Its not all bad

I know my posts lately have been a little on the negative side.  I don't purposely intend for that but sometimes blogging is a good way to vent.

Andrew ran a high fever last night so we laid low today.  This was needed.  There was no outside stimulation for Abigail today so it was a very quiet day.  We colored, we danced, we watched sandcastles being built on TV.  We talked about things 5 year olds and moms talk about.  I only had to redirect her a few times and not once had to send her to her room.  It was amazing and it was needed by this Mama.

Andrews temperature broke this morning and he also laid low, although extremely clingy but that is to be expected.  There will always be room in my arms - even if all three climb up in them.

We had an amazing moment today with Andy.  Abby came running in while I was folding laundry and exclaimed "Andy said Bus!!"  My initial response was "sure he did" but I had to find out so I went into the other room where the kids were playing cars.  I sat down with them and started to play.  "Andy can I have the bus?" to this I get the accustomed nod.  "What is it that I want, Andy?" and low and behold he said "ssss" in which I replied "good try, it is a bus."  Andy nodded excitingly and said "Baaaa - sssss".  I would consider this a little prompting but I got ecstatic anyway.  He said Bus and he said it with little delay.

I had to give him a big hug.  We know have 4 words (well sort of): "Mama, Ba-ss (Bus), Pa - p (pop) and O - pa (open)".  Yes, they are not understood by all but the fact that he has the sounds and is trying to put them together is so exciting!

Andrew still needs a lot of prompting to try words but we are on the right track.  He has a lot of sounds he just has not quite figured out how to put them together.  I look forward to speech therapy tomorrow and what word he might develop in the short 45 minutes.

The space underneath the chair

Year 1 she cries

Year 2 she throws a fit

Year 3 she runs from the room

Year 4 she screams as she sits in my lap

Year 5 ...  She finds safety only in the space underneath a chair.  Temperature not taken, blood pressure not taken and the doctor on hands and knees checking her ears and eyes.

It's a routine yearly check up.  There is no immunization scheduled just your basic check up for school. No big deal to most kids and no big deal to Mom.  But for my princess the anxiety got to be so much that she could only find solace under a chair.  When the chair was removed she crawled under the chair I was sitting in grabbed both legs and wouldn't let go.

I have to check myself at this point - my patience weighing thin.  What do I do?  How do I comfort her and still get the appointment over with?  Thankfully, I did not have to make such a hard decision.  Abby's pediatrician got down on the floor (in her dress) and commenced the exam.

In these moments counting to 10 and taking deep breaths and stepping back is so hard for me to do.  I have learned that in these moments I am tested.  Tested as much as she is.  It is a no win.  Her pediatrician says "maybe it is time for Abby to see a development pediatrician" and I agree.

I took the info the doctor gave me in to therapy this morning.  The report from her OT is that Abby had a hard time visually today.  Her SLP reported that she was ok during speech.  They are in agreement with her pediatrician - things are getting harder.  This just confirms my fears.  

I am at the point where I do not know what is behavior and what is anxiety/SPD.  I do not know how to be mom and therapist.  How do you prepare for these moments?  How do discipline when you don't know the cause?

Somedays I wish I could crawl underneath that chair with her...

Ode to "MAAAA"

"MAAAAA" comes the noise of my 2 1/2 year old from his bedroom when he hears his father coming home for the day.  "MAAA, MAAA!!!"  The excitement as he runs to the door is all over his face, in his wide eyes and his opened mouth smile.

Some people may look at my little man and wonder why "MAA"?  I look at my little man and cheer for it.  The truth is Andy just started saying sounds in the past few months.  He started private speech therapy in May and ever since his sounds are blossoming.  I do not mind being the only mom in the room proud of his animal sounds even though they do not come out just right.  I am just so happy to see him try them.

My husband doesn't mind being called "MAA" either because at least Andy calls him.

