The Taynors

The Taynors

Wednesday, May 28, 2014

We always new Ryan was a little extra special

I want to make this as short and to the point as possible... I need to write it out and I want to record the process so I can refer back to it, but I could probably write for days on this topic.  But here is the story (in bullet points) about why Ryan is now recieving OT and Speech.

- From birth Ryan has always been full of challenges.  Colic, difficulty nursing, always appeared anxious, cradle cap, and eczema.  Then once he turned one we found out about the  food allergies and he has had frequent outbreaks since.  He had delayed speech issue and constant drooling.  And as he got older I was starting to get concerned about his behavior.  My mommy gut told me something else was going on.

-We had him evaluated by early intervention at 2years old, and he tested high enough to not need any services, not even for speech.

-  At about 2.5 years old, his school recommended we do a follow up speech eval because it was definitely a concern.  And they also brought up doing the full developmental evaluation because of some other minor issues they were seeing (more about this in a minute).

-He did have a speech eval in November 2013, and he started receiving speech therapy right away. 

- The speech started to improve, but like the teachers mentioned, I was also continuing to see the behaviors issues.  Finally right after his 3rd birthday we went to Children's Specialized Hospital to get a full developmental evaluation. 

-  In a minute I will list some of the things that had me concerned.  There were many days that I would think he was just being a totally normal 3 year old toddler, and then there were days that I would be so worried and keep thinking "why is he doing that".  Thats when I started asking other people their opinions- his teachers, his speech therapist, his pediatrician.  Considering he was my first child, I had no idea what was normal behavior vs. not normal.  But like I said, my gut was telling me something is going on.  Here is a list of just some of the things that caught my attention:

constantly hyper
very sensitive
very emotional
very physical
hitting and touching things constantly
constant swinging of hands, banging his head, kicking his feet
shoveling food in his mouth
talking very loudly
constant talking (even if we can't understand what he is saying)
can't sit still
never really plays with anything- just moves around the room jumping from toy to toy
multiple extreme tantrums every day
avoid big groups
gets overstimulated by large groups or loud places
over away of all noise
separates himself from friends at school
wants to hang out with the adults not kids his age
has trouble falling asleep at night (getting worse as he gets older)
still needs binky to sleep

But he is also one of the sweetest, most loving kids I have ever met.  He has the sweetest heart and he is truly a love bug.  He loves everyone, he is enthusiast about everything, he loves giving hugs and kisses, he talks about his friends all the time, he is always asking to go visit people.  He remembers everything!  If you meet him once and play with him even just for a few minutes, he will remember you and look forward to seeing you again. 

I am sure there is more- I don't have my list in front of me.  But these are just the ones that come to mind right now.

-So these can all be normal toddler behaviors, but when one child has all of these characteristics, and they have them in many different sensory areas (visual, auditory, etc), then it can be a sign of concern.

-The initial evaluation validated my concern.  We left that appointment with a diagnosis of ADHD and Sensory Processing Disorder.  I was told that they normally don't diagnose ADHD until at least 5 years old, but he had clear symptoms in every category to make a confident diagnosis now.  They also checked for signs of high functioning autism... they do not believe he is on that spectrum at this time, even though he does have a few of the traits.  Anyway I left feeling two things...first was a sense of relief.  With a diagnosis means we can get some help and hopefully make changes so that Ryan has a better chance of improving (such a bad word choice, but can't think of anything else)  as he gets older.  But also I was sad for him.  As a teacher, I can see things from the other perspective.  I remember the students with Autism and ADD and ADHD and how much they struggled in a high school setting.  I remember how they were looked at as the weird kids in class by the other students.  To think of Ryan as being anything but loved by everyone around him, made me very sad.  I hated the idea of putting a label on him at such a young age.  But like I said, he needs that label in order to receive services.

-After that appointment we were recommended for a speech eval, an Occupational therapy eval, and a pysch eval.  So far we have done the ST and OT.  But evals proved that yes he did qualify and need both therapies.  The speech eval showed him at a very high level of comprehension and intelligent (not surprised at all....he is super smart, he shocks us every day) but a low muscle tone of the mouth and jaw and trouble with annunciation.  The OT eval was more detailed.  She recommended that he come for therapy twice a week for 3 months.  The eval showed concerns with his body awareness, hyper activity, lack of focus, auditory processing, and sensory seeking behaviors.

-So that brings us to where we are now.  We are really just starting the process.  We have finished the evaluations, we are scheduled to start therapy next week, and hopefully we will see some changes.

