ASD and a Newborn

Caring for a newborn and parenting a child with high functioning ASD is harder than I thought it would be.  I didn't think much about the transition for Caleb being any different than his 3 other younger siblings, but I am learning almost daily how wrong I was about that.

Case in point- potty training.  When Kenna was born, Caleb was not potty training so therefore nothing to think about or be affected!  When Kylee was born, Caleb was in his one and only pre regression period of actually BEING potty trained or close to it.  When Logan was born, Caleb was full into his regression but it was busily being blamed on stress and anxiety due to the house fire so we were doing the cheerfully ignore/change/clean up method.  Stressful in a way, but not a lot of pressure involved...mostly just like having a 4 year old who wasn't potty trained which isn't even as rare as the internet super mom would like us to believe.

Now with Lucie he is still not clean and dry full-time, but instead of ignoring we are in a very intense schedule of potty training.  Between his OT home program (which includes some potty training components), his daily potty schedule (the only thing that keeps him clean and dry outside the home), and our realization how important consistency and routines are to avoiding regressions there is a lot of pressure on us as parents to keep the momentum going forward.  Now that we know the root cause (anxiety & sensory issues related to his ASD) we have a lot more to do to prevent accidents in the first place.  When we start seeing frequent accidents we know that his anxiety is peaking and we know what needs to happen to nip it.

Except with a newborn we can't always do it.

Sometimes Caleb has to wait for a meal or snack past when he would normally expect it.

Some days schoolwork is less formal than he prefers.

Daily sensory work that I normally do with him has not been consistent.

We have had other people coming and going who were not always willing or able to follow his routines.

We might usually run errands on Wednesday but end up going Thursday instead.

All of these things set Caleb back on a good day, but right now they are like a giant snowball accumulating to affect every part of him, including sleep.  We were sorting through winter clothing today so I could see who needed what and he completely lost it over an old favorite sweatsuit that was in Logan's "to grow into" pile.  He wanted it back for himself and cried on the floor for a good long time over not getting it.  On Sunday he spent half of Mass on the floor under the pew... It has literally been months since he had a fit over clothes or didn't at least sit halfway decently on a Sunday morning.  His brain is spinning and so is he.  He literally did forward rolls back and forth across the floor while reading a book a few days ago!

The good news about knowing how to fix these things is that I am not banging my head against the wall wondering what is wrong with my child (or me!) and why no one else sees it.  I know exactly what needs to happen.  The bad news is that I'm a little worried about how long it might take seeing how far backwards he has gone in just a few short weeks and knowing that we are still in post-Lucie transition mode...not even necessarily headed back up hill yet.

Many of his activities and therapies have had small breaks as well, which is probably contributing to our little backwards adventure, and as they start back up for fall I am hoping that will help move things back in the right direction!  Caleb definitely loves Lucie and hopefully all of the setbacks will be temporary!


Meredith said...

Oh, Heidi, what a time! Thanks for sharing this, so I can keep you all in prayer. I so understand what you're saying and hope that you start climbing the hill soon. Has karate started back up? I remember you saying how good that has been for him.

You're doing a great job! Count on friends to lift you in prayer!

Lisa Steger said...

Hang in there! Having a baby is definitely stressful for everyone anyone but add the postpartum hormones and everything else and it's a tornado waiting to happen. We've all be there (at least partially). It will start looking up here! One moment at a time friend!!

Heather said...

Praying for you! I know it's hard, but make sure to take time to rest for yourself!

Also: One of my husband's co-workers has a 2-3 yr. old who has just been diagnosed with ASD, they are devestated. What kind of advice/encouragement would you give to someone in this position?

Heidi said...

Thanks everyone.

Meredith- Karate is going, but our attendence hasn't been particularly great because the brakes on our truck went out and I can only take kids to activities if Tim is home since we don't all fit in the car. I think he and I could both really use to get back in a good schedule there!!

Heather I don't know if I"m a good person to give advice because I feel like such a rookie still. Truthfully just to keep pushing until you find the right programs and people to work with your child even if the first 2, 3, or more aren't the right fit for your family. Our pediatrician had to push me a little bit to keep pushing in the beginning!

Meredith said...

Heather, I have a son on the autism spectrum who was diagnosed just before he was three. I would caution against too much information at once. I have such sweet friends and family who gently send articles or share about things they've heard that are helpful. I also had one person I didn't know well inundate me with diet information, because it worked for them and they were really passionate. I am now ready to dive into diets, but at the time, I was grieving and certainly couldn't implement a difficult new way to eat! Also, don't tell them that autism is "your worst nightmare." :)

Not that you asked me, but I'd suggest a gentle presence of support, perhaps a link to autismspeaks or somewhere that they can check out on their own late at night. :) Prayer, and, heck, maybe even a meal or a gift card. Autism is expensive!