Dear Lisa…

Dear Lisa of 1999,

It’s been one year since Jeff was diagnosed and you are still really frustrated. So far several doctors have told you to place Jeff in an institution.  Jeff is only three years old.  You know he has a ton of issues and is really sick, but an institution?!  It feels like your world is crumbling around you.  You are upset and can’t sleep because you are so very scared of the future.

So here I am , in the future, writing to tell you it will be ok.  These particular specialists are wrong, they can’t predict Jeff’s future.  They c ould not have got it more wrong!

In your fear, you have forgotten some of the advice mom and dad taught you.  Please stay focused, and try to remember these things:

1)  You cannot do it all at once.  Remember two checklists:  the long one that has everything you need to do on it and the short list with 1-3 things you can accomplish each week.  PLEASE don’t look at the long list more than once a week – It will tease and taunt you. Keep that short list going and be realistic. That long list will slowly disappear.  You will get a lot done. Trust me.

2)  Surround yourself with positive people (and stay away from the Debbie Downers).  You cannot change these folks.  Focus on where you have the power to drive positive change.

3)  The worthless emotions of fear and anger need to be banished as soon as possible.  You have already wasted a year with these emotions. Stop it.  Know that they still crop up but then squash them quickly with a positive attitude.

4)  I like how you celebrated every victory (no matter how small.) Continue to do that and smile as much as possible.  Know that good days are around the corner.

5)  Don’t be afraid to go ask questions –  talk to a speaker at the conference, or a doctor whom you have just met.  Bring Jeff’s medical binder and ask for guidance, direction and referrals.  They don’t bite. They are there to help. Take advantage of that. Be sure to bring them a snack or something to drink as a thank you.

6)  Don’t be afraid to travel to someone you think can help.  Miracle Flights is a blessing and might even fly you there.  You can make anything happen for Jeff.

7)  If something doesn’t sound right or feel correct, it probably isn’t.  Trust your instincts.

8)  Stay consistent.  Stay on target.  Utilize the lab results and behavior data as your guide.  Trust these measurements.

9)  Biomedical intervention works. Often before things get better, they get a little bit worse. Don’t be afraid. Talk to other parents.  Have clear guidelines and communication with your doctor.  Read more about treatments so you can start those dialogues sooner.

10)  Traditional therapies are a huge blessing.  They work even better on healthy kids.  Get Jeff healthy!

11)  Don’t freak out if a therapist calls in sick.  You are here and can try it yourself.  Don’t be afraid to open the log book and try it out.  That’s what parent training was for.

12)  Treat therapists like family and (some) family like guests. Don’t bark at people trying to help you.

13)   Your husband – please don’t forget you are married. Please remember why you fell in love in the first place.

14)  Your daughter Lauren is the best kid and sister ever. Remember to go out on dates with her. It’s ok to have fun.

15)  Be kind to yourself – even though you will never listen to this, please get a pedicure.  Your feet scare me.

16)  The more you give, the more you will receive.

You don’t know this but in June of 2011, Jeff finished 7th grade in a regular educational placement, not a special day class. He did really well.  He didn’t make the honor role but that’s OK – he’s better than “average” grade wise.  He has friends, a great sense of humor, some funny pick-up lines (they actually work!) and the most beautiful smile. His math skills are much better than yours.  He has mastered a lot of goals. He will continue to make progress.  He is a walking miracle.

And to the future – Let me tell you what he will do:

–          He will graduate from high school

–          He will go to college

–          He will fall in love

–          He will get married

–          He will choose a career and love  it

–          Don’t shutter at this one – but he will produce some beautiful grandkids for you and they will share his beautiful smile

With love & respect,

Lisa of June, 2011

P.S. If only I could have written this note to you twelve years ago.  I wish I could have.  My goal this week is for families new to the autism journey to read it and feel a bit more empowered, less scared and ready for the journey.  The journey of a thousand miles starts with one step. Walk towards the best practices and make good things happen for your kids.

21 thoughts on “Dear Lisa…

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  1. SO perfect and beautifully written. Thank-you for this. It brought tears to my eyes. I am the morther of a 3 year old son diagnosed with Autism and a 2 1/2 year old daughter diagnosed with Apsergers. Both are on the road to recovery thanks to people like you. Thank-you for helping to teach me how to fight to get my kids back!

  2. Dear Lisa, all I can say is THANK YOU. I really needed to read this. I am so glad Jeff is doing so well.

  3. Dear lisa,

    That brought me to tears. My almost 6 year old son was diagnosed in February and there have been too many emotions to go thru on a daily basis. It has been overwhelming at times but your note has provided me with strength to preserver. Thank you for sharing your journey so far. As it will help keep me guided on my own. Thank you for being a strong Mom.

  4. tears in my eyes, I should write one to myself as my daughter is finishing 9th grade at Venice High – yes, the big scary one with the open campus and some not so nice kids. She is getting straight A’s in honor’s classes but struggling with PE. She sang with the Choir at Disney Concert Hall and The Rennaissance Fair. She’s 15 and thinking about ‘boys’ … !! I’m both thrilled and terrified.