Andy's diagnosis????  He doesn't have one.  The therapist are pretty certain that Andy has CAS but they are cautious to diagnose him.  For now they treat him for severe language delay and see how he progresses.

More to come from Andy in the next months I am sure.  For now, I do not mind getting a prompted "Pa, ah, Pa" (pop) or a "O, Pa" (open).  It was a 10 month battle to get him to imitate... and now that he does it game on!!!

Adaption

"Adaption" as grown ups we take adapting to our surroundings, to our life changes and to the world around us in easy strides.  A little girl with SPD finds adapting to be just as challenging as walking for the first time.  Every day brings a new change to adapt to and so goes our journey.

Since last I blogged we have had many changes in our family; some progressive and some concerning. So let me catch up a bit.  Abby continues with ST, OT and is now receiving PT services, she has added a few more fancy terms of why she is the way she is, adding to CAS is SPD, Dyspraxia, & severe hypotonia.  Andy is still not speaking @ 27mths which has concerned his therapists enough to set in motion a frequent therapy regimen.  Possibly the biggest change we have had is that we have introduced a new little one into our family: Archer who is now just under 4mths.

I will post more about Andy's progress in a separate post.  I have titled this post "adaption" and although change effects everyone including my 2 year old it seems to be an ongoing battle for Abigail.

This year Abby will need to adjust to many things, a new therapist, a new classroom, a new teacher, new friends and most of all a new brother.  The changes that are happening in her life seem to be elevating her already challenged cooping skills.  She has becoming "needy" at home.  Seeking attention in anyway she can - throughout the day and throughout the night.  It does not stop.  She has developed what I refer to as safe word/phrases that helps her when she needs more stimulation.  "applesauce, applesauce, applesauce" over and over and over again for no seen reason.  

Now turning 5 I have been told by therapists, doctors and other mothers that Abby should be able to hold a conversation for a few minutes, she should be able to watch a full TV episode, she should be able to sit for at least 15 minutes in an organized circle.  These are things that are so hard for my princess to do.  She needs to be jumping, swinging, standing on her head.  We have an everyday routine which puts her in bed by 8p yet she can not stop her body and her mouth until close to 11p.  

With a new little one in the house I do have to say that my patience with this symptom of SPD is very thin.  I ask myself "why can't she just stop, I am telling her to stop".  It rains one day and we have anxiety over umbrellas, it's sunny out so we have anxiety over whether we will go to the pool or not.  yes even the weather effects her and the way she will handle the day.  

Good days are far and in between at this point and I find myself frustrated to the point of yelling.  Then something happens that pulls me out of my own frustration and into hers.  Like not being able to move because there is a truck in the parking lot and it is idling and the sound of the engine, the smoke coming out of the muffler, and the smell the diesel is producing is just too overwhelming.  So we stop and we wait for these things to take root in our body.  We wait for our noses to acclimate, for our ears to stop vibrating and for our eyes to process what these new things are.  We wait, just a minute, sometimes even 30 seconds - which seems like an eternity to others.  Andy holds her hand and I pat her head and we walk into the building leaving the truck behind.  This truck causes a domino effect for the rest of the day - its like she has just taken a big swig of Red Bull.  She seeks stimulation continuously the rest of the day.  How frustrating it must be to not be able to stop... 

Those wobbly legs

Abby finally had her OT evaluation today.  The OT said she will be observing Abby some more due to concerns with her muscle tone.

I feel terrible that this whole time I thought Abby was lazy.  The dragging of the feet - the not sitting up straight - the constant crying during her dance classes - "Its too hard Mama".  I was prepared for the sensory concerns.  But I was not prepared to hear about concerns regarding Abby's physical being.  She has always been an active healthy kid.  A mellow kid compared to her brother but still energetic.

As I type this I see her laying down instead of sitting, her limbs just as lax as can be.  Is this just because she is relaxed?  Or is this her problem with muscle tone?  How can I help??  What can I do to help her?  So many questions are gathered in this concern.  So many questions that must wait until net week to be answered.

