lilly was going to be okay. Now we are working to get her into preschool and potty training. That will be her next challenge. Now that we know what we are working with, we are okay with it. :)