Life for a Mom with one HoH Child and a Communication Impaired Child

I know I've been a bit absent lately, life is completely insane anymore but, in all new, good ways! So, in some ways I'm back! :) I've decided to ease in slowly to getting this blog up and running by copying a few things I've shared on my other blog about once a week. With Tourette Syndrome awareness month fast approaching and Autism awareness month closing soon, I just wanted to share some thing for those who have no experience or no knowledge of various issues. I am not THE authority on these things, these are just my experiences with them...

There is no way around sharing bits and pieces of my life and leaving out why I homeschool or why I have OTs (occupational therapist) blogs, or SLP (speech language pathologist) links to share. So, in honor of my children and the many special needs families out there, each week I will feature a "special needs" issue that some families are dealing with, mainly things that my family has experience with. I also will be featuring various links to places that have helped us to work with or around one or more of my boys' own issues. As the numbers rise of children with one or more neurological disorders. I feel it's something that we need to address and include in our lives. Maybe learn enough about to be able to help each other out. I hope you'll come along for the ride! I promise to still share and post as I always have but, Tuesdays, they're for eye opening experiences that can bring all of us together! :)

This first, I am going to share some things on communication. In a house with a Hard of Hearing/deaf child and one who exhibits signs of Auditory Processing Disorder, I've had to learn my way around pretty fast and not always in the prettiest manner! I am by no means an expert on anything, I just want to share some posts from some very great places that have helped us along in our journey. These sights were good for DW who has a little trouble with hearing certain letters or sounds and they work well with JD who, well he's just all around hard to communicate with period, though he's made some amazingly HUGE strides just in the last year alone. Please note, that both of my boys are in OT, PT and JD is in ST (speech therapy) so, these sites didn't just do all the work!

First up is Speech Time Fun. I loved her two tap lights idea! Her suggestions and printables just add to feel of this exercise! It's a really neat thing to try, even if you can't get them to do the part where you record their own voice. It's still a fun thing or the kiddos to do with the tap lights!

*If your kiddo has a SPD (Sensory Processing Disorder with or w/o autism and has an aversion to white, you can always paint these. Just be careful to keep the paint out of the crevices. To change the light color, I used tissue paper and colored tape to cover the dome. *

Another great resource is Testy Yet Trying. There are a bunch of great printable cards to help your kiddo articulate the particular sounds. Though if you check out the blog itself, there are a myriad of other printables, games and ways to help your kiddo maybe learn to begin to communicate!

As a homeschooler with a preschooler who is obsessed with being homeschooled (I love these years!),  this site is a BLESSING a lot of the time. LiveSpeakLove is a great site that has so many printables and activities for you and your child to try! This one here, I cannot wait to try with the little guy!

This next site works well for my boys. My oldest, computer obsessed kiddo it works for practicing his blends, something he seems to have some trouble with on occasion. That being said, Reading Fun was awesome for teaching the preschooler his colors, patterns and a few other things too. It's a completely online group of activities for them to do by themselves or with you. 

If you have a special needs kiddo who...for lack of a better word has, "anger issues".....whether that is loosing it over the smell of fresh peeled oranges, or has tics so bad he/she rages out or because specifically their communication skills are behind, you know managing and trying to head off a meltdown is not easy. By a LONG shot! With my oldest son, he would get so upset so fast over something no one would see coming, he'd loose the ability to actually communicate that he was mad! Now, he's a VERY articulate young man, so it took everyone a while to figure out what was happening. We used a similar system from Speech Lady Liz! With JD, he just couldn't communicate period what his issue was so, for him, we did the faces chart. You'll find this great idea over on her I feel today post. 

If your curious about what sounds or letter sounds your child should be making correctly at what age, here is a great printable from Mommy Speech Therapy.

If you're concerned that your child is a later talker, here's a great post from Child Talk to give you some pointers. The best advice I can give is like a recent post I read, Repeat, Repeat, Repeat - everything as much as you can! If you've done all of these things, and you're concerned about your child's hearing, by all means take them in!!

If you find out that your child is Hard of Hearing or Deaf. It's really not the end of the world. I promise you that! A lot of people I knew growing up and have come to meet over the years are Deaf and PROUD of it. Truth be told, in some ways I envy the Deaf world! As a hearing mother I will never fully be a part of the deaf community but, I kind of get a hall pass on occasion! :)  Which is nice and the support you'll find within the community is.....overwhelming! It's truly an amazing experience and though as a hearing person, it makes me sad that my son will never really hear how beautiful the birds are, his life experiences will be richer and more complex at an earlier age than I could have ever known. So, don't be afraid to jump in with both feet, it's the one time I fully advocate jumping in without looking!

