SoftThistle Life

My Lil' Max

Autism, LifeMarylin18 Comments



Lots of things have been happening for Max recently.

He's discovered a love of the paddling pool. He won't go in it, but loves to throw balls and cups full of water around onto the deck so he can run through the water with bare feet.

He has realised that he can get into our 'snacks' cupboard in the kitchen and help himself. Which has led to a reorganisation of where all our food is kept.

He's saying new words. "One, Two, Three, GO!" is now said almost perfectly. I even heard him saying it in his cot in the morning the other day. He'll say "pizza" whenever we're near the oven.

He said "ta" the other day when I gave him a pancake!

He's 2 years and 7 months old now.

He has a tantrum whenever we don't do exactly what he wants, and some times for no reason I can fathom. Though there must be a reason, there's always a reason!

*****

Max has been on the waiting list for a few things since his appointment with the head paediatric doctor for development back in January.

Over the last month things have finally started to get going.

We have one lady, Barbara, who is part of the Preschool Home Visiting Early Years base. She is there to study/interact with him to find out how he is in general, day to day life. She is his 'advocate' when it comes to starting nursery. She'll be there at any meetings needed to discuss Max's need for an IEP (independent education plan) when he starts at nursery.

There's also Max's Speech Therapist (ST) Nikki, who's been helping us with trying to get his language going a little more since November. I feel like he's coming on really well, although there is still a long road ahead of us.

Last but not least there's Marie from Parent-to-Parent. She's here to help me out. She'll fill in DLA forms for me to ensure we get what we need to ensure I can take Max to things that otherwise would be outwith our budget, so that he can experience as much as he can. It'll also help to pay for transport for the various appointments he'll have in Perth, which is a 40 min bus ride away and includes switching buses. Marie is a sweetheart. She has a disabled daughter herself (who's now in her late teens) and so knows how stressful life can be with a child who is different from the rest. Marie is my 'advocate' so to speak.

All these women speak to each other and will also be in touch with the main assessors for Max's autism assessment which is due on June 1st.

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At the moment all the signs point to Max having ASD (autistic spectrum disorder).

I keep thinking that maybe it's not actually ASD, but a combination of language and sensory problems. At the end of the day, either way he needs more help than I can give him on my own, so I need help to make sure he's getting the best out of life he can, as I'm not entirely sure what I'm doing sometimes.

Sometimes I look back to when Zack was Max's age, and I can't help but think "why couldn't you be the same?". He tries to talk, but none of us can understand what he's saying. I just want my baby boy to call me Mamma. There's nothing wrong with wanting that so badly is there? I just want him to have as normal a life as possible.

I'm scared that he'll forever find the world hard to deal with. That I can't give him what he needs. That I'm not strong enough myself to do what needs to be done.

Sometimes I just feel so sad, seeing my lil man sitting at the kitchen table emptying and re-filling the same box full of bottle caps (his latest favourite 'toy') over and over and over again.

All I can do is stay strong for him and carry on reading his signals and what he needs from me.

And I will do that.

I will do everything I can to make sure Max has the best life he can possibly have.

Because that's what we mums do, isn't it?

Because I love him.

Because I will always love him.

Because he's my lil Max.