Another bump in our journey with Apraxia.

What do you want?

"EH" - "EH" - "EHHHHH" this is the sound you can hear from my 15 month old throughout the day.  Does he want food?  Does he want to sleep? Does he want a toy?  What is it that he wants?  I can tell you on most days I lose a little bit of the patience that I have built up over time.  "What do you want!?!?!"

It is like when you brought your newborn home.  Every sound that new precious package made you soon found out meant food, sleep, bond time, playtime.  I feel this 15 months later.  Like I am trying to guess what every cry or sound means.  The problem lies in the fact that my little man has specific wants now.  He wants "that" toy or "that" thing to eat.  It's a guessing game - a long, long, long guessing game.  Eventually you will get what he wants but it takes a while - or he just gives up on you.

So many of you may be saying "well, Melissa, come on he is only 15 months".  I respond by saying that that is what we told ourselves about Abby for the longest time.  Well she is only 18 mths, she's only 2 year, she's only 3.  When does it end??  I refuse to play that game.  Andrew is trying to tell us what he needs - but all that is coming out is that he needs something.

Finger pointing - thats what I want!!  I want him to point to what he wants.  Point to what he needs.  This most children do at this age - but expressively, Andy does not use this communication skill.

The state we live in offers an early development program called Birth to 3.  Given that Abby has CAS we thought that we should have Andy evaluated.  Just before Andy turned 15 months B23 came to evaluate Andy for any developmental concerns.  There are many areas of concern regarding Andy.  After Andy's 15 month check up with the pediatrician they are also concerned about Andy's development.

Most of the concerns regarding Andrew are the following:
In Communication:
Slightly below average in Receptive Language: this is the understanding of language that others speak
Significantly below average in Expressing Language: this is is the language that an individual uses to make verbalizations and to use words.
In Adaptive (self - Help) - this addresses eating, dressing, toileting and personal responsibility.
Andy was assessed to be significantly below average.

The plan??  Well we have a few more tests to have done on Andy - a Oral Motor Control test and a hearing test.  However, the group found Andy significantly behind and therefore will start working with us (Andy & his family) on adaptive and communication issues.

Andy's service coordinator and I spoke at length yesterday about what the needs of Andy and the needs of his family is at this point in time.  The biggest thing is the ability to communicate.  Although CAS is not diagnosed until much later - there was talk about how the areas specific to his delays are also areas of delay in children with CAS.  Because of that - the first thing we will try is getting Andy to point to pictures.  The other goal is to introduce signing.  Andy will start receiving services in 2 weeks.  We are hoping that we can at least get Andy to start gesturing.

Until then we will try our best to understand "EH".

The Degree of Apraxia

Children with Apraxia has varying degrees of other issues.  I have spoken to some parents who also experience physical praxis issues, severe ADD and other planning, sensory and attention issues.  I am thankful that Abby is not at the severe end of these delicate co-disorders.

If someone was to ask us a year ago if we thought Abby had attention issues I think it fair to say that we would question whether we knew that answer or not.  What is normal 3 year olds behavior and what is not?  A question we are constantly asking ourselves, Abby's therapists and doctors.  There would be times where Abby would not pay attention to anything; although there were other times where she was attentively involved in one activity.  So how did we break the code and what was our observations?  We decided that Abby was a typical 3 year old.  If something did not interest her, if she didn't want to do one specific thing then she would venture elsewhere.  However, if you found something she enjoyed, something that interested her then she would be completely attentive.  No ADD for this little girl!

