Whelmed…a Bit Overly

I knew going in that this was all a process; but not just a process, but a never-ending process. Never-ending…

It all started the day of my son’s 2-Year-Well-Child Exam; questions, lots of questions. Then referrals. Then phone calls. Then more referrals. Then more phone calls. To this day, I am still in this never-ending cycle; but wait, there’s more. The paperwork. I cannot even begin to accurately describe how much paperwork. Paperwork sent to me before his referral appointments. Paperwork filled out at his appointments. Paperwork filled out for LifeScape. Paperwork filled out for the State. Paperwork filled out for the school. Paperwork I have to have others do. Then, scheduling the appointments themselves is a challenge between work, my husband’s work, when I have daycare, when I have someone to watch my other child, having the money to put gas in the car to get to appointments, and so on. So, yes, I’m a bit overwhelmed. I’m assuming I’ll get used to this, and it will become my new normal. I have so many new contacts in my phone…

As I mentioned in my very first blog post, I am what I like to call a “seasonally single parent”. In other words, in the months of March – September my husbands work comes first, no matter what. He does his best to be where he can when he can, but him working is crucial for us to keep things as they are with my getting to stay home 4-5 days a week. Now that we know that my son needs physical, occupational, and speech therapy, it is even more crucial that we keep our schedule this way, just to be able to have one of us available to take him to appointments. It’s hard. My husband is sometimes gone several day sand nights at a time, and almost always gone sunup to well past sundown. I consult with him as often as I can when it comes to making decisions about our children, but often times it leaves a lot of the decision making to me. I’m sure that one day all of his extremely hard work will payoff, and we will be able to live comfortably. We have added expenses now, but we will be able to make do. I’m sure of it. 

The Process

One would think that you see that your child has developmental delays, you then see a doctor, get a diagnosis, set up what needs to be done, and its done, but that is in no way the case with autism. After expressing our concerns, we were then referred to LifeScape in Rapid City, SD, for an autism “screening”. At this autism “screening”, we learned that he had many “markers” for autism and that he would need three separate evaluations for physical, occupational, and speech therapy, and that he would need an autism “screening”. Does this even make sense? All we learned at his screening was what we had already learned at his 2-Year-Well-Child Exam, – that he has developmental delays and likely has autism. They could not tell us if they felt he had autism or if he likely had autism or anything of that sort, just that he needed an autism “screening” because he had so many “markers” aka red flags. I have to admit, immediately after this “screening” I was super confused. What I do know now, is that he is not “officially” diagnosed with autism as of yet even, but he is starting therapy immediately, as he definitely needs help. Like I said, it’s a process, a sometimes frustrating one. They informed us that right now the diagnosis doesn’t really matter, he just needs help. I agree…

We then had 3 separate appointments at LifeScape in Rapid City for his therapy evaluations. There were three of them; physical therapy, occupational therapy, and speech therapy. It was found that he needs to have all 3 therapies on a regular (most likely weekly) basis starting as soon as possible.

Now, the autism “evaluation” is scheduled for mid-November at LifeScape in Sioux Falls, SD. We chose to have him evaluated in Sioux Falls, SD, because the Rapid City LifeScape is scheduled out on autism “evaluations” until 2019 sometime. So, come mid-November, he will be seen at LifeScape in Sioux Falls, SD, where he will play and interact with a therapist, a physical therapist, an occupational therapist, and a speech therapist all at once in a four hour time frame. After this, he will have an “official” diagnosis and we will know where he falls on the spectrum and have a little more information. He is scheduled to start therapy before this evaluation, as mentioned above.

Then South Dakota has what they call the Birth to 3 Program. Your child is evaluated at the local school and you are assigned a caseworker to help advocate for your child and to explain and advise you of the resources out there for families with children with special needs. You also work on your child’s plan for education, which is revised and reworked very often to keep your child on the right path for the way they learn. We start evaluations for this tomorrow, and have all the paperwork done, so far. There are also opportunities for therapists to see your child in your home or at daycare until they turn the age of three.

It seems so backwards. I am meeting at the school regarding education for my second child before my first…

My Army

As overwhelming and confusing as this all is, I am certain we will get a grasp on all of it and it will all become second nature. That being said, there is absolutely no way that things would have worked out the way that they have so far without the help of my family, my daycare providers, and my bosses at work. My parents put in a lot of time and help me out a lot. They are not just “watching the grandkids”. It takes extreme patience and understanding to watch my son. They aren’t just watching him, but learning to work with him. He absolutely cannot be left unsupervised unless he is in a completely “Gus proofed” room, and sometimes even then he can find something unsafe to do or get into. He cannot verbally communicate, so it can be very frustrating to figure out what he wants and needs. He is very curious and has some destructive behaviors. He never stops moving unless he is sleeping. Plus, he has a 3-year-old sibling that needs attention, too, which is so important to provide as well. I can’t just take both of my kids places. My son will “bolt” aka run off without return or any regard for danger etc. Therefore, doing something as simple as getting a haircut or going to the grocery store can really become a chore. My parents and my sister are what make these things possible and keep him safe. For that I am already eternally grateful and know just how lucky and blessed I am. This goes for daycare, too. I know his daycare providers had to have noticed that he had some problems. I let them know what was going on once we knew, and they thanked me for telling them and have been on this journey with us 100%. Seriously, how amazing is that? I know that my son requires more work and attention, and would completely understand if they felt he’d be better off somewhere else, but they have taken this on and are willing to help in any way they can. That’s love. I know that my children’s daycare providers truly love them. That in itself is one of the biggest blessings a parent can find in a world full of so much scary. My boss and coworkers also deserve praise in being so willing to listen to me, work with me, work out a schedule with me, and always make time to talk to and interact with my littles when they are around.

Although this is a never-ending process and a life of constant learning, adjusting, and compromising, I know that I have plenty to be thankful for. Sometimes, it just helps to blow off a little steam.

– AMom’sFaithUnbroken

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