Here's a great starting point for you though, Hear My Hands has a great post to get you started. With information on ASL, the Deaf community, etc.

One of their resources listed there is ASL Pro. Let me tell you how awesome this site has been for me! You not only get to SEE how the hands/fingers move but, when I tell you that facial expressions can be paramount sometimes, I'm not joking! So, it's nice to see how the face moves with the sign. 

Another great site for trying to find support for you and your family is Hands and Voices. At least for me anyway, finding local support to help with my learning curve was invaluable! 

Sign language doesn't have to be just for the Hard of Hearing or Deaf kiddos. With my youngest, it enabled him to communicate where he couldn't do it verbally before. So, if your child has a communication issue and is capable of at least understanding sign, I'd give it a try. Another thing I can tell you, if your child is verbal or making noises and clearly wants to communicate, I'd try picture cards. I did this with JD and suddenly he could tell me what he wanted for breakfast, lunch and dinner. The meltdowns lessened and so I moved onto picture cards for his toys, clothes, etc. It was an incredible relief I think for him. 

There are probably hundreds more links, sites and advice out there and truth be told, I've been given so much over the last several years that I cannot remember it all. If you've got any sites, advice or ideas, feel free to share! I know I'd appreciate it! 

The Pluses of Doing Picture Cards!

It's hard to be a mom of two crazy tornadoes,  run two blogs, homeschool, be an advocate for various things,  participate in an online support group or twelve and run another online support group! Sometimes I drop a ball or two! Unfortunately, this blog is often the ball that gets dropped!

Or I overlook something soo incredibly simple, I feel like the world's most idiotic mother! :D It's hard though between all of DW's issues and needs, trying to balance what each kiddo needs, what I need to do yet and what I've left till tomorrow. Though sometimes, I will admit that it can get almost overwhelming and occasionally I will visit denial land where one or both boys are just fine and they are not. Hence, I drop a ball. :\

Case in point, my youngest JD....he was thought to have Apraxia of Speech but, now they are leaning more towards a language disorder. Basically,  there is some portion of his brain that cannot "hear" correctly, even though his hearing is fine. Somewhere in there word retrieval is also suffering, as well as the words coming out don't come out or don't come out entirely correct. So, while the rest of the world, including myself, thinks he is saying one thing, most often he is saying another. Or he repeats the end of a sentence said to him, or even his own, because this is all he can process. So communication with him has been tough to say the least. He never hears anyone call his name and unless you are practically nose to nose with him and have eye contact! It is amusing and stressful all rolled into one.

Anyway, we've made what to the outside world I think, would seem like a baby step but, here between us, it is a HUGE thing. It was suggested that I make picture cards for him by his SLP and then by some other mothers who have children with similar language problems, for meal times, and various other things like toys, clothes, etc. So, today was the first time I implemented it during meal time and now I am kicking myself for not having done it sooner!

JD was calm and was able to tell me what he wanted! He even ate all of his meal!! Without issues and without  eating the "good stuff" first. He picked a sandwich, peaches and gluten free pretzels. Instead of eating the peaches first and then yelling, he ate his sandwich first, then his pretzels and then the peaches. Not a thing was left over! AND neither, DW nor I had to redirect him to eat! It was fantastic!! Two meals went by with no yelling, no begging, pleading or chasing after him with bits of food!

As a bonus, DW gets to pick out his food for the entire day and this way, he knows it's coming, he's prepared and if he refuses to eat, it is his own fault. He's responded so well to it, that he's not had an empty plate all day! :)

JD was so pleased to be understood though, that he decided that the next thing he was going to eat was......you guessed it, Cheerios! ;)

10 Things I Want Everyone to Know About My Boys on the SPD Blogger Network

Check out my newest post on the SPD Blogger Network right here. Almost everything anyone with an special needs kiddo has ever wanted to say to friend, family and/or strangers. Head over there and check it out if you can!

Different is the New Normal

It's finally out! Here's the link to: Different is the New Normal, featuring Ariel Small among other children with Tourette Syndrome.

Totally worth checking out if you want to know more about Tourette Syndrome, you want to show your kiddos, or share with family and friends!

http://watch.thirteen.org/video/2135738235

How Things are Going

It's been a while since I've posted. Life is SOOO crazy right now! A good crazy though! :) A quick update:

JD finally at 3yrs old got his very first cold. His very first anything really, the poor guy has NEVER been sick! Which was funny as heck because he didn't recognize snot! :D He was freaking out over it! Like it was some kind of evil alien attached to his face. It was really priceless, up until he then shared it with me and then his big brother. Though for the first time ever, DW got it and it was like some kind of gnat to him. He was done in two days! Though it did give me an idea as to how delicate his stomach really is. Messed his GI tract up something terrible. Only yesterday did he seem to get right where his tummy was concerned.