    For the other mom’s on this journey, it’s worth it. Many years ago I decided to leave Holland and hitch-hike to Italy (If you’ve read “Welcome to Holland” you understand). This has been the most amazing, fulfilling, exasperating, fantastic trip I could ever imagine. AND I got to meet people like Lisa on the way.

    May your trails be happy and your trials easy,

  5. Lisa, once again you help me find my bootstraps and saddle up. I have a kid to help. Your words are on point, every time. This is especially powerful and going to help SO many families. Thank you for sharing, inspiring, and just being. You rock. Julius is going to fulfill his potential too. Watch.

  6. This describes me and my son! When my Max was diagnosed at age two the specialists told me he had an approximate IQ of 51 and would likely never talk. What followed was about 6 months of depression, but deep in my heart I knew better. I had witnessed him doing remarkable things from birth that were far and away beyond what babies his age should be doing. Sure he could not speak but this child was perceptive! I spent the next three years making sure he received the SP, OT, and PT therapies he needed, and I do believe this was key to his success today. When Max was last tested his IQ was 129. He has been in all regular classes since Kindergarten and just finished his first year of high school. He is great at math and is in honors classes in that subject. He still struggles with language; especially writing, but we struggle through together. I have high hopes for his future and he is a credit to our family. I receive so many compliments about my sweet boy! Do not despair and do not sit back idly; you can change things for the better!

  7. Amen! Our ‘ special’ kids are just that. They bring new and exciting things to ours lives. They make us think outside the box. They make us appreciate the little accomplishments that everyone else takes for granted. They make us live! Thank you for sharing and thank you to our kids for life!

  8. Lisa,

    This is wonderful. It’s so good I wish I’d written it myself, which I hope you understand, is meant as a sincere compliment. Thank you for these words today.

    Shannon Penrod
    Host of Everyday Autism Miracles and Skills Live

  9. Dear Lisa,
    I’m glad you wrote this letter. I’ve fought for my son who has autism and partial trisomy 22. He’s maybe one of about 5 alive in the entire world with this diagnosis. All your words of wisdom are the things I tell parents I Mentor and advocate for. the most important thing is to never give up, and work on smaller goals. Over the years, all those small goals add up. My son went from being “profoundly” autistic to being considered “middle-to-high functioning”. The genetic challenge I can’t change, but I got Colin 100 hrs/wk of therapies. He’s received an average of 70 hrs/wk for the past 8 years. Every aspect of life can be taught in therapy. Like you said, don’t always listen to the “experts”. Oftentimes they’re wrong. Don’t give up hope. Give yourself a breather sometimes. Use the “Medically Needy” Medicaid Waiver – it applies to all children regardless of income. Get some good HHAs, because part of their job is to reinforce what the therapists teach. You can also get PCAs to come in and help with the rest. Take care of yourself – get sleep. If your mind is racing, see a doctor and get whatever meds you need for stress, anxiety, depression, etc. If you feel up to it, get exercise and eat right. We have a Facebook page for NJ Special Parents. We swap info, supplies, all sorts of stuff. Remember – you’re not alone. We’re all sisters and briothers under the skin. We’re here to help. Sincerely, Megan

  10. Lisa, this is so on target! In my case, and with so many other parents I have talked to, often we get overwhelmed by the enormity of our child’s diagnosis, the issues ranging from medical to behavioral to educational, and our fears for the future. You do such a great job of breaking it out into managable pieces and showing what can be accomplished. Kudos to you, Jeff and your family for staying the course, not just for Jeff but for all our families.

  11. Speaking as a dad of a seven year old son with autism, and on behalf of all of the autism dads, a big THANK YOU to all of you wonderful moms out there! As guys, we’re not always the best at saying how much you amaze us with your dedication, determination and strength, but we love you and appreciate you for saving these kids.

  12. what is meant by Biomedical treatment? my son was diagnosed about a year ago, and all that is currently happening is a half day class at a special school for Autistic children. I can not argue against the specialized educational opportunity with a lower teacher/student ratio, at least to start out with, but if it’s possible to ultimately mainstream him, are we doing enough? The reason I ask when Biomedical is, is because I’ve heard about detoxification and going organic, eliminating glutton – what steps should we try? I’m not asking what steps will work, because I do know that each case is different. Feel free to privately respond, or anyone, I’m on facebook as RoLaAus and my email is Robert (AT) theAustinFamily (DOT) us
    Thanks all.

    1. Hi Robert

      At TACA we firmly believe in the proper diagnosis, early intervention and medical treatments unique to the child’s needs. There is a very specific post on biomedical treatment and autism here

      Please check out the blog and links. TACA has seminars and parent mentors to walk you through this process. The post shared with you will help you investigate the next steps.

      Also – inclusion in school is something that can work for many children on the spectrum. Read this link for more info

      All my best- Lisa

  13. You are the advocate for your child, don’t forget to take care of your needs, your health is very important also. I am a recovering alcoholic & addict, I have always heard this H.A.L.T .never get to Hungry, to Angry, to Lonely, or to Tired, good luck .

  14. Lisa,
    This is so heart warming…..Beautiful & exactly what I needed to read today! Thank you! Lot’s & lot’s of hugs!

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