Pink has been managing so well with the move and the all the changes and then today, it all came crashing down around us. Pink needs routine, she needs control over her environment and she needs warning about change. Today we tried a new little kickers class I thought Pink understood that we where going to try a new class which meant new venue, new kids and new coaches. Unfortunately Pink had not understood all of that she was expecting to see her old coaches at the new venue. My mistake and the last little change that after 3 weeks of packing, moving, new places, new people just proved to be too much.
Pink walked into the class all excited, expecting to see her old coaches but as soon as she saw the new coaches she immediately came to sit with me and as the class started and the noise started the hands went to cover the ears and she hid her face. She did manage the last 5 minutes of the class and was fine for the rest of the afternoon until around 5pm. Tiredness and complete sensory overload hit and she could not control it and just started sobbing and sobbing eventually Blue and I had her wrapped up in a duvet with our arms around her while she cried herself to sleep. I have no doubt that at some stage tonight I will need to repeat this ritual of wrapping her tightly in my arms so she can calm down enough to fall asleep again.
This is not the first time that has happened and it will not be last, we have been through this enough to know that even though she is improving in leaps and bounds there still comes a time when it just gets too much for her. I know that she is improving at managing her sensory world as the time between these “meltdowns” is getting longer and longer. So yes it does get better.
The first time I came out of a meeting with her Occupational Therapist I climbed into my car and cried. I cried because like all parents I wanted my kids to have an easy life, a life that included all of the “normal” childhood activities. But now years on I would not change our journey or anything about my wonderful gift that is my daughter. Anyway who is to say what is a “normal” childhood activity anyway. Yes we tend to avoid overcrowded child playgrounds, amusement parks and shopping centers, but honestly I would not enjoy going to those when they are crowded with screaming busy children anyway. She is a kind, gentle, loving child who loves meeting people and spending time with people but just as long as it is in a small group and not too loud or busy.
As much as I could count the negative points of spd the positive points far outnumber them (okay if you have just found out and are starting this journey you may battle to believe me but just have a little faith in your kid and in time you will agree). If you have never hear of spd have a look at the tab on top that is labelled spd it will give a brief explanation.
We have used Occupation Therapists for a number of years and they have been amasing and have taught me so much but honestly the most important thing to do is to set up your home life so that your child can thrive. Here are a few things that we do that have helped Pink
- We have a weekly schedule and she knows it.
- When we change from that schedule I try and let her know in advance and explain what is happening or where we are going (pictures help).
- I try and manage the noise in our house. We listen to music but we listen to music with a strong beat and in short bursts. I make sure she was quiet time in the house when we get back from a noisy/ busy activity. I am considerate about the noise that upsets her eg hairdryers are not used when she is in the room.
- We give her control. This is huge, the more control she has over the smaller things the easier she appears to be at managing the things that are out of her control. In the kitchen her juice, breakfast cereal, fruit and yoghurts are all within her reach and she is allowed to help herself. Her toys, books, art activities are within her reach. Pink helps me choose the evening meal, this has been a big thing as she has started eating textures which normally would have been too much for her (as a young toddler she hates the feeling of food in her mouth and throat).
- Sunglasses, hats, earmuffs are all within her reach and we never make her feel bad about using them even if it means letting her wear her sunglasses on an overcast day when no-one else has them on. Blue has been known to wear his sunglasses inside the house on a sunny day.
- Buggy board – what a life changer for the last 2 years. When we where out and about she could climb on the buggy board and hid her face when she needed a break. This allowed us to do a lot more activities and spend longer out.
- Open spaces. Kew gardens and Richmond park are just 2 of the places that she loves.
- Finding her happy places. Pink loves going to the library and looking at books, she loves the playground first thing in the morning before it gets busy, or going to a coffee shop off peak-time. Her real treats are going to a bookstore and getting to choose a book to buy or getting to buy some cupcakes. Simple treats which mean the world to her when she has done something stressful.
- Deep pressure. Tickling, light hugs or patting her back can be very unsettling for her but a tight bear bug or getting a firm back rub is relaxing. We have a trampoline and we use the brushing protocol as well.
- When we try a new activity we spend the time with her helping her relax (this could mean the entire first session curled up on my lap). I will often join in if I can and will always be her biggest fan when she tries something that pushes her limits.
- Most importantly speak only in positive words about spd. Never say something negative about spd even when you think they can not hear you (because trust me they will hear you and they will remember). Your positive attitude will be picked up and they will start to think of it as a positive instead. Pink will happily tell someone that she has super senses. She is also learning that it is okay to say “please don’t do that it hurts my ears” and that she does not need to be embarrassed to say that.
And yes I did not get to finish writing this post last night as I needed to go and give Pink some extra cuddles and I ended up sleeping in the kids room. But she had a good sleep and is already feeling better this morning, fill of smiles and playing trains with her little brother and looking forward to going to her dance class this afternoon. It does get better !!!!