I was 5 weeks pregnant when we discovered we were expecting, we were overjoyed! I loved being pregnant, I had a bit of morning sickness at the start and dreadful heartburn but otherwise it was pretty smooth sailing. I found out I had gestational diabetes […]
When doctors told us that it was likely Mikey would have Cerebral Palsy (CP) I really didn’t know what that meant. I wanted to write this post to try and educate more people about what CP is, how it affects people and why it’s caused. […]
Never throw un-popped bubble wrap away! I received a parcel and thought I would keep the bubble wrap for Mikey to play with. He loves sounds, so sure enough when I popped the bubble wrap he thought it was hilarious! He also likes the feeling […]
We love our Firefly Playpak! Our physio kindly allowed us to borrow the playpak for a week as a try before we buy and we used it so much in that week. We took it out 4 times, to a friends house, to nanna and […]
Now that Mikey is 14 months he is sitting up a lot more with assistance from his seating systems. I recently realised I didn’t really have anything to entertain Mikey so he could play independently while seated. I am always sitting with him and putting […]
Mikey with his gorgeous friends
I was an emotional wreck for a long time after I had Mikey. I went through every emotion and it was exhausting. Just when I would pick myself up again and feel like I was OK, I would fall back into a heap all the while trying to put on a brave face so people weren’t worried about me.
At times I have felt
It’s actually quite hard writing that all down, admitting all those feelings I’ve had. I guess I want other parents to know that it’s OK to feel this way and you are definitely not alone. Trust me it gets better. I now look at that list and think it was totally reasonable for me to feel these things and I can’t believe how far I’ve come emotionally. Now I am a super mum! I am strong and working hard to do absolutely everything to make Mikey’s life amazing!
I thought it might be helpful to answer some questions that I wanted to ask people over the past 12 months.
Do the feelings go away?
For me yes some have, but I imagine some never will. They have certainly become less consuming, mostly I have become a lot better at dealing with them.
How do you deal with the unknown?
At first many people don’t receive a diagnosis for their children. A diagnosis like CP is often given when a child is 1 or 2 years old. Parents are left worrying constantly about what it all means.
I guess I have arrived at the conclusion that it doesn’t matter. You will love your child unconditionally regardless of what they can and cannot do. My son is 13 months old and we don’t know if he will walk or stand independently, or if he will ever have the fine motor skills to hold a pen and write. We will do everything we can to give him the best chance of being able to do these things, but if or when it happens doesn’t matter. We can’t change the past, and we wouldn’t want to because we just love our little man so much.
We have learnt to focus our energy on dealing with today rather than worrying about tomorrow. It took time to get to that point but we are a lot happier when we just enjoy being together.
In Australia a diagnosis can assist with funding and therapy so it is important to receive some form of diagnosis from your pediatrician to access everything your child needs.
What has helped me?
I asked to be recommended to a really good GP instead of the one I had been using for years just to fill my pill script. My GP created a mental health plan for me. I had 10 weeks of counseling that I really just used to vent, I cried a lot during those sessions.
I leaned on my husband a lot. I am lucky to have such a supportive person by my side who has picked me up so many times. He let me mope on the couch while he cooked dinner and took care of me.
I let people help me, something I am not normally good at. I let friends and family come over and watch Mikey while I could have a sleep. I visited friends who let me vent and cry and laugh.
I leave the house quite a lot. Whether it is simply going for a walk or for a picnic in the park I get out so I am not left to sit at home feeling sorry for myself. I believe getting fresh air is good medicine.
I also make sure we have down time between all of the appointments just with our little family. Sometimes I say no to invites just so we can spend time together lazing about the house, we all need to have these days.
When I was ready I let my in-laws look after Mikey without me so I could do some exercise, go to the beach or even just read a book.
I didn’t care about the housework. I put Mikey, our family and my health first. House work can always wait.
Lastly the most important thing I have done is put myself out there to meet people in similar situations. Through our early intervention appointments at the children’s hospital I have met some amazing families and this has been life changing for me. To have a support network of people with children the same age and with similar disabilities is incredible. They just get it. I encourage you to ask your therapists to put you in touch with other families, to join local disability groups or play sessions and to reach out to other parents, it might be as life changing as it has been for me.
Mikey has a Hoggi Bingo pram which is specially designed to keep him in a great position to maintain good seated posture. It is very supportive and as far as disability prams go it’s pretty nice looking. One of the downfalls of the pram is […]
Never throw un-popped bubble wrap away! I received a parcel and thought I would keep the bubble wrap for Mikey to play with. He loves sounds, so sure enough when I popped the bubble wrap he thought it was hilarious! He also likes the feeling […]
We had just received Mikey’s new pram and we were trying out the indoor base, Mikey thought it was hilarious. This was the first time I had heard this deep, hearty belly laugh!
This kid seriously loves his food. Sometimes he falls asleep while eating but he tries so hard to stay awake for one more mouthful!
I have a Pilates massage ball that is now part of Mikey’s sensory collection. It’s great to help open up his hands. Mikey loves the sound it makes when I drop it on the tray of his corner seat.
I saw an idea for a sensory ring on a parenting website and I thought that would be an awesome idea for Mikey. At first it was just to encourage him to open his hands and start to grasp but it has become a great tool to encourage him to reach. He not only plays with it lying on the floor but also when seated.
Large hula hoop
Hot glue gun
Assorted materials, I used:
I had a few bits and pieces at home and bought the rest of the materials from Spotlight. I decided to plait some of the thick wool for a different texture and I made some woolen pom poms.
Lay everything out so you know roughly what you want where and get gluing. Make sure you have contrasting textures next to each other. Attach some items loosely so they have lots of material sticking out to grab.
Let your little one explore and see what they like best.
Try them on their tummy, side and back*
Another great time to use it is when they are sitting (with or without support)
*Using a rolled up towel or small cushion is a great way to support babies on their tummy so they can lift their arms more easily and also behind their back to help with side lying.
When doctors told us that it was likely Mikey would have Cerebral Palsy (CP) I really didn’t know what that meant. I wanted to write this post to try and educate more people about what CP is, how it affects people and why it’s caused. […]