-This week was extra hard, his behavior at home has just been wild (there is really  no other way to describe it).  He is constantly in motion, he has smashed his head into many things for no real reason, his hands and feet are out of control, he runs around just screaming random noises, he goes from being crazy to crying and apologizing within seconds.... Mike and I are at a loss.  I'm thankful that we are starting this process because I need help on how to help him at home.  Ironically, his behavior in bigger groups (play dates, birthday parties, school) has gotten better recently... its the behavior at home that has gotten out of control. 

-Lastly, as we are starting down this road, it has lead me to doing a lot of research on what I can be doing at home to compliment what they will be doing in therapy.  I have since found a tremendous amount of information and connections between nutrition, diet, the immune system, and gut health and behavior/brain disabilities such as Autism, ADHD, SPD, Asbergers.  Also the connection between chronic skin conditions and allergies. 

-That brings us back to why I brought up Ryan's health as a baby... because I am seeing how its all connected.  Immune system and gut health affects skin conditions and allergies and ultimately the brain.  Its not by chance that he has had issues with his gut, his skin, and now his brain.  Its all connected.  So its my job now to do everything I can do to improve his immune system and gut health so that he has a better chance at fighting the chronic conditions of eczema, allergies, and now ADHD.  AND I want to be more educated and proactive for Patrick so that hopefully we do not have to go down this road again.  More about how I am going about doing this to come in a later post!

Summer is a-coming...and I'm stressed

Yay, summer is here!  The weather is getting warmer, the pool is open, beach days are planned, and the weekends are filling up fast!  Sooo why am I stuck in a rut and filled with anxiety about the upcoming months?!?!

The biggest issue is the time has finally come to start making plans to return to work. June 15th I start with hair clients and then July 7 I return to the office.  I pushed it off as long as I could and we didn't win the mega millions (yet, I can still dream right), so I need to figure out the logistics of how to make this work.  I never knew before having kids how desperately I would want to be a stay at home mom.  I always assumed I would be a career women (and I have plenty of student loans and a variety of degrees to prove it).  I didn't image that I would be completely fulfilled, motivated, and overall happy by being a stay at home mom. 
Taking care of my boys, the house, my husband... its all hard work and frequently overwhelming, but its the best job I could ever ask for.  So just like when Ryan was a baby, the anticipation of going back to work is killing me!

In addition to the actual act of going back to work, I haven't figure it all out yet.  I know I have to work 20 hours a week for Dr. Rob, and 2-3 days a week for hair, and I have a certain dollar amount that I have to make each week for us to keep living with our budget (which is already pretty tight).  But I have not figured out how to make that happen.  I need more hours of child care, but paying for child care just takes away from the money I"m making.  The puzzle pieces have not worked themselves out yet.  Until I get a game planned laid out, I will continue to panic and wake up in the middle of the night with this feeling of dread.  Ugh I hate this part! 

On top of the return to work, we are also starting with Ryan's new therapy routine.  I found out today that Tuesdays, which use to be a day off to spend with the boys, will now be filled with speech and occupational therapy.  We will be at Children's Specialized Hospital from 9-10am, come home for lunch and nap, and then go back from 4-5pm.  I am still waiting to schedule one more hour of therapy at another time during the week.  That will be our routine for June-August and then we will re-evaluate at the end of the summer.  I know, I know....this may be confusing because I still have not written the post about Ryan's new diagnosis.  It's coming, I promise!  I need to write it all out soon, just to help get it off my chest.

And  another twist to this summer, it appears that two of my best friends will both be moving out of the state of New Jersey this summer (one definitely, Jackie leaves for good in like 2 weeks- and the other, Kelly,  is very probable).  This is kind of breaking my heart.  These girls are 2 of my high school BFF's that have been with me through everything the last 15 years.  Their husbands are now Mike's best buds and their kids are Ryan's best buds.... these are our go to people for everything- play dates, football Sundays, date nights, girls nights, vacations etc. etc.  I know that them moving far away isn't the end of our friendships.  Like I said they are my very best friends, distance isn't going to end that.  But it sure will change things.  I'm so happy for them, because I know how happy they are, but I am sad for me and my family.   Now Kelli and Heather- You guys better not go anywhere!!! 

So between going back to work, finding a new more hectic routine, dealing with Ryan's appointments and extra needs, my friends moving away, and oh yea- I have a new baby to take care of... this summer feels like kind of a bummer.  I"m really trying to stay focused on the positive, the fun things we have planned, but its hard right now.  Lots of prayers and positive thoughts and hopefully the anxiety will eventually melt away. 