DW had a myriad of tests run. There is worry about his once again dropping weight and that he's slowly dropping down the growth chart. All tests, save one came back alright. His thyroid showed some minor issues but, it would explain his inability to put weight on and problems with his growth. He has to go back in December to have another blood test to confirm whether his reading was a fluke or he has a problem.

He had some allergy tests done because something he ate several weeks back, caused his throat to feel tight. They all came back normal. Which was good but, worrisome as the doc and I have no idea what made him react that way. 

On top of this, I've developed a cleaning bug. I literally spend all day cleaning, reorganizing and getting every corner of the house all perfect. Or at least perfect to me! :) I'm back to baking like a mad woman, cooking like a nutter and redoing rooms. I'm happier than I've been in years! It feels good to do the things you were born to do, to do the things that make you happy and be organized on top of it all. For the first time in years, I'm juggling a bunch of balls and feel like I actually can juggle them all!

DW's lost his third tooth. His tics ramped up for a while. I think it was his new meds, a combo of the first med and then this one we tried. He's settled down though now, his tics way more obvious than they have been in almost a year but, nothing too terrible for him. He now brings them up when he's upset, excited or nervous but, he's almost like a normal kiddo now. He goes to sleep by 9pm, his bedtime as little brother's is at 8:30. He is social to people now, which he wasn't so much before. He's just happier overall. Which is a good thing to see. 

For now, this moment, life is incredible and I've never felt more lucky. :)

My Blog Contribution is Up for the SPDBN!

My contribution for the SPDBN (Sensory Processing Disorder Blogger Network) is up today! I'm so excited. So, if anyone out here in cyber space wants a peek into the world of SPD, come over and check it out!

The Cold, The Hot and The Crunchy!

Sometimes you need a secretary

I love my boys' OT/PT/SLP place. For the uninitiated OT: Occupational therapy, PT: Physical therapy and SLP: speech language pathology. I love these women and think that they deserve so much more credit, rewards and acknowledgment than they get.

Today, after DW's OT and JD's OT/SLP session, the OTs came out to talk to me. Telling me that I need to start up brushing again, something that in the chaos of my life after JD was born, I'd kind of just phased out. This time I need to do it for both boys. Ideally she would like every couple of hours, which is where we were before but, as there are two of them, we homeschool and it's crazy, so she requested that it get done at least before every meal.

Ok, alright, I'm doing the schedule for the start of our upcoming school year anyway, I can work this in. Just need to remember that JD can only tolerate it over his clothes except on his feet. DW can do it bare armed, legged and back but, once you remove his braces, he has to have his socks on.....ok, mental note made.

She then said, as if it is nothing in addition to all that we've talked about (and it's not all noted here), back to joint compression for both boys, how many times a day I managed to forget to ask, though I know it is probably a few times a day as it was before. Another mental note made.

DW's OT comes out and hands me a paper. Both OTs have noticed that he was chewing on his fingers finally. Even though I have mentioned that he will chew them until they bleed. I explained that I had bought a bunch of chewies from a therapy shop online but, suddenly he's stopped using them. She tells me that this is a list of items that may help with his oral issues.

I got home and read the list and almost died laughing. Most everything on there he will not touch, use or smell! :D Out of at least 30 items on that list, it came down to pickles, lemon drops and gummy worms & bears. These are the only ones I can easily see him chewing on. Even the lemon drops are pushing it, I know he will surely suck on them but, biting into a hard thing, so far out of his comfort zone. :S

My only hope is that I've spent the better part of 2 weeks now convincing him to try bubble gum. He's still on the fence about it but, I know if I buy some and have it on hand now, he might decide to give it a go.

So, now I have calendar in every room of the house, one on my computer and have to buy a personal one now too. With notes for 3+ appts a week, therapies that need to be done daily, regular scheduled OT stuff that we do at home, like bed jumping, couch to crash pad, etc. homeschool schedule, other doc appts, etc. Notes on every calendar for things from therapies to be done at home to grocery lists - including the suggested items that came on the list, allergy free foods, etc. It might be overkill to some but, when you're life is as crazy as this one is, there is no lengths I won't go to, to be prepared! :D



I've decided that now I need a chauffeur and a secretary! :D