Follow through however is something Abby lacks.  Directions need to be given in one action prompts.  "Abby pick up the doll" once the doll is picked up we can say "Abby put the doll in the toy box."  The difficulty here is that something can not be vague.  She doesn't understand underlying meaning such as "go clean your room" or "pick up the toys".  Originally the concern was if Abby's receptive language was delaying - but when asking meaning of words and phrases she excelled.   Her only area of lacking was in directions.  First do this and then do this would translate into do something else.  She did not get frustrated with this issue - however, we parents got extremely frustrated.  Now at 4 we can give her 2 alike commands "go pick up that doll and that toy" or "go pick up all the dolls" when she goes to get the items we can then say "put the toys in the toy box."  However, we can not give both commands at once. When Abby was diagnosed Apraxia we realized that this may be a planning issue.  She understands what we are saying she just can not make a plan of action to complete the command.

Ah, Sensory.  A few of my gifted mother friends deal with severe sensory issues.  The most sever being on the Autism spectrum.  So I never thought that my little girl could have such sensory issues.  Or at least she never openly expressed them.  I should scratch that last sentence.  We didn't know she was expressing sensory issues we just thought she was being a kid.

"The white diet" - yes this is actually what pediatricians call it.  It consists of pasta, potato, apples, milk, etc etc etc.  This is what we were told was normal for some children.  Shortly after the bottle was taken away - Abby refused milk.  Abby never tolerated protein other then chicken or egg - even when she was taking those first bites of food.  At about 1 1/2 we experienced the no temp issues.  If it was cold or it was luke warm it was a no go!  Everything needed to be room temperature; juice, noodles, fruit.  At about 2 1/2 Abby developed the ability to withstand cold foods - now we introduced yogurt, popsicles, cold fruit.  However, to this day, now 4, she will not do hot foods.  So we still cool down all her dinner - I should say her noodles and chicken.

Textures....  An evil thing in this house.  Abby can not stand different textures in her mouth.  Let me use toothpaste as a prime example.  Abby tolerates training toothpaste, smooth and water like.  She is 4 now she is suppose to have made the move to adult toothpaste.  She screams... cries... chokes... gags.  It is a drama fest when we try to used adult toothpaste.  We have tried every type - different colors, different textures, different tastes.  Mouthwash - out of the question.  She complains that it hurts (a common complaint on foods or items that have different textures - "hurts".)

Noises.... Abby loves to dance.  She was successful in her little tutu performing her dance on stage.  We have to thank her dance instructor for her success.  During dance class the instructor noticed that Abby rarely put her hands down.  They were always somewhere on her face, most of the time on her ears.  As the recital drew near and the music got louder and louder the more Abby withdrew from the moves and held her head.  Abby's dance instructor has a son with Autism and put a plan into action.  Every class as the music started getting louder she started to put more cotton in Abby's ears, and then she started taking the cotton away.  Abby stood on stage 6 mths later performing every move with no cotton in her ears.  It's a great experience right?  Well it seemed that over time Abby became used to the music and sound of the tap shoes - therefore not needing the cotton.  But... there is always a but when sensory issues rear their head.  The but here is that - she was used to one sound - tap shoes and one song.  Shortly after this we notice her holding her ears a lot.  The sound of loud laughter, the loudness of a movie theater, the noise of children at play.  She likes these activities but she can not enjoy them because her hands are always at her ears.  I feel bad for her.  I want to cry.  That is no way to live with your hands always at your ears.  Abby will start working with an OT as soon as the school year begins.  I am hoping we can make Abby's life a little more joyful.

Along with the specific speech delay's Abby shows other areas of concern such as texture sensory, audio sensory and temperature sensory - but these are all things we can concur - all things we can work with.  Abby can learn - we have seen it with the leaps and bounds she has made within her speech and I believe with all my heart that we will see it when she starts working with an OT.  For now I shall carry some cotton in a small little plastic bag in a small pocket in my purse for anytime my daughter needs a break.  For now I will give direction one step at a time - one item at a time.  For now I will feed her chicken and noodles and make sure she takes her vitamins.  The Lord gave the me gift of a daughter and the Lord gave me the patience to withstand the little bumps.  The Lord gave my daughter the will to succeed and the Lord will see that she does.