Thursday, May 8, 2014

Patrick- 4 months whoop whoop

We have reached the 4 month mark... this is a big deal for me.  I feel like 4 months is the beginning of life getting back to normal.  Sleep is a little (very little) bit better, naps will start to fall into a routine, mommy starts to feel like her old self.  Its also scary how fast this is going.  I mean its already May... when the hell did that happen!?  I definitely think second baby grows up even faster than the first.

So here are some of the fun facts and milestones of this stage.

-Patrick weighs 14lbs and 4 oz
-We just switched him over to 3-6 month clothes, still size 2 diapers
-He is still only breastfed (wooo hoo!)
-He is a very happy, sweet baby.  Lots of smiles all day.  I am not use to a baby that just sits back and takes the world in for the most part. 
-He is starting to play with toys.  His green bouncy chair (ironically Ryan's favorite chair too) is his favorite place to hang and reach for the dangling toys above.   Thats when I get the chance to cook, straighten up, play with Ryan.
-The few times he gets upset and cries.... he really cries!  He has one of the loudest cries I have ever heard and people are frequently commenting on how loud he can be.  I am grateful he doesn't cry often!
-He has found his hands and feet and he is completely fascinated with them.
-He wants to roll, but doesn't yet.  He gets up onto his side and then just hangs out there.  I think it will happen any day.
-Tummy time is not his favorite, but mean mommy makes him do it daily.  I have a feeling he will like stomach sleeping when he finally gets comfortable with rolling back and forth.
-Cradle cap is still going strong.  Yuck, I'm over it.  I'm nervous because I know there is some connection between cradle cap and other skin issues and diet issues.  I"m just praying I can be a little more proactive so that hopefully he doens't follow the same path Ryan was on as a baby.

-We are slowly getting into a routine.  I think there is a big change between 3-4 months.  He is able to nap in the Rock N Play, not for longer than 30 minutes, but at least I can get some hands free time.  His days are also pretty regular.  He eats every 3 hours, plays about 1.5 hours, and then starts to get a little fussy for nap time.  Right now is still tricky because the naps are so quick and he doesn't wake up well rested, but we are moving in the right direction.  By the middle of the afternoon I normally give in and will get him back to sleep in my arms... I figure at least he is getting on good long nap a day.  But I am feeling more hopeful that he will be on a good morning and afternoon nap schedule soon.

-We stopped swaddling him at exactly 4 months.  He would wake up out of the swaddle and was scratching his face, and rolling onto his face... anyway it was time to move on.  Now he is in the zipadee-zizp transitions swaddle blanket (thanks jackie!).  So far so good.  He isn't sleeping totally through the night yet, but he seems to be doing okay with the transition.  I think he likes the movement.  Its a great little blanket because his arms and legs are still all zipped into the sleep sack but he is able to move around and roll.  I guess why its called a transition swaddle... its exactly that.

-Night time sleep... this kid is all over the place.  Some nights he sleeps great (like 7pm to 5:00am and then back to sleep til 7) and some nights are awful (like last night, up from 1-2am, then again at 3, and again at 4:40 and again at 5:45 am before I gave up and let him sleep with me).  I am never sure what I am going to get.  I don't normally nurse him the first time or two that he wakes up.  My rule is that if its before 4am then he can't be hungry and I try to just help soothe him back to sleep in the crib.  If its after 4am I will nurse him and lay him back down.  But there doesn't seem to be any rhyme or reason with the waking, and it doesn't seem to be a habit (like waking at 3:30am every night).  Some nights it seems like its a growth spurt, some nights it seems like early teething- it could also be that 4 month sleep regression I hear about (something in regards to going through a major brain developmental stage that interferes with their sleep)... whatever it is, I'm looking forward to moving past it.  I really can't complain, he is still much better than Ryan was at this age.... but I am really for consistent night sleeping.

-And a side note-  I don't care what anyone says, I can see the similarities between Ryan and Patrick.  There is something in the eyes, nose, mouth part of their faces, and the facial expressions that the make... I can totally see it.  Ryan was chubbier at this point, and Patrick is still darker coloring (not by much), but I think they look alike.  We will see.

Anyway, its amazing how I can't even remember life without Patrick in it.  Our life and routine got flipped upside down, and we are still adjusting to a new normal, but he just fits into our world so perfectly that I can't imagine not having him in our world.  I love him so much and his smiles are what get me through the day.  And I already love to watch him interact with Ryan.  They are going to be best buds :)