That Moment

Parents who have children with higher needs seem to always be strong.  They trudge through the rough therapy's the ever changing school district, the high maintenance tantrums.  They deal with family and friends that do not understand or friends and family who underplay the severity or the need (grandparents are notorious for this).  They stiffen their shoulders and they rein in their tempers, they build walls; big, tall, thick ones.  Then at an inopportune time it collapses. 

Abby had Tap tonight...  she has been assigned the back row end once again.  2 years of having not quite being able to see her at the recital I asked the teacher if she could reassign her.  I know dance is hard for her - specific steps that she can do somedays and not others.  I understand that - but for once I want to see my daughter dance and I do not think that is so much to ask for my $42/mth and $200 costume fee.  I know the teacher didn't mean to insinuate that Abby would never be good - but that is how this mom heard it.  And that is all it took for me to break.  Tears flowed...  These things are always going to be hard for my princess.  Dance requires her to shuffle step but she is unable to stop the shuffle.  Golf requires her to stop her swing but she is unable to stop the movement, talking requires that she stop her sounds but that sometimes doesn't happen.  The thing is - on some days she is right on... one of the best in her class but other days she just can not motor plan. 

So as I see everyone laugh and giggle at my 7 mth old waving hello (something my other 2 never did this early) and I am so proud but at the same time I cry because I realize just how hard things are for a child with motor planning issues.  I cry because I have 2 little ones who must battle just to "keep up". And I cry because I am glad Ari shows no sign of these problem - and know how horrible that sounds.

I had that moment today...  that moment when I realized that all these therapies can not fix that some things will always be hard for Abby and Andy.  No matter how much I sometimes pretend it will not.

The schooling Princess

I am not even going to sugar coat it - since school has started home life has become H-E-L-L.  The school reports that they do not have any problems with Abby all day but then she comes home and is a complete terror.  The school does not offer her OT or PT because they believe that her sensory issues do not effect her schooling.  I have the hardest time believing that.

Abby returns from school in such a rage that we experience tantrums, punching, yelling, throwing and seeing our daughter unable to control her body or behavior.  When I asked Abby's OT what we could do she stated a few options but the thing that would be best is if Abby got some sensory time out at school.  

I am at a loss to how to get this...  and next year she will be going full day.  I am actually tempted to keep her home.  I thought the best thing for her was the social environment - an outside teacher and learning through public school is what I thought would be right.  But if she can not sit at circle time and comes home unable to control herself and the school is unable to help - what decisions do I have??

I am not saying that Abby doesn't act out when there is no school - but not as extremely as she does when she does have school.  Her OT says that Abby knows what is acceptable and not acceptable at school and so she suppresses her needs.  Add that to thinking about her speech and her body position and constantly being redirected - "do not sit W", "I not Im", "fix your feet" etc etc.  I understand why she explodes at the end of the day.  She gets the corrections at home too but I think the rewards are a lot greater at home.

I am again at a complete loss on what to do....

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...