BIG Meetings

I am so grateful for all of the resources and support that is available to children and families affected by autism. I do have to say though that the amount of information, appointments, testing, evaluations, conversations, applications, waiting, contacting multiple agencies, and red tape you go through is absolutely nerve racking and exhausting.

MJ was in a private preschool last year, and although he made great improvements in his language – we felt our concerns were not being addressed and we made the decision that the school we had him in was not the place to get him what he needs. Since MJ is 4 ½ years old we were encouraged to request early intervention through our public school district rather than waiting until he qualifies for kindergarten (the age limit for kindergarten is 5 yrs old by 9/1 – MJ will be 5 in Dec.). We’ve been told by several parents who have been through the process that you must advocate for your child and be very intentional about making sure they get what they need, which will take a lot of energy, educating yourself, and seeking people resources to support you and advocate for your child through these processes. We want to do whatever we can, but being so new to “the process” it seems like we are at the base of a mountain ten miles high…and we don’t have our hiking gear.

I don’t have time to get into how early intervention works or all of the details right now (sorry!) but I plan to blog about that soon! To put it simply MJ should be eligible to receive early intervention education to get him on the right track for success when he gets to “official” school age. The Buckeye School District has a preschool that could provide him what he needs. There is a lot of red tape, appointments, and specialists through the school district, meetings, and evaluations that are a part of the process. We have been in the process since late July and it is nerve racking and exhausting. One time MJ had 3 different evaluations by 3 different specialists in one week. We are at the point in this process where we have had our first parent meeting with the school district and various school specialists, and MJ has been through all of the evaluations by each school specialist including psychologist, occupational therapy, and speech therapy. BIG Meeting #1 – Tuesday (9/18) at 11:00am is the “BIG” meeting where we get together with the school district and all of the school specialists to “discuss” their opinions on MJ’s needs and hear what they recommend in terms of special education.

We have also had a pile of parent evaluations regarding MJ’s behaviors and abilities that we have filled out for the Dr. the past couple of months. Along with that MJ has had blood work done including genetic testing. Due to lengthy waiting lists (11+ months we were on the list) MJ had seen the Nurse Practitioner to get our foot in the door in July. BIG Meeting #2 - We have an appointment Tuesday (9/18) at 3:30pm with the actual Dr. at Phoenix Children’s hospital for more evaluations and observations – and to go over MJ’s diagnosis in detail.  

To an outsider meetings like this probably sound encouraging – like there should be some sort of relief knowing that your child is on the cusp of beginning to get the services he needs. Believe me that is the way I want to feel right now – but in all honesty I don’t. I am a nervous wreck. When it comes to HFA (High Functioning Autism) specifically, each child can be affected so differently and there are days that can be drastically better, and drastically worse than others.  These specialists spend such a minute window of time with your child that it is hard to feel confident that they can get an accurate grasp of his difficulties and his needs. The particular days MJ had his evaluations ended up being “good” days. Normally we would celebrate such days – but when an evaluator looks at you and says that he is doing such a “great” job and this must be a “good” day it puts a lump in your throat. You want your child to have good days, but you want them to get the help they need because 70%-80% of the days are not good. No amount of test or survey, or evaluation, or observation can fully grasp my child’s issues in my opinion. I know it is not possible – but a week in our shoes is what I wish they could do. A week where they can see the obsessiveness, the anxiety, the repetition, the melt downs, the craziness that we live on a daily basis just trying to maintain some form of normalcy in our household. What if they miss something? What if they think we are embellishing? What if the school doesn’t want to help him because he is “high functioning”? All of those thoughts go through your mind.

MJ has had a very bad week – it is wearing on all of us and Dan and I try daily to figure out how to help him. I had a mini-breakdown earlier today because of this. I am weary because we don’t know what to do on a daily basis to help him and it seems the older MJ gets the harder his issues are to handle. I am sad for my son that he has to go through what he does. Can you imagine what goes through that little mind when he literally cannot function without repetition and routine? What do I mean? He had a meltdown last night because in the hustle of our bedtime routine he didn’t “fix his friends” as we call it – he has stuffed animals with him on the bed and he has to straighten them and put them in their exact place before he can lay down – even if they are already in their place – he HAS to touch them – each one. And if he misses one – he has to start over. His mind cannot function – cannot relax if he does not do that every single night. Can you imagine your mind doing that to you? I am sad that we can’t help him yet. I am scared that Dan and I won’t get the help we need to help MJ. These meetings terrify me – how are we supposed to hike that 10 mile mountain with if we don’t get the hiking gear?!!

I was a mess this afternoon with all of that going through my mind and my heart. Then my sweet husband looks at me – the amazing spiritual leader of our home just looks at me with great conviction – “God has this. We have to trust Him.” It’s amazing how easy it is to let yourself turn into a mess – and how wonderfully comforting it can be to hear those words and know their truth. (Repeating to myself) God’s got this. God has this. MJ is in the palm of God’s hand. He will guide us. He will lead us. Thank you Lord. Thank you.

 Joshua 1:9 (NKJV)
⁹ Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go.”