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.