Make it double

Now that Andy is 3 therapists and doctors are more comfortable making a diagnosis.  After a weeks worth of testing it did not come to a surprise that Andy was diagnosed with severe apraxia of speech along with gross and fine motor dyspraxia.  This is a place we have been before with Abby.  Abby as a reminder was diagnosed with moderate CAS and fine motor dyspraxia at the age of 3 1/2.

Andy's experience is much different then Abby's even though they are both diagnosed with the same motor planning disorders.  Abby was a lot more social and little more "willing" to learn.  Andy is a bit more stubborn and although he craves social interaction typically refuses to use the words he has to communicate.  Andy does use sign though which is something Abby never needed to do.  He has multiple adapted signs.  We call them adapted signs because along with not being able to speak age appropriately Andy also has a hard time with fine and gross motor planning.  This includes his finger movements and hand movements.  So to sign "water" you may make a "w" with your fingers and bring them to your chin; Andy makes a "L" with his fingers and sometimes makes it to his chin and sometimes makes it to his cheek.  If you see Andy frequently you will recognize his generalized signs but it is probably more the truth that as someone who is not frequently around Andy that his attempts at communicated will not be understood.

Andy receives private speech therapy twice a week and private occupational therapy once a week.  He has been receiving these services since he was 15 months old.  Now that he is school age he also gets speech at school a long with occupational therapy consultation to teach his teachers and paras how to help him within the classroom.  This is a lot of therapy.  We are making progress but the process is very slow in Andy's case.

I sometimes wonder what he will say when he finally learns to use the words that he knows.  I wonder if he will express how amazing cars, trains and planes are to him.  I can not wait to have a conversation with him like the conversations I have with his sister.  I hope though that he will never lose his handsome facial expressions.  I always want to see that dimpled smile and the sparkle in his eyes.  I will always cherish his open mouth smile and his handsome little pout.  I may not know what exactly he wants but I am thrilled that most of his expressions are ones of joy.  I must be doing something right. 

Sensory Letdown

As a mother of a child with sensory defensiveness I am asked about SPD it seems on a daily basis and on most days I have a whole speech prepared, but lately I have been able to just point to Abby and say that is what SPD looks like.  The truth is that SPD has become a part of our family's daily living.  Everyday there seems to be something that doesn't go as planned or a noise that we find offensive, a smell that we can not cope with, a food that is not allowed within our sight.  Note that I use "we", "our", "us".  SPD does not just effect Abby - it effects everyone in her family and it effects everyone around her.

Lately Abby's sensory needs have been heightened, due to several different factors: schedule change, school changing, therapist changing, vacations etc.  She has been overstimulated for the past month and in the past day has been coming down - what I call sensory letdown.

The best way I can give you a visual of what Abby is like when she is on sensory overload is this: imagine a cat - now imagine a cat after a catnip treat and you have sensory overload.  She can not calm her body - she hops, she chews, she bites, she pinches, she talks (non-stop), she is completely out of control.  This is the behavior that is the hardest to deal with from a parents point of view.  She is unable to sleep and unable to stop talking and as a parent you can not take much more, you pray every night that it will stop, you pull out the bubble mountain, the rice bin, the balloon, the brush, the trampoline.  As a mom you try everything in the book and it still doesn't stop.  You are forced to listen to her talk to herself until the early morning, sleeping for short amounts of time.  She explains that there is so much to see and so much to hear and so much to do.  She becomes anxious about what to wear, what to eat, what time she goes to school, when is her birthday: how far away is her birthday, months, days, hours.  You might actually think she is OCD at times but she is just trying to get ahold of her surroundings.  It is very exhausting for her at times and definitely tiring for her family.

I become angry and frustrated when she is overstimulated.  I feel bad for her and I feel bad for me and I feel bad for her brothers and I feel helpless when she is like this.   All the at-home therapies and techniques just do not seem to work for her when she is that out of control.  This is when her private OT sessions are a godsend.  At these times is when I realize why SPD is so often confused with ADHD.

As hard as sensory overstimulation is there is another state of SPD that is so much harder for me as a mother and Abby and that is the letdown.  Today Abby is in the sensory letdown.  Her body is exhausted and fatigued.  Her other senses are over sensitive.  The circles around her eyes take up it seems her whole face.  She is emotionally shot, physically exhausted and 100% overwhelmed.

Abby is having a very hard time with touch tonight. Abby was playing with her brother and he pushed her playfully this made her burst into tears and run screaming to me to let me know that Andy hurt her.  During teeth brushing she put the toothbrush in her mouth but said brushing hurt too much.  She asked if I could hug her but then said I was hugging her too hard and to "do it softer", her "softer" was me hovering around her.

Abby is also having a hard time with her auditory input.  She complained verbally and covered her ears about multiple sounds tonight, these sounds include: daddy frying up hamburgers, the A/C, the water running from the faucet, the sound of the light in the bathroom and the sound of the dryer.  Needless to say we did not vacuum tonight and she outright refused to flush the toilet.

Tonight Abby picked a very quiet story, she made me turn her music up (I think this helps with the white noise) and was very happy to have the light turned out.  Her body relaxed under the weighted blanket, which had to be placed no higher then her waist because it was making her not be able to breathe, but she can not sleep without it.  She fell asleep instantly it seemed.

This is the time I really remember how hard the things in her daily life can be.  She will be in this letdown phase for the next few days.  It will be emotional for me as her mother especially when I just want to hold her and comfort her but know that she will find that uncomfortable even though she too wants it.  As her mother I know that her body and mind needs to reset and I know how good her days will be when it does.  But I also fear the next overstimulation and letdown knowing that it will come but not knowing when.  

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!!!