It’s been a while. I had my major research project for my MBA to do which took over most of my spare time, and now that it is submitted (cue joyous shrieks!!) I can come back to blogging again. We have been all doing well – Monkey has been making huge strides at therapy and is safe to say that she is officially potty trained! We of course expect some accidents here or there – but this major goal for the summer has been accomplished!!! She still needs assistance in the bathroom in terms of wiping, etc, but she will get there eventually.
Monkey has been spending a lot more time focused at the table for tasks, which is great. She can now count to 40 and is beginning to use a few new phrases and some new spontaneous language which is great. Her echolalia is still pretty strong, but she is making progress so we are pretty excited about that. J and I are also currently taking a More Than Words workshop offered through our regional provider and we have learned some new tactics to engage with Monkey and have more meaningful interactions with her.
Things are on track for school – we are supposed to have a follow up meeting with her school the last week of August to give them an update on her new skills and what they can expect. I am also hoping she can visit the classroom and meet her teacher. I am quite nervous about school actually – this will be a whole new environment with all new people for her, and I am worried about her transition. Monkey needs routine (as many kids on the spectrum do), and a whole new environment coupled with new people, and a brand new schedule might be a little more for her to handle. She will be going to JK four days a week, and her therapy centre two days a week (one day during the week and one day on the weekend). It is important for her to continue with therapy because she really has made some amazing strides this summer by having longer days there.
Her school made Monkey a social story, which I just got laminated and bound and goes over the school, her teacher and staff, the bathroom, and what she can expect. We plan on reading it to her often in the hopes that she can connect the story with her space in September. All in all – we are doing all that we can – and then some. But, it can all be so overwhelming. I constantly battle with what else could I be doing – is it enough? I feel immense guilt for being in school part time right now as I feel that my focus isn’t completely on Monkey. I know that every parent feels this way though at some point – and I have to trust that J and I are doing he best that we can.
We often get asked how Monkey is doing from family and friends and we are happy to brag about all of the things that she is doing now and how she has come so far. I met up with a dear friend a few weeks ago, and we went through this conversation and she asked “How are you doing?” I assumed this was the superficial – what’s going on type of question, so I responded that we are keeping busy. She stopped me and said “No, I mean how are you handling all of this? Are you getting all the support that you need?”. To be honest, I stopped, and I broke down in front of her – because that is the first time since Monkey’s diagnosis that anyone has asked me that.
When you have a child with special needs you feel like you are always fighting. You feel that if you let your guard down, you are being selfish – you are not doing enough. This is the pressure to always keep it together – but it is ok not to sometimes. It is ok to scream and be frustrated about wait lists that aren’t budging, if your child has a rough day, or if your debt levels rise in order to pay for therapy – because you are human. There are so many people who have said to me “I don’t know how you do it – you’re amazing”. I do it because I have to, and any other parent would do the same if they were in that situation. I think all special needs parents (hell all parents – especially mothers) become their child’s diagnosis. Of course, it has a huge affect on their lives, but people forget about the person behind it all. The fact that someone asked me how I was – made me think about how I haven’t asked myself that question in a long time.
So, my only advice to those of you who might have someone in your life with a special needs family member – ask about them. Ask how they are – don’t ask what you can do, but just be there – and listen. This journey can be quite lonely at times because there are others who don’t understand your experience. Sometimes listening and validating that it is ok to not have everything together all the time is human. Remind that person that they still exist beyond their child.
Next week J and I have taken some vacation time – and we don’t really have any plans. We just want to be together as a family and not worry about shuttling to therapy appointments, or work and just see where the days take us. (I am sure that we will hit up every splash pad/pool in the area). We are going to slow down and soak in every minute with our little Monkey and not worry about anything – just be.